Josiah's Journey

899 Days

2012-01-17T23:30:00.000-08:00

Today marks a sobering milestone.

The number of days since Josiah died is the same number of days he lived.

You may have to read that sentence twice to catch it.

It kinda kicks the breath out of you, doesn't it?

February 16th, 2007 to August 2nd, 2009 equals August 2nd 2009 to January 17th 2011.

899 days.

Strange, huh?

I don't know what to make of it. It's something to be aware of, to pause for, but then what? What I am supposed to do with this knowledge, here at the intersection of this very strange anniversary?

From now on we are going to mourn him longer than we were with him. From now on he's going to be dead longer than he was alive.

Each day we have been moving farther and farther from Josiah. Each day the gap between now and then widens.

Yet. The opposite is also true.

Each day we move closer and closer to Josiah. Each day the gap between heaven and earth shrinks.

What was to what is, what is to what will be.

We can count the days apart, but we can't count the days until we're reunited.

Living life with enternity in mind is ... well ... mind-boggling.

------------------------

A day under 900.

Josiah changed my life with one day. And then God gave us 898 more.

A lot can happen in 899 days, especially when you break it down year by year, season by season. Honestly, it hasn't felt that long. I had to re-do the math to make sure I was right.

Josiah's time with us seemed to last much longer than these days that have followed. Not to take anything away from our daughter, of course. She is the JOY and LIGHT of our family!

Our time with Josiah was so unreal, so full: new experiences, new rythms, new people, new sights and scenes. Life was very different, extremely abnormal. The highs were insanely high and the lows were excrutiatingly low. Our senses and souls were being heightened and stretched in every imaginable way. No wonder that those 899 days felt like a lifetime.

899 days also means 899 days grieving, waiting, wrestling, and bearing. And to think that I haven't reached the end of my tears ...

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I miss talking about Josiah.

When he was alive, you couldn't help but talk about him. Our entire lives revolved around him, we had to analyze his every breath, his every moment. We blogged maddeningly in the hospital as tried to keep people updated. Daily there were handover reports, assessments and instructions with the nurses, respite workers, and hospital staff. We would problem solve perceived symptoms and review procedures, looking for ways to improve his care.

If Josiah was present in the room, he was the conversation piece. That's just how it went. When we went out we were asked relentlessly about Josiah and we LOVED IT. We loved explaining for the one-thousandth time who our son was and how he was overcoming his medical challengings. We gushed as we talked about his character and his achievements. You couldn't shut us up!

We talk about Josiah in a much different way now.

Hushed tones. Less enthusiasm. We say more with our body langauge than we do with our mouths.

Just this week I got to talk about Josiah again. I was able to run through his medical history like it was 'old times'.

It brought me SUCH JOY - I had no idea how much I had been longing for a moment like this!

It was a strange and wonderful thing how it all came back to me, the rhythm we would get into as we described our son from head to toe. On good days, it flowed like poetry. Yet on this day there were the lags and gaps, and then the sad realization that I was forgetting things that I thought were unforgettable.

The very common medical jargon that we used nearly every day for 899 days was disappearing. I couldn't come up with the right words, I couldn't pronounce things correctly. I was vague on things that used to be so detailed and clear.

And I realize again that I am talking about Josiah in a much different way now.

------------------------

899 days and then another 899 more. Another day, another day, another day ... until tomorrow wakes up to eternity.

What a merciful day that will be.

------------------------

However many years a man may live, let him enjoy them all.
But let him remember the days of darkness, for they will be many.
~ Ecclesiastes 11:9

Behold, I make all things new.
~ Revelation 21:5

G&P
- Andrew

This Is Not The End

2012-01-16T17:11:00.000-08:00

I think it was when we were driving back from Seattle in October.

We were listen to Gungor's Ghosts Upon the Earth and - without any warning or context - Marie blurts out "I want this song played at my funeral."

Yikes.

Not exactly conversation starter material.

The lyrics are simple enough, yet a soothing reminder of what is to come. There is life - real life, greater life - on the other side of death.

Thus, we grieve and lament in absence as we hope and trust in reunion. For in Christ there are no good-byes. Only see-you-laters.

And by the way, Marie was totally right. This would be the perfect song to sing at any funeral where the hope of heaven is found.

This is not the end
This is not the end of this
We will open our eyes wide, wider

This is not our last
This is not our last breath
We will open our mouths wide, wider

And you know you'll be alright
Oh and you know you'll be alright

This is not the end
This is not the end of us
We will shine like the stars bright, brighter

-----------------

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him.
~ 1 Thessalonians 4:13-14

Listen, I tell you a mystery: We will not all sleep, but we will all be changed — in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed.
~ 1 Corinthians 15:51-52

Happy Listening

- Andrew

Just Another Sad Day Among Many Sad Days

2012-01-11T01:38:00.003-08:00

Today is one of those days that is just tough slogging.

I'm miserable. I wanna hide in a hole. I don't want to talk to anyone. Everything it seems makes me want to cry. Just a no good day where grief has completely infiltrated every mundane part of my life.

These are the days where I just wait for the bubble to burst. A change of pace, an unexpected grace, a divinely appointed conversation, a weep-fest. Something - anything - that will bring me out of this debilitating despondency and into something serene, still, and life-giving.

For three nights in a row I've been up late, unable to sleep. I journal, I read, I watch a movie, but I am restless, mopy, and curfuffled, unable to get to sleep until exhaustion finally overcomes me late into in the evening.

I feel utterly ruined.

I go about my day, shuffling and sweeping the broken pieces of me from one place to another.

Broken pieces. My inward state is more than just an overturned box of puzzle pieces. A pile of puzzle pieces - no matter how many or how difficult - is still orderly. Each piece has purpose and a consistent form.

Instead, I liken my inward state to a porcelain figure dashed upon the rocks, shattered and scattered, jagged pieces without any uniformity, each piece unsightly and fragile, needing to be handle carefully lest it breaks further or wounds with its sharp edges.

This is what grief does to the inner person.

But. I still have things to be grateful for.

God's mercies and blessings are near even now as I live in shadow and darkness.

These are quiet comforts that do not still the storm that rages around and within me, but they are treasures to remind me that I am not alone and that this is not the end.

---------------------------------

Today, a friend of a friend had the worst of days, the worst day of many many worst days.

Unless the LORD intervenes, she is going to die.

Unless the LORD says "This shall not be", the cancer will win.

A young life will be extinguished, a chapter closes (prematurely in our eyes) and another chapter begins in the really real life found in God's presence.

My mopiness all of a sudden looks quite small and selfish. Real, valid, yet quite insignificant in the present moment.

And so tonight becomes the fourth night in a row that I'm up much too late with my thoughts and my grief. But this night, I have put aside my sorrow to bear the sorrows of the many others who are waiting to see what the LORD will do.

And as I pray I've listen to Casimir Pulaski Day by Sufjan Stevens. The tone, the words, the tension of it all ... the song places me right in the very center of this unfolding tragedy, as if I am watching a play move from the second to final act.

What will the LORD do?

A glance at the title will tell you little about what the song is about. It's a love song, but a lament. It begins and ends with sadness, for despite the fervent faith of many, the beloved passes away.

It's beautiful, it's terrible, it's brutally honest. There is very little good news in it. Yet the words have been a solace and a guide to me on my path of grief. Maybe you can relate. Click the link for the full lyrics or you can listen to it below.

Tuesday night at the Bible study
We lift our hands and pray over your body
But nothing ever happens
....
All the glory that the Lord has made
And the complications when I see His face
In the morning in the window

All the glory when He took our place
But He took my shoulders and He shook my face
And He takes and He takes and He takes

~ Sufjan Stevens "Casimir Pulaski Day"

Oh God have mercy.

G&P
- Andrew

Delivering Christmas Gifts to BC Children's Hospital

2011-12-22T10:44:00.000-08:00

Gemma and her parents, a family we've gotten to know!

Something you gotta know right off the top: I have a pretty amazing family.

For the last couple of years, our family has been purchasing gifts in memory of Josiah which we donate to BC Children's Hospital. This is something Marie and I have done on our own (as well as providing a gift at Josiah's birthday) and our extended family has picked up on it as well. This year we added a second gift in memory of my dad who also gave to BC Children's during - and after - his grandson's time there.

Our niece - ever the entrepreneur at the age of six - has been finding creative ways to buy gifts for the children who are hospital-bound during the Christmas season. This summer she started raising chickens on the farm, collecting and selling the eggs, and then using the money to buy gifts for kids.

Wow. Just wow.

This past Monday Marie and I (with the help of our Aunt Chrystal and our cousins Rachel and Denver) delivered gifts to BC Children's Hospital. It was a good and sad thing. A few familiar faces, lots of familiar sounds and smells that bring back so many memories.

Marie and I have learned to brace ourselves for our inevitable responses that come from returning to the hospital: irritability, solemness, echoes of past anxieties, and alike. We warn each other about how we might respond, try to be gracious with each other and be quick to forgive when we lash out. Some days we do better than others.

Return visits have not become any easier, but they are fewer now since now we only return to bring gifts. The families we got to know have all been discharged - praise God! - yet there are a few staff members that we consider friends and try to remain connected with.

As difficult as it is - and it may sound odd to others who also grieve - but we have found meaning and healing by 'forcing' ourselves to keep BC Children's as a part of our seasonal rhythm. A part of stepping forward - for us at least - is to maintain 'markers' and traditions throughout the year that remind us of our son and what God has led us through. But keeping links to our past - thus, as a result, re-entering the grief and the pain each time - we move forward with hearts that are heavier but healthier. This may not be how all people grieve, but this has been our experience.

To all those who are - out of consideration for our grief - praying for our family this Christmas, we give you our humble and sincere thanks. There is much I am dreading as Christmas Day approaches. Yet, I am reminded that Christ's birth points us to his return, and so I lift my gaze forward to anticipate our Savior's next coming when all will be made new.

Hope and Comfort, Grace and Peace.
- Andrew

Telling Stories of Josiah to Joelle

2011-12-01T08:56:00.001-08:00

Marie and Joelle looking at photos of Josiah after breakfast. Happy / sad moments.

She never sits this still and was just soaking it all in.

G&P
- Andrew

Judy Martens - "Strong Enough"

2011-12-01T08:33:00.001-08:00

This is belated, but it came to mind again last night so I'm linking to it this morning. My friend Judy posted some thoughts for me the day after my dad died. You can read it all here.

via Flickr

You must. You must think I'm strong, to give me what I'm going through...
~ Matthew West "Strong Enough"

G&P

- Andrew

Not Feeling Christmasy at Christmas Time

2011-11-30T22:54:00.001-08:00

via Flickr

Misery loves company, as the saying goes.

With Advent upon us and Christmas accelerating towards us, I am again drawn to the sad and lowly and tragic parts of the Christmas story. I caught myself doing this when Josiah died and I'm on that same path again this season.

Christmas and sorrow. They go together more likely than we think. Most of our holiday rhythms have drubbed out any hint of sadness, for it is after all supposed to be the season of perpetual joy. And so we put on a seasonal sheen to fit in and a festive glow is projected in all that we do. We cloak ourselves with holiday goodwill and merriment, and yet within, our souls are aching and the Christmas season is just making it worse.

Loneliness. Pain. Heartbreak. Grief. Shame.

Christmas sometimes comes at the worst time of the year.

And yet, it is the story of God coming to us. To us. It is the beginning of the slow renewal of the world. It marks the return of God being with man for the first time since He walked in the garden with His creation.

God chooses to be with us.

In sadness. In sorrow. In suffering. God comes.

To suffer with us. To suffer for us.

This is Christmas.

... Advent is not just remembering how the world waited for the coming of the Messiah, but how we still wait for His coming. It is a time to embrace the ache of our lovesick hearts, to rejoice in our hunger pains, to survey the broken mess of our world and know that, because God fully entered into it, He will also fully redeem it.

As we sit in our suffering and know that the God of the universe decides to sit with us in it, we have a truth that is weighty enough to answer our heavy hearts, our loneliness and disillusionment that are intensified during the holidays. Dietrich Bonhoeffer said that while God wants us happy as little children, it is the grown-up knowledge of God’s desire to always be with us, the fact that “we are no longer homeless; a bit of the eternal home itself has moved unto us,” that brings true joy. “Therefore we adults can rejoice deeply within our hearts under the Christmas tree,” he said, “perhaps much more than the children are able. We know that God’s goodness will once again draw near.”

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She will give birth to a son, and they will call him Immanuel,
which means ‘God is with us.’
~ Matthew 1:23

Because of God’s tender mercy, the morning light from heaven is about to break upon us,
to give light to those who sit in darkness and in the shadow of death,
and to guide us to the path of peace.
~ Luke 1:78-79

[via RELEVANT]

G&P
- Andrew

Shane Hipps - Does God Suffer Like Us?

2011-11-23T14:19:00.001-08:00

via Flickr

A wonderful post by Shane Hipps, a pastor and author serving at Mars Hill in Grand Rapids, Michigan. Somewhat fitting of a read for me, coming off the heels of my preview post.

Here's a snippet of what Shane's getting to:

But when pain finds purpose or meaning it transforms from mere hurting into suffering. We could use the word Suffering to describe pain with purpose. Suffering is pain set in a larger context. Suffering is what happens to a woman giving birth. The labor pains are extraordinary, but the pain becomes mere memory when the child is born (so I’m told). The pain is matched only by the clarity of purpose.

Discovering that pain may have a purpose doesn't alleviate - even a smidgen of - the grief or insult, but it can help put the pieces of your life back to better. Better to have a God that spends sleeplessness nights tending to us than a God who falls asleep on the job.

G&P
- Andrew

CS Lewis Quote - What Do You Find When You Need God?

2011-10-27T14:53:00.000-07:00

via Flickr

I read this today.

"Go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face and a sound of bolting." (CS Lewis, A Grief Observed)

God.
On the other side of the door.
Present.
There.
But inaccessible.
Distant.

He locked Himself away.
He can hear you.
You know He's there.
But you can't reach Him.

What hurts more?

The pain that sent you to God's door.
Or the pain of finding the door locked.
From the inside.

God.
He wounds.
He heals.
He promises.

But when?

"See now that I myself am He! There is no god besides me.I put to death and I bring to life.
I have wounded and I will heal, and no one can deliver out of my hand."
~ Deuteronomy 32:39

"Why, O LORD, do you stand far off?
Why do you hide yourself in times of trouble?"
~ Psalm 10:1

G&P
- Andrew

Dad's Eulogy - Andrew's Portion

2011-09-16T23:21:00.000-07:00

It took a while for me to get around to it, but here's my portion of my dad's eulogy that Mike, Danelle, and I shared at his memorial service.

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Opening Comments

A full funeral is a sign of a man who loved and wasloved.

Don was a man of integrity, a faithful friend, a hardworker, and above all a man who sought to honor God in all he did.

He was a family man, who dearly loved his wife Bev, hischildren Andrew, Michael, Danelle, and their spouses (Marie, Shawna, and Paul),along with his grandchildren Cheyanne, Emmersen, Isabella, Mason, Josiah,Joelle, and Olivia.

Dad’s Life Story

Donald Henry Haak was born June 13, 1958 to Edward andElisabeth Haak in Abbotsford, BC. He wasa younger brother to Dennis and an older brother to Lorne, Gord and Betty-Lou.

For his first few years, the family lived in a home alongHuntington Rd and attended Matsqui MB Church. His father at this time was in construction and was often away for longperiods of time. Nonetheless, there were times when the family was able to jointheir father near the worksite and Don spoke fondly of his time in Comox wherethey lived by the ocean. In fact, he relayed a story recently about how his momhad to collect all the little crabs that would crawl out of their pockets afterthey gone to sleep.

In 1963 the family moved to an acreage in Mt. Lehman tobe near the dairy farm operated by Ed’s parents. Four years later, when Ed’sparents retired from farming, Ed and Elisabeth chose to purchase the farm andsoon moved the family onto the property.

As a child Don attended Mt. Lehman Elementary School. Whenhe was 11 he came into his parents’ bedroom and said that he wanted to besaved. His parents shared, read from the Bible, and prayed with him and fromthen point forward, Don followed Jesus.

Don would go on to attend MEI for high school. It was ingrade nine when Bev Martins first caught his eye, but it was not until grade 11that they started to date. Some of their fondest memories of dating high schoolwere singing together in concert choir and Bev cheering at Don’s basketballgames. It was also during this time that Don followed Jesus in obedience bybeing baptized.

After high school Don attend Fraser Valley College forone year as he pursued agricultural studies, and then spent a year at WinklerBible School in Manitoba.

Returning to Abbotsford, it was a couple months later inJune 1978 when Don asked for Bev’s hand in marriage, and they were engaged atMill Lake. Don and Bev were marriedOctober 9^th, 1978 and made their first home on Schroeder Ave nearthe family farm. It was at this home that their family grew and their threechildren were born to them.

That same year they got married, Don started working onthe family dairy farm full-time. In 1997, Don took over the farm when hisfather retired. This coincided with moving the entire farming operation fromMt. Lehman to Enderby, a daunting yet successful transition. The joy of thisnew adventure was tainted by the grief of his mother’s death in the spring of1999.

While he lived in Mt. Lehman, he was involved in thecommunity by coaching his children’s softball teams. Don and Bev enjoyedserving together at East Aldergrove MB Church whether it was through music,Sunday School or being involved in care groups. Looking back, Bev has fondmemories of Don walking home from work, singing and conducting to himself, wavinghis arms to music only he was hearing.

In Enderby, Don continued to serve within the localchurch – Enderby Evangelical Chapel - by leading Sunday morning music, servingas an elder, working with the youth, and followed his passion to teach othersabout God through care groups. He was also involved in the community, servingfor a number of years on the KODA board, the Kamloops Okanagan DairyAssociation.

When he wasn’t farming, Don enjoyed camping, hiking,fishing and sports such as basketball, tennis, and golf.

More recently he discovered a passion for motorbiking,often taking the Harley out for a ride with Bev, as well as woodworking,creating big and small projects for the home and for family.

But first and foremost, was Don’s love for God and hislove for his family: his wife, his children and their spouses, and hisgrandkids. He was proud to see all of his children choose to follow Jesus at ayoung age and start families of their own centered on Christ.

Personal Portion

At this time, us three kids will share a little aboutwhat our father meant to us. Because I’ve done all the talking so far, I’mgoing to keep my thoughts brief.

I loved watching my father live. I learned everything Ineeded to know from him on how to be a man, how to be a husband and how to be afather. Further, he showed me everyday what it meant to follow Jesus. To me, heepitomizes the core of what it means to be a Christian: love God and loveothers. It’s his example in my life that I draw from as a pastor.

My dad supported us when our son Josiah was in thehospital and he comforted us when Josiah died. I will never forget the depth ofhis grief, but also the depth of his love for Marie and I and for our twochildren.

While our grief is devastating, our hope ismesmerizing. We look forward to the daywhen all things will be made new, when all sorrow is removed and our family iswhole again in God’s presence.

Until then, I will miss his wisdom and ability to listenso much. Even more, I will miss his broad smile, his infectious laughter, and hisstrong embrace.

Meagan Hildebrandt - "Uncles"

2011-09-07T10:23:00.000-07:00

A couple weeks ago my cousin Meagan blogged her thoughts about my dad's death. You can read it all here.

G&P
- Andrew

Video Part Two - Joelle is Walking!

2011-09-06T23:24:00.000-07:00

For her finale, Joelle finishes the evening by falling / jumping into the mattress on purpose. It was so hilarious. Please excuse the cackling laughter and snorts of us the proud and delighted parents!

Gotta admit, after all the surprise, joy, and pride came a little bit of sadness. Joelle has reached yet another milestone that Josiah never got to. I didn't dwell on it - didn't want to ruin the moment - but Josiah comes quickly to my mind at times like these.

So watch out world - we just enter a whole new level of craziness here. Thanks for celebrating this milestone with us!

G&P
- Andrew

Video Part One - Joelle is Walking!

2011-09-06T23:15:00.001-07:00

So it's not all sadness and sorrow in our home these days. Tonight Joelle took her first steps!

And yes, for those keeping score at home, Joelle will be eleven months next week and has completely skipped the crawling stage. Marie and I are going to have to take a crash course it what it means to baby-proof our home!

Sorry that the video quality is poor - it was kind of dim in the room and we didn't realize it would be so dark on camera.

... more video to come ...

Reflecting on Job 9:12 and 17

2011-09-06T16:06:00.000-07:00

via Google Image search

If He [God] takes away, who can stop Him? Who could say to Him, ‘What are You doing?’ ... For He crushes me with a storm, and hurts me more and more without a reason. ~ Job 9:12, 17 (NLT)

Snippets of Job's life and conversation are easy to connect with. I read this portion this morning during breakfast.

I'm not interesting in taking God to trial. I'm not feeling that I'm guilty of something and this is my punishment from God. So in that way, I'm not coming at this tragedy the same way Job approached his. But his words echo the thoughts that I think and he speaks things that I go "Yes! This man understands how I feel!" to.

People ask if I'm angry at God. I haven't been angry at God (yet). Resigned for sure. That 'toss-your-hands-the-air-because-God-is-going-to-do-whatever-he-wants' kind of response is what I feel. As Job says, God is God: if He takes away, who can stop Him?

Right now I'm not concerned with the "why" of it all. That will come I'm certain. I'm still lost in the overwhelming sea of this sorrow, flailing to grasp something that will steady me, something that will hold my head above the waters so that I can breathe and rest and find my way back to the shore.

Yes, the quick answer is "God is who you can hold onto." Yeah, I get that. And I've been turning to Him a lot (we're still on talking terms by the way). But it's hard to keep turning to Him when He - the one who holds all Life - has drawn two lives from our family into His presence.

Maybe I can describe it this way: I trust God, I just don't like Him (right now). Again, that sounds like I'm a five year-old throwing a temper tantrum and I'm being drawn into submission to God kicking and screaming (which isn't how I feel). I know I need God and I can trust Him will my life and all this life offers, but He's not exactly 'winning me over' in the last couple of years. Not a season of God 'wining and dining' our family that's for sure.

Is God bigger than this? Oh yeah. Will God and I be closer through this and after this all? Absolutely. Am I more appreciative of Jesus' work of redemption and the Spirit's presence on earth because of these tragedies that have befallen us? Most definitely. But do I "like God" more because of this? Uh-huh.

This tragedy is God's doing. And He will lead us out of it.

And though the pain is an ocean, tossing us around, around, around
You have calmed greater waters, higher mountains have come down
I will sing of Your mercy, that leads me through valleys of sorrow, to rivers of joy
~ Jars of Clay "The Valley Song"

G&P
- Andrew

Just Doing Life - "For My Uncle"

2011-08-17T15:28:00.000-07:00

My cousin Jessica blogged her thoughts on my dad's death. You can read it all here.

G&P
- Andrew

Dad's Eulogy - Michael's Portion

2011-08-17T15:01:00.002-07:00

Shawna posted Michael's portion of our dad's eulogy at her blog this week. You can read it in full there.

"I am so very blessed to have had a father who exemplified these characteristics, who sought God above all else, and who showed me how to be a man, husband, and father, by watching him live what he said he believed. I am thankful this was a challenge my dad succeeded in and now I have the opportunity to pass these lessons on to my kids. I find peace in knowing he is in heaven with his creator, and that I will see him again one day. During the last few days the Lord has brought me comfort by directing me to these verses: 'That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.' 2 Corinthians 4:16-18"

G&P
- Andrew

N.T. Wright – Funerals, Hope, & the Grieving of God

2011-08-17T14:57:00.002-07:00

This is a re-post from my youth ministry blog.

These words from N. T. Wright cared for my soul today. Very timely.

The sun must set. But there will be a new morning.

You can purchase this video at The Work of the People.

[via The Pangea Blog]

G&P

- Andrew

Funeral Arrangements for My Father

2011-08-04T17:17:00.001-07:00

This is the announcement that we sent out into the community this week.

It's with great sadness we announce the passing of a loving husband, father, and grandfather, Don Haak - a local dairy farmer from Enderby - who died on Friday July 29th.

His funeral will be held noon Saturday August 6th at Broadview Church in Salmon Arm.

We invite family, friends, and those whose lives Don has influenced to join us as we celebrate and remember his life.

In lieu of flowers, donations may be given to BC Children's Hospital in his memory.

We thank you for your prayers, concern, and all the support that we have received.

In God's Trust

- Andrew

Please Pray For Our Family

2011-08-02T09:53:00.000-07:00

I know there may be people peeking at the blog this week considering today marks the two year anniversary of Josiah's death.

While there's is much that I can write about that, there are more painful things on our hearts.

My father (Don Haak) died in a farming accident last Friday.

The pain we are experiencing as a family is overwhelming. As you have prayed for us in the past as we journeyed with Josiah, please pray for our family now.

Thank you
- Andrew

A New Thing and an Odd Thing

2011-04-30T10:50:00.000-07:00

So two weeks ago we had two experiences that were on opposite end of the spectrum.

First, we got a phone message following up on Josiah's orthotics. Two years ago Josiah was fitted for leg and foot braces (he hated them and we gave up after a few tries) and I guess he was due to be re-checked and sized. That's a message you don't expect to hear at the end of the day. Definitely put a melancholy cap to the evening. Oh, and we didn't bother to phone back :)

Second, Joelle is starting to sit on her own! It's cute and - wow - it's so much easier to get her dressed in the morning. But it's hard in a strange way because it is a milestone that Josiah never reached. Less than 7 months in with Joelle and we're learning new things that we never experienced with our 2 1/2 year-old.

Such is life.
- Andrew, Marie & Joelle

A Slight Change in Status

2011-04-08T17:27:00.000-07:00

If I were to describe where I'm at in one phrase, it would be this: I'm looking back less often ("I wish we could change what happened that day") and looking forward more often ("I can't wait until our family is together in heaven"). It's not like this everyday, but I seem to heading in that direction.

I guess that's a milestone in itself.
- Andrew

My Nieces Talk About Heaven & Josiah

2011-02-08T11:14:00.000-08:00

You gotta read this blog post that my sister-in-law Shawna posted a couple of weeks ago. It's the melt-your-heart-teary-eyed kind.

~ Andrew, Marie & Joelle

Haak Family Christmas Card (2010)

2011-01-03T17:01:00.001-08:00

Finally, something I wanted to post two weeks ago, but with Christmas zaniness followed by a week of holidays I just never made the time. These photos were from a photo shoot my cousin Meagan did for Joelle in early November. I'll try to get a slideshow of photos set up soon.

We hope all of you had a Christmas full of comfort and joy, and that God will be near you as you make your way through the new year!

Blessings
- Andrew, Marie & Joelle

Catching up with Joelle & Family

2010-12-05T02:12:00.001-08:00

The main reason that I put off blogging after an extended pause is because I never know where to begin. There is always just too much ground to cover. 54 days ago our baby girl was born ... and it's been a whirlwind ever since. It would be impossible to account for everything that has happened since then, but I'll give you the lightning tour!

Marie's mom stayed with us for two weeks to help us around the house while Marie and I gathered our bearings as we adjusted to being parents again. In the weeks that followed were blessed by many visitors, so many gifts (being on the receiving end of such generosity is humbling and overwhelming), and delicious meals provided by families our church.

At the beginning of November we flew out to Calgary for a week to celebrate Christmas with Marie's family. It was AMAZING. Joelle was perfect for our flights, the house was crowded and festive, and the time we spent together was priceless, a wonderful time of laughter, sharing, and making memories. It was especially significant in that it was the first time since Josiah's memorial that our whole family had been together. A ginormous baby shower was put together for Marie and Joelle which resulted in us having to bring two extras bags onto the plane. We feel very very spoiled and beyond grateful.

Joelle was dedicated at our church just a few weeks ago on November 21. It was a special time, yet Marie and I both discovered that it was a unexpected trigger of emotions as we celebrated our daughter and lamented the absence of our son. Having Josiah dedicated (over a year late!) was a pretty big deal and being on the stage with Joelle conjured up a lot of sadness that entwined with our joy.

The journey - short as it has been thus far - has been marked with the expected roller coaster of highs and lows. Josiah would have loved Joelle so much. I would give so much to see them play together, just to hold the both of them, but that will have to wait. Holding Joelle brings such contentment and elation as a father, but it also reminds me of the son that I am not able to hold any more. I remember months ago thinking aloud with Marie how as parents we will now always feel that our family is incomplete, but that our children wouldn't know any differently. It's an odd thought. I hope my children will never feel burdened by the loss that Marie and I carry, the absence that we experience in our family. Time will tell I suppose.

There has been a whole lot of "undoing" in our parenting. Often it is in the unplanned moments where Josiah's absence is revealed and we mourn him. Obviously with Josiah we needed certain practices and there were things that were normal for us but astronomically odd for everyone else. We are trying to figure out what 'normal parenting' looks like. It's too easy for us to shift-gears into worst case scenario thinking as we spot a rash, deal with a fever, see Joelle gag, and so on.

For example, Marie and I trained ourselves to respond to every noise Josiah made in his sleep (shifting in the bed, alarming, crying, and so on). Joelle is a noisy sleeper, constantly grunting and squeaking and for days I couldn't sleep. I would wake up at her slightest noise or movement, and it took a while for me to be able to let down my guard at night so that I could actually rest.

Every time that Joelle was crying while Marie was changing her diaper I would ask Marie if she needed help. Marie would give me an odd look, and I finally put it together that changing Josiah's diaper when he was crying was at minimum a two-person job. I was just so accustomed to tag-teaming a diaper change that I would automatically make myself available if Joelle was crying.

I remember one night just rubbing Joelle's back and subconsciously being confused about what I was experiencing, as if something was wrong with the situation and I couldn't put my finger on it. And then it dawned me that Joelle's back is healthy and normal and my mind was telling me something was wrong because I was so used to rubbing Josiah's crooked spine.

It's an odd journey that we find ourselves on, simultaneously carrying joy and sorrow. It's not the path that we have chosen, but we will continue to make our way by God's mercies empowered by the hope that our family will be wholly together in eternity.

So who is Joelle? Let's begin with this: being only hours old, she was already able to brace herself, lift up her head and scream :) Ah yes, this girl is strong-willed! She's a great eater, loves her baths, is highly soother dependent, difficult to put down at a night, not a fan of the car seat, and (when in in a semi-upright position) is already pulling herself forward and using her elbows to balance. She's through and through a daddy's girl (which is nice because it's universally accepted that Josiah was a mommy's boy except when daddy came from work) and her smiles are preciously similar to Josiah's. She laughs, she 'talks', and she rarely sits still (you can guess who she takes after in that department).

A quick comment about how we came to choose the name Joelle. We were leaning towards a different name for most of the pregnancy, right up to when Marie started labour. And while we really liked Joelle as a name we felt that it was too close to Josiah: we didn't want to burden her in any with Josiah's memory or legacy, and we didn't feel as though we were ready to have her share his nickname 'Jo'.

But when Marie began labour she was convinced that this baby girl was going to be called Joelle. And we've been at complete peace with that and so glad that we followed that prompting. We so far have mostly avoided calling her 'Jo' - though sometimes it slips out by habit - but we know for many people and quite possibly for her it provides a very special connection to her brother that she will never meet. Besides, it's a cute nickname and there will are plenty of other possible nicknames that may stick as she grows up such as Elle and Ellie.

One of the clinchers for us is the meaning of Joelle: depending on your source, it means "The Lord is God / Yahweh / LORD". For me, I really receive that name two-fold: first, it is a declaration of our faith (and we pray that it would be her faith as well!) and second, it has this sense of resignation, surrender and submission - God is God and he will do what he wants.

Closing thought that just popped into my head: we haven't returned to Josiah's grave for a while. I think it will be extremely overwhelming to return with Joelle. I'm definitely not looking forward to that moment, but it will come sooner rather than later. I think we'll probably just wait until Christmas day, but we'll see what happens.

I think the effects of my self-induced caffeine awakeness are starting to wear off and I'm eager to catch some rest. Hopefully this week I will put up some pictures of Joelle.

In God's Abundant Mercy and Kindness
- Andrew, Marie & Joelle

Joelle Marie Haak - Pictures!

2010-10-15T14:15:00.004-07:00

I know you've all been waiting impatiently for more photos. Here you go!

If you want to see the photo captions, 'hover' your mouse over the slideshow and a 'text bubble icon' will pop up in the left-hand corner. Click on it and captions will appear for each photo.

If you want a photo of yourself removed please let me know :)

Thanks for all the love

- Andrew, Marie & Joelle.

She's Home!

2010-10-13T14:05:00.000-07:00

Say hello to Joelle everyone!

She's Here!

2010-10-12T22:35:00.000-07:00

Hello Everyone!

Joelle Marie Haak was born at 11:46 AM on Tuesday morning weighing 7 lbs and 4.5 oz. Momma and baby are doing superb. The ECG on Joelle revealed no concerns. Pictures will hopefully be up tomorrow (forgot the camera at the hospital). Thanks for all your prayers!

Glowing and Grateful
- Andrew & Marie

Maternity Photos

2010-10-09T00:20:00.001-07:00

Our cousin Meagan this past weekend blessed us with a maternity photo shoot! We had a lot of fun. Here are just a few of the photos that we have from our afternoon together. Thanks Meagan!

If you like Meagan's work, check out her website: Meagan Hildebrandt Photography.

Enjoy!
- Andrew & Marie

Baby Updates - The Follow Up Plan

2010-10-07T10:46:00.000-07:00

Just wanted to let everyone know a plan that has been set in place (at this point). After our baby girl is born the doctors will give her an ECG (electro cardio gram ... a few electrical probes placed on her body) to examine her heartbeat pattern. If the pediatrician notices that the ECG catches anything of a concern, then she will wear a Holter Monitor (another heart checker, but more detailed) for a day or so to gather more data.

It sure would be nice to avoid all that but we'll see what God has in store :) We're not worried, in that these tests are not foreign to us (familiar territory is sometimes oddly comforting), but the "What if's?" and "Here-we-go-again's" certainly have a way of popping into our heads. So much for having a 'normal' pregnancy and birth!

Grace & Peace
- Andrew & Marie

Baby Updates - Doctor Follow Up

2010-10-05T08:08:00.000-07:00

Just wanted to let you all know that our doctor called last night to let us know that she saw no concerns in the ultrasound images! So ... baby looks really healthy and we have no reason why she has an irregular heartbeat. Baby right now is sizing about 6 lbs 11 oz with just a few weeks to go.

Marie wanted to pass along a recent quote from Josiah's best friend Sammie. This discussion occurred after Sammie was shaking and patting Marie's belly, saying "Wake up baby!"

Sammie (with his hand on Marie's belly): "Can I hear baby cry?"

Marie: "No, not until she's on the outside do you get to hear her."

Sammie: "Can you come downstairs to the car with us so that I can hear baby cry?"

Grace & Peace
- Andrew & Marie

Baby Ultrasound - Quick Notes

2010-10-04T16:15:00.000-07:00

The day didn't go according to plan, but thankfully Marie still got in for her appointment! After waiting all day, some computer issues, lots of phone calls, mixed up communication, mis-filing and what not, Marie's requisition was finally found at the hospital and they brought her in with little wait.

From everything that we could see our baby girl looks very health: chubby cheeks, right size and weight, good bone development, active, in the right position and so on. The placenta and fluid also looks good, so now we'll have to wait a day or two for the doctors to review the images to see if anything stands out. Because she is so far along in development, it was impossible to get a good look at her heart (bone density created 'shadows' over the organs).

So at this point this is what we have: no visible concerns but no answers for the irregular heartbeat. Marie has another NST (non-stressed test) schedule for Wednesday and we'll how baby girl sounds then.

Thanks for your prayers! We are relieved to know to that there is no physical issues to be seen, but are still a little anxious to know what the irregular heartbeat is all about. My hunch is that we're not going to come to any answer and are going to have to wait this one out of the next few weeks until baby girl comes!

Many blessings
- Andrew & Marie

Hmmm ... How Did I Miss That?

2010-10-01T21:45:00.000-07:00

So ... just reviewed my recent blogs and I realized two things: first, we haven't talked much about our soon-to-be-here baby; and second, I don't we ever mentioned here that we know we're having a baby girl!

Marie is due October 25th and we're rounding the home stretch as weeks are going to soon become days. This week she has been throwing us a bit of a scare (which has prompted me to leave this note) ... and it's not hard for Mommy and Daddy to crank the paranoia up to 11!

During two check-ups this week our baby girl has had an irregular heartbeat, and so Marie's been booked to have an ultrasound on Monday to take a closer look at her. This is a recent development and quite unexpected since her heart looked very healthy at her first ultrasound (we had cardiologists and others confirm that), so it is possible that there may be a small hole in heart that hasn't yet closed up.

Hopefully Monday results will alleviate our paranoia and reveal what's going on. If you could pray for our *PEACE* and for our little girl's health we'd be deeply grateful!

Trusting and Waiting

- Andrew & Marie

Of Stone and Trees ... Seven Months Later

2010-09-13T11:00:00.001-07:00

So it dawned on me a while ago that I never uploaded any pictures of Josiah's grave marker or of the trees that we planted at Mill Lake.

You can click the photo for a larger image. The text along the bottom reads "Our unique precious gift bless us because of who he was. His touch, smile, & eyes showed so much love" (written by my wife).

The picture board (made by my uncle) has held up really well and the photos haven't faded noticeably which is pretty amazing. We had to give the grave marker a scrub and a wash when we gathered there on his 'heaven anniversary' last month.

On that note, we didn't do much on August 2nd. We met for a short time at Josiah's grave with care givers, friends, and family and then spent the rest of the afternoon at my uncle and aunt's house. It was low-key event with only a little time spent on sharing memories and reflecting. I don't think many of us were in the mood to swap stories: we just needed to be together on that day.

Our two trees planted in memory of Josiah at Mill Lake have survived the summer. After watering them daily - yes, daily - through our scorching summer I think it's safe to say our 9:00 PM watering excursions across town are done for 2010. For those who aren't familiar with the We(s)t Coast, the monsoon season lasts from September to May ;)

The Japanese Maple did very well this summer. I'd guess that it added nearly a foot in growth and an inch or so in diameter across the base of the trunk.

The dwarf Albertan spruce - aka "a shrub" - didn't fair as well. It's location at the top of the service path near the pool meant that it was covered by a large cedar (?) tree eliminating most rain water. Further, it was daily blasted by afternoon / evening sun leaving one side a little brown and thin. But it survived and added a little growth so that's what matters.

I was often surprised how few people actually stopped to ask us what we were doing as we watered the trees. You gotta admit, this was a little unusual looking.

PS: did a re-read tonight and realized that the "... Seven Months" in the title might be confusing. It refers to a blog post I made approximately 7 months ago. Sorry if I threw you off :)

Grace & Peace
- Andrew

A Year Ago Today ...

2010-08-01T18:37:00.001-07:00

.... Josiah had a very wonderful time at his friend Sam's birthday party.

We miss you so much Josiah ...
Love Mommy & Daddy

I Miss My Sunshine ...

2010-07-08T01:39:00.000-07:00

... I miss making Josiah laugh.

I have these wonderful pictures of Josiah smiling that cycle through my desktop. Some days I'm too busy to notice; on other occasions - like tonight - it is just as painful to look away as is it to fix a gaze on my beautiful son.

He was in every possible way my sunshine. I can't say that word without thinking about him. It is forever attached to his character, his essence, and his smile. In my world the word 'sunshine' belongs to him alone. It's unintentionally so poetically fitting since his absence is our darkness, our shadow, our grey days of mourning.

The absence has continued to creep along and almost a year has been swallowed. I have no clue what that bitter anniversary will bring. I'm scared, scared of reflecting, scared of forgetting, scared of looking deep into my grief and not being able to see the bottom.

... You know, I wish I had the drive to write here on "up days" - seems like I'm always posting in the midst of days of brokenness ...

I think this blog often takes a somber note because I refuse to whine on Facebook! Speaking of Facebook, I am reminded that I so thoroughly enjoy clicking through photo albums and unexpectedly finding pictures of Josiah. It blesses my soul, in a smiling and crying sort of way that causes my hear to skip a beat and be pummeled all at the same time.

Last month I was reminded again how I love finding scraps of Josiah: pink instill tips, suction catheters, a fiber from his glowing fiber-optic night light. I treasure them. Literally. These little bits often end up in my drawer, or I will leave them as they were found in the van or on the carpet so that for a little while something "normal" has returned.

They remind me of the days when our home was littered with these bits, hand-held relics of happy days. I can't bring myself to tossing these items: when Josiah was with us, we couldn't get these annoying little bits of trash into the garbage fast enough. Now I cling to them, dreading the days when I no longer accidentally discover these little reminders.

It hasn't gotten easier, in that it hurts just the same. The tears are still as hot and fierce, the rhythm of hard days still unpredictable, sometimes in rapid succession sometimes calmly stretched over great distances. The scenes and emotions surrounding his death are still so vivid that sometimes it is all that I can see. I hate how Josiah's lifelessness dominates the vast riches of glowing memories I have stored in my mind. I know there will be a day of relief, when the images of that darkest time recede and I discover happy memories have taken its place. Yet until then I suffer and wait for that time when I can reflect extravagantly, a time when I can let down my guard and let my thoughts wander unbridled because I know the darkness will not crush my spirit nor assault the precious memories that I protect.

Looking back, it feels as though I'm on an uphill trend of functionality, as if my mind and body has been able to pull itself more together and compensate for my broken heart. The few we know who have shared in similar journeys have prepared us - it doesn't get any easier.

Six weeks ago or so, I had a first of sorts: I had a milestone moment as I was starting to wake. It was the first time I had a spontaneous (out of my control) dream that didn't drive me into a deep, raw, unabating sorrow; rather, it was a brief moment of warmth and elation, an untainted and pure reminder of a happy time. This dream - more like a split-second snapshot, really - was of me cleaning Josiah's neck. How I miss taking care of him, the gentle wiping of his neck, the methodical rhythm to the procedure, the playfulness that accompanied all the precision and severity of the situation, the trust, the challenge, the satisfaction that came from completing the task, and the big hug that would follow so that Josiah knew that we were proud of him.

Up to this point, every unprovoked spontaneous memory of Josiah that would appear in my dreams would drive a deep searing pain into my soul. This time, it brought happiness, without the bitter sting of reality that always followed. For that I'm grateful. There will be a day when I will see Josiah not through the fog of fading memories or the distance created by photos: I will see and hold and kiss my son. And that day will be good, the day of sweetest joy.

The first weekend of June brought an unexpected reminder of another broken tradition. Advertisements and testimonial videos for the BC Children's Miracle Weekend flashed on the TV and in an instant we realized that our cycle of participation in that event had unceremoniously come to an end. No interviews over the phone, no ninety-second recording at the golf course, no airtime on the radio. It was a hollow and bewildering realization to know we were no longer a part of the promotion and celebration of this event.

Mother's Day and Father's Day are behind us. Marie and I choose to not dwell on it. For Mother's Day we latched onto a 'tradition' that we started with Josiah last year: A&W in the park. It seems so many of the 'traditions' that Marie and I started in the past 11 months have come because of Josiah's absence, so it was so important for us to embrace a tradition that we had with him. It's simple, but it means the world to me.

Our church continues to take good care of us. They anticipated the sorrow of these two holidays, and blessed us with their thoughtfulness. The gifts didn't matter so much to us - and that's coming from a guy who loves gifts! - the fact that they wanted to stretch out and show their love is what leaves the biggest impression.

It is late. I was hoping that tears and the lateness of the evening would have chased the caffeine out of my system so that I can sleep. It appears that I'm going to have to find a book.

In love.
- Andrew

Getting Some News - The Lengthy Explanation

2010-05-11T22:09:00.000-07:00

We kind of left you all hanging when we posted briefly after we received information about Josiah’s genetics and autopsy. That was nearly two months ago .... sorry. It’s been a busy and full season with lots going on in our lives. Here is an extremely long post for you to read through.

Marie already mentioned it her post yesterday – yes, we’re expecting another child in mid-October. As she hinted at, some of that fullness of the last couple of months is wrapping our heads around the fact that this pregnancy has brought challenges. We had a lot of tests to do to make sure that Marie and I are “biologically compatible” and such, and this pregnancy is going to be monitored closely by the geneticists at Women’s Hospital. And the paranoia, as one can suspect, flares up here and there. But for the most part we’ve been able to keep our wits through the past few months.

This pregnancy has been very much the opposite of what she experienced with Josiah – and that, in itself is a good thing. Marie was quite nauseous through the beginning and went a month without much sleep. Unfortunately it seems that she is entering another stretch of poor sleep and so your prayers would be appreciated.

Further, Marie was carrying twins for about eight weeks until one stopped developing. This happens – we’re not the only ones – but it certainly doesn’t make it any easier. It brings up a lot of questions and “what ifs” that I have never explored before. Some days it’s hard not to become bitter over the simple realization that we’ve lost two out of three children in our marriage. Lost. As another pastor and I discussed last weekend, it’s not so much that a person is ‘lost’ in death – I know exactly where Josiah is, and so ‘absence’ is probably a more accurate term. Thankfully everything is looking well for the child that remains in Marie’s belly.

I should probably spend some time bringing a little closure to Josiah’s genetic and autopsy results. Two things are best noted right from the top: as it relates to Josiah’s genetics, there still is aura of ‘unknowness’ because his seventh chromosome was unlike anything they had ever seen before. So landing on the right label for his syndrome is difficult even for the educated geneticist. Further, while the autopsy provides a few answers as to what may have contributed to Josiah’s death, there’s no way of knowing why he went into medical distress in the first place.

Think of it a healthy chromosome as a well-constructed Jenga tower, all the blocks neatly stacked just ready to go. The blocks represent genes and the tower they make is the chromosome. Josiah’s chromosome 7 was missing a bunch of blocks: it’s not as though some of the blocks didn’t fit quite right or with rough/banged up: there were a bunch that just weren’t there. And it is the amount of genes (aka ‘blocks’) missing that cause geneticists to be amazed because this is so rarely seen.

GLI 3 (pronounced “glee”) in the seventh chromosome was the specific gene that was studied. When this gene is mutated (present, but not right) it categorized as Pallister-Hall Syndrome. When this gene is missing (not there at all in the seventh chromosome) it is categorized as Greig Cephalo Polysyndactyly Syndrome. Josiah was missing GLI3 ... and more, which put him in a category all to his own. Seriously. The National Institute for Health published a paper in the fall outlining some of the findings from their studies and there is Josiah at the bottom of the chart with the biggest chromosome deletion of every patient on the list.

So, in brief, Josiah was always understood to have Pallister-Hall Syndrome since it explained most of his anomalies, but we now know his genetic makeup was even more precarious than we all thought. He was through and through a miracle child: he should have never developed to full-term alone live a wonderful 2 and ½ years. And while it doesn’t change it anything, this reality helps us appreciate our time with Josiah a little bit more as we come to grips with how much of a gift and a miracle he truly was.

In regards to his autopsy and what triggered his death, there is even more ‘unknowness’. Genetically, Josiah shouldn’t have been living in the first place. His mind shouldn’t have been able to function like it did. At first diagnosis as an infant, moving his fingers was supposed to be outside of his abilities, and yet he was able to do that and so much more.

What Marie and I couldn’t see, is that every time Josiah went through a circumstance where he was deprived of oxygen (his ‘blue spells’ during his first year, seizures ,and sleep apnea), bits of his white matter in the brain were damaged along with neurons responsible for breathing and recovering, losing bit by bit the ability to recover with resuscitation.

We never considered that Josiah’s mind was being damaged after each of these episodes because he never demonstrated a decrease or setback in ability: despite his spells, seizures, and apneas Josiah continued to develop and do new things. His abilities never plateaued or diminished. Yet unbeknown to us, there were layers upon layers of damage in his brain that we couldn’t see.

Ultimately, this lead to the point where he lost the last neuron responsible for instructing the mind to breathe again and it was physically impossible to recover from his last episode.

There was no cause discovered, from the autopsy, as to why Josiah went into distress in the first place on August 2nd. Our nurse that night described that Josiah was responding as if he was in a seizure, but it was unlike anything Josiah had demonstrated before. It was quick, and there was no fight in Josiah, no evidence that he suffered or even tried to recover. When I told the geneticists that it seemed to me like Josiah’s mind had just turned off and that there was no coming back, they agreed that it was the best way to understand the situation.

Sorry to keep many of you waiting so long for this fuller explanation. We haven’t been very consistent in posting new material, and as the nature of this blog has shifted in the past nine months, the urge and desire to post has certainly diminished and taken new meaning.

Thanks for your friendships, your continued prayers, and warm thoughts. It is good not being alone.
- Andrew & Marie

Mothers Day

2010-05-09T10:06:00.000-07:00

Mothers Day??

What a bizarre mothers day. I have no son to hold and cuddle or show off. I have a child who I love inside of me that I can talk to. But my first child of love is not with me. I have no card from him this year or the next years to come. What a strange reality.

I miss how Josiah would show me love. He would look me deep in the eyes and smile. He would get so excited when I came in the room when he just woke up. If I was napping when a respite worker was here he would be so vibrant when I woke up and came to him.

It was wonderful to have started to feel my new child move inside of me yesterday. It made it a very special mothers day gift from our new child.

Then the next weird thing of life. I knew the day we conceived this child, I was insta tired and just new. Then whenever I thought of our new life inside of me I thought of 2 new lives inside of me. It was amazing to just know we were pregnant with twins. In my doctors office they have an ultrasound machine. It is great. We went in the Tuesday before Easter and got to see our new baby. We saw our wonderful baby moving and healthy. I was a little confused because I thought we were carrying two. I thought at the time I was just wrong. Well, the following Monday we went in again to see the baby with some friends. This is when we saw the twin that I was carrying. What a whirl wind of emotions. It was confirmed to me that we were carrying twins however, the twin had stopped growing at around 8-9 weeks. I am blessed to know this. Most woman never know they were carrying twins in the way that it happened to us.

Depending on what you believe about conception makes the next part a muddy point. I like to believe that I have another child in heaven hanging out with Josiah. I do not have name but I have nick name for the child of our hearts. Nubben. The child looked like a little nubben, stubby arms and legs, a big head and once beating heart.

So I am a mother of three with only one to be in my arms in October. I feel blessed and shot down all at the same time today.

The best part is I do not need to worry about these things, I know that God has it all in control. Humanly the control that He has may not make sense when it is carried out, but, we are a fallen man in need of His control and salvation. We can not possibly understand the mind of our Lord God, the creator of heaven and earth. We just need to have faith.

To my children,

I love you Josiah and will keep you forever someday. Oh how I miss you and wish you were here with me. Yet am so excited you are without pain and in the joy of heaven. You will always be my baby.
Nubben, if it is Gods will, I am excited to meet you some day and you will always be the child of my heart.
To the child inside of me I am so excited for the day I get to hold you in my arms and look you in the eyes and tell you I love you.

Love you, Mommy.

~Marie

Getting Some News - Follow Up

2010-03-18T17:55:00.000-07:00

Well, we got that done. The quick summation is that we heard pretty much what we expected to hear: Josiah was missing a large chunk of chromosone 7 (extremely rare) and that the exact cause of his death is inconclusive. We got some reading we will do over the next bit to bring a little more depth to our knowledge (the autopsy report and the genetics results, including a paper written regarding Pallister-Hall and how Josiah's genetic makeup fits into the spectrum). I'll write in more detail at another time, but I'm pretty tired and I got to shift gears and get ready for youth.

Thanks for the prayers.
~ Andrew & Marie

Getting Some News

2010-03-18T08:18:00.000-07:00

Today at 1:30 PM Marie & I have an appointment at BC Children's regarding Josiah's genetic results and his autopsy. Answers are good, but it's painful. Your prayers on our behalf would be appreciated.

~ Andrew & Marie

Mommy Misses You!

2010-03-14T10:33:00.000-07:00

Today I feel tired and sorrowful. Oh how I miss you Josiah. I just want to hug you and tell you that mommy loves you.

I miss holding him and having him lean on me, look up at me, smile, and then go back to the book, conversation, or TV that we were watching at the time. I miss how he would hold my hand. I miss his smell. I miss his smiles. I miss his touch. I miss his excitement about the same old things. I miss his enthusiasm about seeing the next page in the story. I miss his partying at 3am. I miss the noise of his toys. I miss feeding him big boy food and seeing his faces with new flavors. I miss his CD's (which I refuse to play). I miss laying with him for naps. I miss laying beside him when he just would wake up. I miss how he would reach for my face with such gentleness. I miss how he would wave his hand in the air until we would give him attention. I miss his 'peak-a-boo' game. I miss his laughter. I miss comforting him when he cried. I miss bath time. I miss 'ball toy' time. I miss cuddle time. I miss going for walks with him. I miss playing at the park with him. I miss ministering with him to everyone who would stop and talk. I miss being with him outside under the trees. I miss being at the zoo with him. I miss traveling with him. I miss going to the art store with him. I miss buying him new clothes. I miss play dates with him. I miss showing him off to people we would meet. I miss playing piano with him. I miss 'tigger toy joy' during trake tie changes. I miss being a mom. I feel so empty.

Of Stone, Trees, and Other Things

2010-02-18T11:08:00.000-08:00

The past few months have brought some very difficult milestones. We had our first Christmas without Josiah, we celebrated his birthday without him, and the calendar tells us it’s been six months since he died. It would be inaccurate for me to say that it feels like forever ago that we had Josiah with us; rather, it feels like a completely different life, a dream that only exists in videos, photos, and our memories. We all died that day, one way or another, and we are creating a new life in response.

It's hard to say what anniversary will be more difficult: Josiah's birthday or his death. I suppose time will tell.

There has been no inner urge for me to write publicly over the past few months. I have been filling my time trying to find my new self in this 'un-asked for' reality. I’ve been busying myself with work and there are days when I shock and scare myself by how little Josiah crosses my mind. And then there are the days that I can think of nothing else: debilitating and paralyzing, numbing, and crushing. My precious son Josiah, why did things have to be this way?

As thoughts and memories flash in my mind I jot them down, but the enthusiasm and interest in telling our story has waned. Like some many other aspects of my life, I know this is just a natural consequence of mourning – that in time the things that I enjoyed will again bring me satisfaction and no longer be a burden. But for this stretch of time, this online journal has gone silent. It obviously doesn’t hold the priority it had when Josiah was with us, and while I know it’s a meaningful form of communication and encouragement, I don’t know how consistently I will write here. Yet, here I am toiling over a very lengthy post! Time will tell.

For now, most of my energy and attention is being poured into Marie and work. Slowly I have recovered an "almost-back-to-what-it-used-to-be" rhythm of work, but of course it will never be exactly what it used to be: there are 'lapses' – or, in better terms – stretches of time when grief moves more to the forefont of my mind, heart, and soul. And again everything in life goes grey until bit by bit I can return to the patterns and habits of life that I aspire to. Besides, for two and half years (almost half of our marriage) our 'normal rhythm' was influenced, anchored, and determined by Josiah. And I miss that rhythm, every single part of it.

Post-Christmas was more difficult than we expected. We were caught off guard by the greyness of life, the sorrow, the emptiness of it all. It was very much a hollow time for us. We intentionally filled our days leading up to Christmas with family, people, and activities, but the lull of nothingness after Christmas was when our grief caught up to and overcame us.

Strange things we have noticed. At almost every turn we avoid taking pictures. Whereas with Josiah we took pictures ceaselessly, we pass through these seasons with no desire to record its images and memories. Christmas was a ritual, not a celebration, there was laughter and a smile, but only to get through the days faster. We couldn’t wait to have Christmas behind us: Boxing Day brought the decorations down and the tree through the season had never been so sparsely decorated.

Approaching Josiah's birthday brought similar experiences. For me, there was a lot more weeping than there had been in the days since Christmas, and it was a fight to complete even the simplest of tasks. The fog of it all – the ever-present grief, the tears ready to spill at a moment's notice, the cloud of grey that penetrates every second of the day – subsides slowly, but unpredictably. It comes when it comes, and it goes when it goes.

Josiah’s photo albums and videos are the most difficult things for me to go through. I have avoided them almost completely in the six months that Josiah has been gone. Video scares me the most: to see Josiah 'alive' before my eyes is so. extremely. painful. I haven't been able to watch a single video of Josiah straight through since his death. There are about a dozen photos that don't catch me off guard as quickly, images that I'm familiar with because they are on our walls or on my desktop. These pictures are comfortable and don't break my heart because I see them every day, but when I glace upon a fresh photo, or really pause to look into Josiah's eyes in the images that I’m surrounded by - I melt. I am nothing. I become the emptiness that I feel. Tears are released that I never knew I was holding back, composure disappears, and I'm grieving the loss of Josiah all over again.

I thought the coming spring would lift my spirits, and that the sun would be an antidote for the greyness in my heart. Instead, it only served to remind me how much Josiah loved to be outdoors: to go on walks, to see the trees, and to bask in the sunshine. It was a wonderful time of year with him, and I miss him everytime I look out a window. He would just stare out the window, asking in his own way to go outside and enjoy the weather ... I long for those days.

Another thing I discovered: Josiah's scent never remained. The smell of his presence left our home and my mind so fast. Rather, it is the smell of Josiah's absence that lingers all around this place. Plastic. Sterile. Clinical. To me, putrid and unbearable. For all his stench during his lifetime – his nauseating poohs, nasty farts, and frequent pukes – the odour of his disappearance is the worst.

And I crave his touch. The gentle fingers, the close snuggles, the warm grip, his arm wraping around mine. No infant or toddler can mimic how he touched.

Before I close, some noteworthy things. In November Josiah's gravemarker was laid and we were able to gather with his caregivers to remember (as we also did on his birthday this week). In that same month, we planted two Josiah trees at Mill Lake park near the pool. A Japanese maple was placed in the landscaping near the stairs that come down from the ball diamond parking lot, and a dwarf Albertan spruce was planted near the top of the service path by the pool. We are blessed and so encouraged that the City of Abbotsford was excited to use these trees and gave us this opportunity – Josiah loved his walks around the lake and playing on those playgrounds. I will put up pictures of his gravemarker and the trees sometime soon ('soon' being a relative term, I suppose).

In December we received the preliminary findings regarding Josiah’s genetic makeup. In spring '09 we had sent our bloodwork (mine, Josiah's, and Marie's) to the National Institute for Health where Pallister-Hall Syndrome is studied. Those test results have been confirmed at BC Children's this past month, and we are scheduled to meet with a geneticist in March to discuss the findings. As best as we can understand at this time, Josiah was literally a one-in-a-million kid. The test results show that Josiah was missing a chunk of a chromosome; that is, he had a few genes missing. Whereas syndromes are caused by genes present but mutated, Josiah's problem was that some genes were completely absent. It’s like having a ladder with a portion of a rung missing.

We'll learn some more about it next month, but the crazy thing is that Josiah didn't have Pallister-Hall Syndrome, because PHS is caused by certain genes being mutated. Josiah was in a class all his own, yet Pallister-Hall Syndrome is the most effective way to describe his challenges. It's unlike anything NIH has on record so his test results will be stored in their system to see if any matches ever come to pass.

Finally, Marie's grandmother passed away on February 3rd, almost exactly 6 months after Josiah. At 95 years old, she was ready to go to heaven but it still brings sorrow. Josiah was remembered in her obituary, a kind gesture that we weren’t expecting, and Marie was able to pay tribute to her grandmother at the memorial. As difficult as it was, we are glad that Josiah was able to meet his great-grandmother on this side of heaven. As well, it was good to be with the family last week as we knew they wouldn’t be able to with us to remember Josiah's birthday.

Thanks for all the prayers that continue to be said on our behalf. We have no words to express our gratitude.
- Andrew & Marie

Happy Birthday Josiah

2010-02-16T15:52:00.000-08:00

... we miss you.

~ Love, Mommy & Daddy

Merry Christmas Josiah

2009-12-09T11:01:00.001-08:00

(Christmas 2008)

There are many things that could be said, but I'll just say this: it's not fair Josiah that you get to spend Christmas with Jesus and we don't.

We love you so much it breaks our hearts.

Our "Bug-a-boo", our "Handsome". Our "Jo-shmo", our "Sunshine".
We miss you Josiah.

~ Love Mommy & Daddy

Grey Day Musings

2009-11-16T13:20:00.000-08:00

While I have not been posting frequently on this blog, I have been writing a little in privacy. I have a on-going file on my computer that I jot down my sentence-thoughts in as they pop into my head. I have a journal on my nightstand that allows me to write reflections to God on the nights that I have the motivation. Sometimes these notes make their way into a blog post, sometimes they are too raw and unfinished, and I'm not really interested in having to explain the how's and the why's of these too-real emotions and thoughts.

The mind and heart is a curious thing. Marie and I have commented a few times to others that right now it feels like our time with Josiah was just a dream. Why do we feel that way? We are sound of mind, we can reason with ourselves that Josiah was real. We see all around us the lasting impact, the physical signs that we had a son for 2 1/2 years. There are pictures, toys, and tokens all around us the point back to his real-ness, but it all has some 'out-there' quality to it, like a slight haze has formed around these memories causing us to legitimately ask, "did it really happen? Did we really have a son?"

So much of our life has gone back to what it was three years ago, as if we never had Josiah. I wonder if thinking about Josiah and recalling our time together has this 'dreamlikeness' to it because we are often keeping the memories at a distance. We're not trying to forget or ignore him, but we sometimes choose to not fully embrace and stare right into the face of these memories because it would completely incapaciate us. We wouldn't be able to get out of bed for days. And so we've come to subconsciously realize that to get anything accomplished in a day we have to put the memories and thoughts of Josiah just off to the side, still quite in view, still felt, but not front and centre, not that which we orbit around. And so we've created this 'at a distance' relationship with what remains of Josiah and it tricks our mind into giving us the same sensation as waking up from a dream.

The absolute worst sensation is waking up and for a fleeting second believing that Josiah is still with us. The split-second of half-awakeness where I'm coming out of sleep and being warmed with the anticipation of walking into Josiah's room and saying good morning. It cuts ... so ... deep. I'm crying even now as I stir up the memory of these occasions. It is such a slap in the face, and incalculable shock and for a few minutes I feel like I've lost Josiah all over again.

My mind still has echo's of what life was like 4+ months ago. It still has the faint memory of our daily routine. I'll be making coffee at 7:00 AM and I'll be hit with the echo of the past when I would be in quiet desperation wishing that Josiah would sleep for another 45 minutes so that I could wake up and be ready to take care of him. And he never would sleep those extra minutes. He would always wake up moments after the nurse left because he was so excited to play with mommy and daddy. Or it will be 8:00 AM and it would dawn on me that it is time for Josiah's meds. I'm supposed to be in his room right now, crushing pills and drawing up syringes while he plays with his mobile. And then comes the worst one-two punch: the first, that Josiah isn't in his bedroom and second, that I will never see him again this side of heaven. The pain is excruciating.

Our journey has brought me a lot of insight into the human experience. I'm amazed on how most days I can hold myself completetely together on the surface. That, as I spent time with strangers, no one would be able to guess or sense the deep pain and turmoil that I am carrying in their presence because it isn't registering on my face. And I ask myself, as I go out and interact with people, who else is having similar experiences where they appear to be fully functioning and pain-free on the surface, yet deep in their soul there is a tumultuous storm?

I also never realized how much 'death' shows up in our conversations and daily living. I've done a good job at ridding comments such as "that's so gay" and "don't be retarded" from my vocabulary because I understand the hurt those phrases can cause those who are gay, or close to someone with a handicap. But the frequency of even innocent comments like "dead end" or "the situation looks grave" or "don't die!" astounds me because I'm so sensitive to all right now. And I wonder if other people who have had loved ones die feel the same thing?

And there's a lot of dying on TV, which makes me wonder how a population can still tune into these shows. Not that I'm against these types of episodes; it's just that enough people have had their lives changed by the death of someone close to them that I would have thought there would be a less demand and interest in this stuff. If you've ever seen a death, every portrayal on the screen is uncomfortable. Sometimes when I watch a medical drama (Scrubs, etc) I have the morbid thought, "nope, it wasn't like that. If only it was that easy and peaceful." Other times the drama and the action hits a little closer and I have to flick the channel. I've been given new lenses to see the world through, and it's creating in me an empathy that I never had before. Death sucks.

With hope and promise.
- Andrew & Marie

Where We Are

2009-10-09T15:10:00.000-07:00

Every week I begin with the desire to post another update into our lives, but with each good intention the week fills with work and weariness and - to a degree - the dread of facing my own thoughts and emotions. To look into the wound is to re-live the pain, and while life brings balm and time brings scars to close the wound, sometimes I look away from the wound so that I can attempt to re-enter a rhythmic life.

In my conversations yesterday it came up twice that there is no predictability in the journey of grief. There is no formula, no pattern, no firm way of gauging the process. Some days it's three steps forward and two steps back; some days it's three or four steps back; some days there is no stepping at all.

Marie has a job, a real gift from God. She's been working three weeks now at MEI Middle School as an EA (Educational Assistant). She's working alongside of 5-6 grade seven students who have learning disabilities, and it's been an answer to prayer. Marie wanted to avoid returning to lifeguarding - since it was a dream she wanted to pursue with Josiah - and she understandably was not going to teach First Aid. As a part of her employment, she is taking one night class at CBC and aims to complete her EA Certificate over a period of two years. Her time at MEI has been very rewarding and encouraging, and she's glad to be a part of the faculty and work one on one with students who struggle in school. It's exhausting work - just living right now is fairly draining - yet it takes her out of the house and allows her mind to pay attention to other things.

Fall has begun which means all my ministry involvements at Arnold Community Church have restarted for the season. The last three weeks I have pushed myself into full-time hours, but I am beginning to sense that my body is not quite ready for that as I have been battling a cold (or something) on and off for almost two weeks. Everything takes a little more time now, everything is more exhausting, and the ability to focus well hasn't completely returned, and I'm afraid that my expectations of my current self are they same that I would have held myself to 4 months ago, and course that just won't do for the moment. But I'm grateful for my job and absolutely stunned (in a good way!) for how our youth group has expanded for this year. God is good.

We have gone to Josiah's graveside often, but not for the last couple of weeks. Life has been too busy, but I'm getting the inward sense that Marie and I need to return soon. The graveside marker has not arrived yet, but it should be placed by the end of the month. I have posted pictures below of what we have placed there in memory of our son.

A close-up on the frame that my uncle Ron made for Josiah's collage ...
plus a "Cars" spinner that we would put on his stroller during walks

The tin was given to Josiah by his great-grandmother when he met her for the first time 2 weeks before he died. On the cover we had written messages for Josiah (already washed away mostly) and inside is a BCCH "Superhero" bracelet, a "Mommy's Little Monster" bib and a "Daddy's Little Helper" bib, a trach and a trach tie.

We miss Josiah terribly. It's our cry and whisper as we fall asleep at night, and it's our breaking heart through the day when a fond memory is triggered. Many things - it feels - are fading and being lost to time, even though it's been only two months. His touch, his scent, his sounds, the warmth of his closeness - they are slowly becoming only a memory of a memory.

In a way, it feels as though two and a half years of our lives have been erased. We no longer have our child, we no longer are "doctor and nurse", we no longer have our house filled everyday with 2-3 people who were a part of our caregiving family. Almost every day in those two and a half years revolved around our Josiah from morning to night and sometimes through, and it's been hard to find our footing in this new routine. CS Lewis had some good things to say about that in his Grief Observed, but I'll save that for another day.

A term I've been using a lot as I talk to people is "bittersweet". That is what our lives have become. Maybe over time we will experience more sweetness, but for the moment it's an even fifty-fifty. All our opportunities, all our time together, all our 'freedom' has come at a cost, being seperated for a time from our son. Marie and I find it near impossible to seperate our excursions or new livelihood from the bitterness that comes from be away from our son. We may enjoy the moments that we are given, but the experiences are always tainted by this undesired reality we find ourselves living in.

There is always more that could be said, but I'll call it evening for now. Thanks for your stories of Josiah, thanks for your condolences. Thanks again for all your continued prayers. That is the biggest gift and support you can give Marie and I on our journey.

Grace & Peace.
- Andrew & Marie

Readings - Mourning

2009-09-14T10:07:00.001-07:00

For everything there is a season, a time for every activity under heaven.
A time to cry and a time to laugh. A time to grieve and a time to dance.
~ Ecclesiastes 3:1, 4

Blessed are those who mourn, for they will be comforted.
~ Matthew 5:4

Be happy with those who are happy, and weep with those who weep.
~ Romans 12:15

Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared.
I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”
~ Revelation 21:1, 3-4

--------------------------

As I was gathering passages of Scripture to guide my heart and steps, I stumbled upon an obscure passage in Amos which was affirming and gut-wrenching all at once. The prophet is telling of a coming day when all the joy in the lives of the Israelites will be replaced with great sorrow, and he uses the death of an only son as an example of how bitter their grief will be (Amos 8:9-10).

Sometimes it feels like our grief is bigger than me, bigger than I can handle, bigger than I can work through. And in the mind of the prophet Amos and the people he spoke to, losing a son is about as worst as it can get. Like a brief burst of sunlight through an overcast sky, some days you can find solace in the unlikeliest places.

Thank you for your prayers.
- Andrew & Marie

The Last Month (or so)

2009-09-05T18:24:00.000-07:00

Marie and I were saying again last night that it has felt like forever since we last held our Josiah, played with his hair, saw his smile, or felt his fingers. It's been just over a month, but it feels like a year has past. I waited 25 years to finally meet our son. How long will it be until we see him again? Another 25 years? 50? I can't wait that long. It's just so long ...

After Josiah's memorial we were able to have a couple more days of being with family before they all dispersed for home. We had a somber but heartwarming gathering of respite workers and nurses at our home one afternoon, and Marie and I took a couple of days to go through Josiah's things, and organized what supplies needed to be sent back to their respective companies.

There has been a lot of "emptying" and "undoing", and it's all been with pain. It's amazing how conscious you become of the "lasts" along the way: the last bag of dirty diapers you throw in the garbage, the last load of his laundry, the last time you handle his equipment. His stroller has been taken apart and the wood carriage underneath that held all his supplies has been recylced. His carseat has been moved to the trunk. His bed will be taken a part some day - who knows when it will be put together again.

The shelves and corners of our home have been emptied of his medical equipment: oxygen tanks, suction machines, ventilators, cables, his chair, batteries, food cans, and boxes of unused medical supplies. Silly in a way, but this hurts more than folding his clothes in a box. All have been shipped off back to their companies or to other families who can use them. His medicine container has been emptied. His drawers have emptied of clothes we've borrowed from other families. And really, the house is empty - it's just a shadow and shell of what it was 6 weeks ago: a warm, welcoming, loud home has become cold, silent, and lonely, a mocking reminder of what was.

Marie and I took a few days to be by ourselves on Vancouver Island. We did what we could to distract ourselves by taking in sights, walking, and shopping, but most of the time it was just about wasting hours until the next day. Josiah would have loved the ocean and the walks, and it felt like we were taking a holiday without him, that he would be home when we returned. After the Island, we went out to the Okanagan for a few days to be with my parents and connect with close friends. The trip and the time was difficult because we had just been there with Josiah a month earlier and things had never been happier.

We haven't spent a night at our home yet, and so we've been enjoying the hospitality of my aunt and uncle. We go to our house for a few hours at a time to get things done, but the absence of Josiah and the memories of his death are too crippling for us to be there long. I returned to work about two weeks ago, trying to maintain a pace that is healthy and sustainable. It has been slow, exhausting, and difficult to focus, even the simplest of tasks can wear me out. But each week I'm able to accomplish a little bit more so I remain positive.

This past week had Marie's parents join us, and it was good to be around more people again, especially for Marie when I had to work. They were able to be here for Marie's birthday, but there was nothing happy about it. September 2 is now Marie's birthday and the month anniversary of Josiah's death, and while it was good to be around White Rock and be with family it was a day packed with sadness and tears.

We've been by Josiah's graveside three times now. On his plot we've put a small tin that holds a few memories: a tie, a trache, a nose, and 2 bibs: "daddy's little helper" and "mommy's little monster". We wanted to post the collage of pictures that I had made, so our uncle made a beautiful signboard for it and we placed it there last week on Marie's birthday. Last week we also made the final decisions with his tombstone and it should be completed within 4-6 weeks.

There are still a lot of tears. We weep without warning and most of the time it feels like we could never stop. Days are filled with lots of sighing and drooped shoulders, and often we catch ourselves staring into nothing with glazed over expressions as try to understand and come to grips with our loss. Grief is an expression of love, for if you love someone you will always grieve their absence. And for that reason, we've discovered, grief is never a burden nor does it end, but it becomes a part of your life's rhythm, as regular as breathing, eating, sleeping, and loving.

Thanks for the prayers, the notes, and the hugs along the way.
- Andrew & Marie

Welcome

2009-08-30T14:28:00.001-07:00

Not much is needed by way of introduction since most of you would have been directed to this blog from Drew's View, the site where up to this week I posted about the life of my son Josiah. If you are new to this story, this blog tells the journey of my son Josiah, from his birth to his death, and the story that continues to unfold even though he is only with us in memory.

One small thing to note: to simplify the moving process, I have started afresh with the Vistor Cluster Map (see at the bottom of the sidebar). Seeing all the vistors from around in the world that tune into Josiah's story is such a novelty - and blessing to our heart - and so I have posted the latest map image as well as the two previous archived images (the map resets every year). The vistor counter (also at the bottom of the sidebar) has not been reset.

20 Apr 2009 to 26 Aug 2009: 9,049 visits shown above
Statistics updated 30 Aug 2009@04:48GMT: 9,567 visits
Total since 19 Apr 2007: 92,236.

Current Country Totals
(from 20 Apr 2009 to 26 Aug 2009 )

Canada (CA)	7,427
United States (US)	1,461
Australia (AU)	33
United Kingdom (GB)	26
Germany (DE)	17
Panama (PA)	16
New Zealand (NZ)	9
Ireland (IE)	6
Netherlands (NL)	6
Italy (IT)	5
Philippines (PH)	4
Spain (ES)	4
France (FR)	4
Thailand (TH)	3
Korea, Republic of (KR)	3
Chile (CL)	3
Belgium (BE)	2
Sweden (SE)	2
Russian Federation (RU)	2
Japan (JP)	2
Singapore (SG)	1
India (IN)	1
Uganda (UG)	1
Indonesia (ID)	1
Norway (NO)	1
Peru (PE)	1
Czech Republic (CZ)	1
Guam (GU)	1
Mexico (MX)	1
Bermuda (BM)	1
Europe (EU)	1
Switzerland (CH)	1
Hong Kong (HK)	1
China (CN)	1

Gratefully.
- Andrew & Marie

Josiah's Memorial - Bulletin

2009-08-29T12:47:00.000-07:00

Here is a scan of the bulletin that was printed for Josiah's Memorial.

(front and back cover, front page on the right)

(inside pages)

- Andrew & Marie

Josiah - Desktop Collage Wallpaper

2009-08-27T14:29:00.000-07:00

I've been playing around with some photos and created a collage of Josiah pics which looks pretty good as a desktop background. You can download the image as well if you'd like: click the image to view it 'big' and then right-click it to save the file and/or set it as your desktop image. It lines up well on my laptop, but who knows how it looks on bigger screens ...

FYI, the tree clipart was a free image that I inverted (flipped the contrast, I think) and the background (at least that what you can see of it) I'm pretty sure is this guy's work but I can't remember the site I originally downloaded it from.

I'm a PC and I'm 28 ;)
- Andrew & Marie

Josiah's Life Story

2009-08-25T20:24:00.000-07:00

Marie and I held for ourselves the privilege of writing out and sharing Josiah's Life Story at his memorial. Despite the emotions and busy-ness of the time, putting our thoughts to paper wasn't as hard as I thought it would be, and getting up to share seemed at times even easier. I suppose it was because the last 2 1/2 years brought so many opportunities to share about our son, that doing so again on such a grand scale seemed so very natural.

I have posted the full transcript of Josiah's Life Story below as it was read at his memorial. It's long, but considering how much as been said and written about our precious boy I suppose that it could have been much longer.

=================================

INTRO - Andrew: Josiah’s story isn’t about medical facts or beating the odds. It is about a son who was supported by the Lord and left a significant impact on everyone he met. Our words, emotions, and stories we share here today is not the complete testament of our son’s life because his story is etched on all of our hearts. It is for this reason, though we’re standing up here today, that Josiah’s life story will only really be heard later this evening when others get to share how knowing Josiah changed their lives. As one who has journalled his life since the beginning, this is only a small and incomplete account of parents who love God and loved the son He gave them through and inspite of the challenges. The legacy and impact he leaves behind is much like the trees he so adored: it will grow, spread, and multiply as his story continues to shape our own.

Marie: Our son, Josiah Haak. Ohhh, how we miss him.

Being Pregnant was such a Joy. Josiah was such a monkey inside my tummy. He constantly let me know he was there by going on carnival rides almost every hour. The umbilical cord was a complete spiral when it came out. His Favorite time of day was, of course as all us women know, when we are trying to sleep. However I was able to sleep through it somehow.

I continued life exactly the way it was. I was still active, did a triathalon, tought aquafit, swimming lessons, and supervised 32 staff. This was how I thought life was always going to be. I would take my child to all of these things after he turned 1.

Marie: When Josiah decided it was time to see this world we were completely caught off guard. I was only 35 weeks along.

It was a Thursday night and I had done my last day on the pool deck because it was that day I realized I was useless. We finished Junior youth and I tried to sleep. I thought it was bad cramps but Josiah knew otherwise.

Present at the birth were, Andrew, Kelly and Alex Shaw, Dr Cindy Shaw and a slew of professionals I did not know.

Josiah was born 1616 on the 16th of February. Just like the meaning of Josiah’s name he was immediate supported By God. I thought originally that he was going to be a girl because I heard distinctly that the name was to be Isabella when I was first pregnant. But I soon realized that it was the meaning of Isabella that God wanted for us to know. He was to be consecrated to God.

Andrew: One of the things that was evident right from the beginning were the signs of God at work. They were more than just coincidence strung together over the last 2 ½ years, but vivid expressions of God’s purpose and provision despite the challenging and chaotic journey it became. We had settled on Josiah’s name just five days before. It was pretty evident within minutes that we’d be leaning on God’s promises we found in Josiah’s name. While Marie was still a loopy from her first drug experience, we were dealing with the sober reality that Josiah may only have minutes to live. Josiah came into the world not breathing, but there were other alarming indicators that went beyond a boy trying to his catch his breath. Within hours he was intubated and flown to BCCH and thus began a long and difficult journey as we lived as a family for 15 months in the hospital.

Marie: The Lord started to support us through family and friends which I just realized as I was writing this that the name of Josiah was to apply to our family not just to him. Josiah was such a joy to us. We did not care how long the time would be we wanted to love him whole heartedly. He showed so much character during his frist few months. Josiah Endured 14 intubations fighting with nurses and respiratory therapists to cause some of them. This was only in the first 2 and an half months of his life. He had Eye exams, NG tubes, blood work every day, and a loud bright noisy room. He Chose to keep fighting and ne that God had more for him even at that young age. His eyes were full of life. He was finally Trached on April 30th and G-tubed a week later.

Andrew: One of the most lasting impressions of our time in the NICU was the fear of going to sleep. There were many nights we were woken with the news that Josiah almost died because he self-extubated. The NICU tested our faith and our family, and it established the foundation upon which the rest of our journey would continue.

Marie: Josiah soon started awful spells where he would not being able to breath. He would turn blue and black and we would just have to wait until he passed out. Then he was moved to the ICU so that they could take better care of him. It was a strange beginning of normal family life. We had our nurses and Doctors RT’s and bed mates. He became friends with children who came and went. His life was one that touched people who came in and went home with love and life. It was also one that gave hope to families who were just beginning there long journeys in hospital life. The accomplishments that he started to make were amazing and this also was a sign of Gods working miracles in Josiah’s life.

Andrew: Early in the NICU we were given the option of palliative care. On paper, Josiah had almost zero chance of survival let alone quality of life. If he was to make it beyond infancy, his best hope was to be a vegetable in a wheelchair. As parents, this was difficult to face but we decided that we do everything we could to give our son a chance and leave the rest up to God. Nevermind all the weird odds ‘n ends that challenged him, his brain alone was so highly underdeveloped that his doctor was shocked when he saw Josiah wiggle a finger. He wasn’t supposed to be able to do that, and he continued to amaze the staff in his own special way.

Marie: When Josiah passed his swallowing study it was so amazing. I was running and jumping down the hall to Dr Bob and he was a little scared. But I will never forget his response. How did they intubate him anyway? Josiahs Air way was so abnormal that Dr. Bob recognized that is was a miracle that they even could. Especially without leaving any scar tissue, which could have taken Josiahs life on its own. Wow a miracle.

Marie: Josiah survived severe seizures, aspiration pneumonia, and some of the worst blue spells they had ever seen. He was a fighter and God had so much purpose for his life. He had cronic ear infections and we would not know that he had one until we saw it, there were goobers in his ear or he had seizures because of the pain. He would just deal with it and his body would complain before he did. There was only one time that we needed to take extra action for extreme irritation. Wow!!! On top of that Josiah had two drug overdoses and God took care of him in both, when both should have been fatal.

Marie: When we decided that there was no more the hospital could do that we could not do at home we started making plans. The community had a hard time thinking that it was safe but we finally got the go ahead. We had 6 respite set up at the time and the nurses came later.
Marie: Being home was so fun, Josiah and I did everything together. He had a urge in his eyes that he wanted to enjoy life and so he did. Ya know? He has never woken up grumpy. He was always so excited to see you when he woke up. Even if it was 3 or 4 in the morning. He was just glad to be awake and with whoever was there. He had such a way of making each person know that he cared about them. I truly believe that he had a unique relationship with God and understood what it meant to love like Christ. That is what he would do with his eyes and his touch. This was his Job and he did it so well.

Marie: I was such a blessed mom, Josiah liked to cuddle and boy did we cuddle. He wanted to be independent and play by himself but he certainly wanted to be cuddled. Oh how Ioved it. With all the people that loved my son I had to let him go alot. It was hard as a mom to have to share my son so much. I really struggled at the beginning when I got home. I wanted him all to myself. Then I remember when I heard that I need to let Josiah go and do his job. He was not mine alone but Gods and he needed to be released to do what was planned for his life. He was unique in Gods design. He was a community child right from the beginning. The love that was given to him was astounding.

Andrew: Our home was a different home: medical bits like wrappers and instill ends littered the place; expensive equipment was found in every corner; our house beeped and whooshed and lit up just like an ICU hospital. But Josiah grew, excelled, and succeeded in our home. Playing with his go-to toys; laughing with his favourite stories; drinking his bottles and then taking the next step in eating baby food everyday; he got bigger and stronger, and he became confident with his body and learned how to balance, pull, and push. He understood sign language, recognized faces despite not seeing them for months, and loved it when family would talk to him on the phone.

Andrew: Josiah seizures got under controlled and he went down from 5 meds to 2. He was no longer dependant on diuretics to combat his water retention and went from needing 4 meds to needing none at all. He even got off his ventilator for the whole day, only needing it for his sleeps. It was ALL PROGRESS, sometimes fast sometimes slow but always forward and we were so blessed. He was the most content child I have ever seen, warm to everyone he met, never gave up on trying something he was determined to do, and always quick to forgive.

Marie: When Josiah and I would walk together we would always meet someone new at the park, zoo or mall. His being would just cause children and adults alike to walk up to us. We did not even have to look for them. He drew people to him without doing a thing. This allowed for his story and the proclamation of the glory of God to be shared through his life. He was a preacher left right and centre. It runs in the family ya know. We loved talking about our son. God told me in the NICU that Josiah was going to be a missionary in Africa and a day later the red spot on our blog map showed a spot in Africa that had found his story.

Marie: I was so proud of who he was. I prayed every night a thank you for who he was. He did not have to do anything, he just had to be free to do the will of God in his life and I needed to let that happen. That is what I hope we realize about our children is who they are is good. Not what they do or how they do things but for who they are. They are perfectly and wonderfully made no matter what problems they have or defects they have.I remember always saying to Josiah all the time. You are so cute, can I keep you forever.

I do not have him for a period of time and it hurts more than words can describe. This is the first time he has done something without me and I really hate it. But I know that God is good and I need to hold onto that. I do not want to be bitter and only God can prevent this in me.
When Josiah greets me in heaven I hope that he has all his outward beauties. His hump, big head, squished nose, short arms, rolls, moles, ears, jo haak and 6 toes. He was [erfectly and wonderfully made and God does not make mistakes. I believe that he will just not have limitations in heaven because what held him back on earth will be no longer. I look forward to our next big cuddle.

CLOSING - Andrew: The absence we feel today is as large as the impression he has made on hearts. And for that reason we ache and are heartbroken. Where there was once beeps of alarms and whooshes of breathing, there is only silence; where there was once a beautiful sleeping child on the screen of our monitor, there is now an empty bed. In a house that jingled and clanged with toys moving IB a mobile, there are only memories of a playful son; in a home where smiles filled every inch of his face and laughter wiggled through every part of his body, there is the sober reminder that our bodies fade and fail but our souls and legacy will live on.

Andrew: Every night when Josiah was in bed I would kiss him goodnight and say this same thing: Josiah I love you, Josiah I’m proud of you, Josiah I’m so glad you’re my son. A father has never been more proud of a son. He was perfect in every way for his limitations and challenges made him who he was. He was perfect because this is how God choose to make him. He was never a mistake, but a gift and a reminder that God is God: provider, healer, sustainer, and keeper of life. We love our son and miss him very very much.

=================================

Thanks for your continued prayers.
- Andrew & Marie

Readings - Lamentations

2009-08-18T11:38:00.001-07:00

I will never forget this awful time,
as I grieve over my loss.

Yet I still dare to hope
when I remember this:

The faithful love of the Lord never ends!
His mercies never cease.
Great is his faithfulness;
his mercies begin afresh each morning.

I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”

The Lord is good to those who depend on him,
to those who search for him.

~ Lamentations 3:20-25 (New Living Translation)

Josiah's Song - Lyrics

2009-08-11T08:22:00.000-07:00

Our friend Greg Harris wrote a song for Josiah over a year ago. For Josiah's memorial, Greg updated a few of the lyrics. This version of the song can be found below.

==========================================
JOSIAH'S SONG

Little boy , so sweet , so small and so strong
You taught us how to live, to love and hold on.
Little boy , you fought so hard and came so far
And you taught us what strength and courage really are.

Through the tears of joy and pain , You kept fighting
Through the fears and doubts and strains , You kept fighting
Now you’re home our beautiful son , Now you’re home our beautiful son, Because He has Saved
When we think of these past years, and all that you’ve done, we can almost hear you say…

Daddy when you held me in your arms, I was home
Mommy when you held me close, I was home
Daddy when I heard you laugh, it cut right through my fears
Mommy when I heard you cry, I tried to dry your tears
And I kept fighting, I kept fighting, But now there’s no more fighting
Because He has saved me

Little boy , there is so much of life , you didn’t see
But in the arms of Christ, now you’re free…

Next Steps

2009-08-09T13:01:00.000-07:00

Marie & I will be dropping below the radar for a few weeks as we continue to grief, reflect, and adjust. If there is silence on the blog for a while, I know you will all understand as we try to navigate our journey publically and privately.

Thanks for your on-going prayers, support, and love. I know many of you will be 'moving on' and returning to 'normal life' faster than you can believe and that's OK - you don't have to feel guilty about that.
- Andrew & Marie

Josiah Trees

2009-08-08T09:31:00.000-07:00

Marie & I will comment sometime later about Josiah's memorial service and the celebration that it was. There were a couple people who left without being able to purchase a tree because they were all sold out. Afterwards we found a few trees in the gym that were not sold. If there are people interested in still purchasing a small tree in memory of Josiah, go ahead and contact Arnold Community Church and they will arrange it.

- Andrew & Marie

Josiah's Memorial - Live Stream

2009-08-07T02:43:00.000-07:00

Yup, I'm up this late. Kinda wired because I was working on Josiah's Life Story.

We're going to streaming Josiah's Memorial online (thank God amazing church friends!) Check out the following site if you are unable to attend Friday evening:

http://josiahmemorial.homeip.net

UPDATE: Reminder, the memorial begins @ 6 PM 'BC Time' (pacific)

- Andrew & Marie

Josiah's Memorial - Recording etc.

2009-08-06T21:11:00.000-07:00

Hi Everyone

A few have wondered if Josiah's memorial will be available online/live. At this point, I don't think it's going to be available live, but we are aiming to put it online for a while so that friends and family who can't make the ceremony won't feel so left out.

Josiah - Obituary

2009-08-06T15:30:00.000-07:00

Hi Everyone

FYI, Josiah's obituary will be in 2 Abbostford papers and 2 Chilliwack papers this week (Thursday, Friday I think). For those who aren't local, I have posted the obituary below. Eventually Josiah's obituary will be in the Passport (Briercrest alumni publication) and the MB Herald (conference publication) as well.

Josiah Andrew Haak
Febuary 16, 2007 - August 2, 2009

It is with broken hearts that we announce that our son Josiah has gone to be with Jesus. From the day he was born Josiah has been “supported by God” (the meaning of his name) and faced every challenge with courage and strength. Despite his limitations, his smile, touch, and eyes that looked right at you shared more than any words could say. Through his father’s blog, people from around the world were able to follow his life in a unique and powerful way (andyman-sdg.blogspot.com).

Josiah is survived by his dad and mom, Andrew and Marie Haak of Abbotsford, and is mourned by a community of friends and family. He was greeted in heaven by two friends who have gone on before him and his great grandparents.

A memorial service celebrating Josiah’s life will be held on Friday August 7th at 6:00 PM at Ross Road Community Church (3160 Ross Road, Abbotsford, BC). In lieu of flowers and gifts, small potted trees may be purchased at the service with all proceeds going to BC Children’s Hospital.

Josiah's Memorial - Directions Etc.

2009-08-05T23:09:00.000-07:00

UPDATE: The Abbotsford International Airshow is on this weekend, and so traffic thru town and especially on the Fraser Hwy (leading to Ross Road Community Church) will be full. Please plan accordingly.

Hello Everyone

We just want to confirm that the times and locations for Josiah's Memorial and Viewing are correct.

Friday August 7th, 2009
9:30-11:30 AM --> Viewing @ Henderson's Fraser Valley Funeral Services
(34537 Marshall Road, Abbotsford, BC)

6:00 - 7:00 PM --> Memorial @ Ross Road Community Church
(3160 Ross Road, Abbotsford, BC)

7:00 PM onward --> Reception @ Ross Road Community Church
Refreshments, memories and open-mic sharing.

Maps for directions are below.

Henderson's Fraser Valley Funeral Services

View Larger Map

Ross Road Community Church

View Larger Map

- Andrew & Marie

Josiah Haak - Pictures

2009-08-05T01:38:00.000-07:00

(July 12th, '09 ... taking a roadtrip break near Salmon Arm, BC)

(July 13th, '09 ... on our way to Calgary!)

(July 14th, '09 ... meeting his great-grandmother for the first time)

(July 13th, '09 ... our last family photo I think ...)

(July 21st, '09 ... playing with Daddy and proving he is strong and has the best smiles ever)

Giving in Memory of Josiah

2009-08-04T23:13:00.000-07:00

Thank you all for the many ways you have been expressing your sorrow and kindness to us. The decisions to be made and the details that are required have been snowballing as reality sets in and we're hoping that we are getting the right information into your hands as it is needed.

Marie and I have decided that we'd really like to give back to BC Children's Hospital for all that they have given our family. In lieu of flowers and other gifts, please consider these options:

1) BCCH has a "In Memory Of" online donation service which can be accessed here.

2) With the assistance of BCCH, a "Josiah Haak Wall of Tribute" has been created on the BCCH website. While you can there with a little clicking, the direction link is here.

3) Finally, one that Marie & I are very excited about: instead of flowers and alike at his memorial service, we're going to fill the stage with the things that gave Josiah the biggest joy - trees. We are inviting anyone who is interested to purchase a small potted tree that will be available at his memorial as a reminder Josiah's life and how much trees filled him with such joy. All the proceeds of these sales will go to BCCH.

Hopefully this information can answer the questions you may have and give you some direction.

Thank you for the many forms your generousity, devotion, and tenderness has been seen this week.
- Andrew & Marie

Josiah's Memorial Info

2009-08-04T18:41:00.000-07:00

Hello Everyone

This one will be brief. I know many of you are waiting for news so that travel plans can be made. Please pray that we will not run into any complications as we prepare to celebrate and remember the life of our Josiah: there is a slight concern that the autopsy may delay things, and that it might be difficult to find a casket that works for Josiah on short notice.

Friday August 7th, 2009
9:30-11:30 AM -- Viewing @ Henderson's Funeral Services (Abbotsford)
Noon -- private graveside service
6:00 PM -- Memorial Service @ Ross Road Community Church (Abbotsford) Reception to follow.

... address and directions will be posted soon.

Thank you for your prayers.
- Andrew & Marie

Thank You

2009-08-04T03:30:00.000-07:00

Marie & I couldn't sleep and read through all the facebook, blog, and email comments. thank you everyone for your kind words and prayers.

Josiah Andrew Haak: Feb 16 '07 - Aug 2 '09

2009-08-03T11:59:00.000-07:00

Hello Everyone

I realize that there will be many of you who have been following Josiah's story since the beginning who are aching to hear what happened in the last 24 hours that so quickly brought our precious Josiah into Jesus' presence.

It doesn't make it any easier, but we can see many signs along the way of how God ordained this day to be. Josiah had just completed his first big road trip: he visited Grandpa & Grandma's farm in Enderby, he got to walk through Gardom Lake Bible Camp with us, and he was able to visit with family - especially his great-grandmother - in Calgary. Josiah passed in peace, and was assisted by a Christian firmen who we knew and a Christian police officer who took our phone book and made calls on our behalf. Josiah's body was sustained until the afternoon so that I and others were able to say our good-byes, though it quite possible that he was already in heaven and his body was just on auto-response.

Josiah had a wonderful day on Saturday. He went for a walk through his favourite parts of Mill Lake, went shopping and bought gifts for some of his friends, and attended his buddy Sammy's birthday party, where he played and played and played.

There was no indication that anything was wrong. Josiah was fully cleared up from his ear infection that he had 2 weeks earlier. He was sneezing a lot from his allergies, but was incredibly happy, content, and playful.

Marie was woken by our nurse around 12:30 AM. Josiah was in a typical seizure and then nothing. No stress, no coughing, no slowing down of the heart, just nothing. In second Josiah was gone in complete peace. The nurse was so confused, and Marie and him just thought the sat-probe was off because there was no indication that Josiah went through any trauma. But he was white and gone.

You can imagine what happened: confusion, screaming, alike. I was in Grand Forks with our youth camping trip and so it was Marie and the nurse. Marie did CPR and pounded his chest until the paramedics arrived. A fireman from our church was first on the scene. A police officer called family and church members, and arranged for Grand Forks RCMP to come to our camping site and inform me of the situation. I left Grand Forks at 3 AM and was able to be with Marie & Josiah at BCCH by 10 AM.

The firemen and paramedics first tried CPR, then the paddles which didn't work. They gave him a short of epinephiryn (sp?) - heart juice - and continued with the paddles which this time re-started his heart. But Josiah had been without a pulse and not breathing for at least 10 minutes.

Josiah was taken to Abbotsford Regional Hospital and then flown to BCCH. When he reached BCCH, his temperature was out of control, a sign that his brain was unable to function properly. His body temperature reached 42 C - hot enough to damage his brain - a so they cooled his body with a ice blanket to help him out.

By noon he had stabilized, heart rate around 150 bpm and his temperature was down. And though he was off his sedatives, he didn't indicate that he was with us. Though he was breathing on his own and would wiggle his thumb, smack his lips, and flicker his eyes a bit, the absence of any coughing to clear his lungs and his soaring temperature were enough of a sign to realize that he was gone.

We opted to treat him as would at home: Tylenol, oxygen, etc and see what would happen. It is difficult because the ventilator complicates the whole dying process. It was obvious within a few hours that he was getting worse: his temperature came back, his heartrate became irregular and sky-rocketed and his breathing became very stressed and ineffective.

Josiah passed around 5:30 PM on August 2nd, 2009. He was surrounded by his parents, Marie & Andrew, his grandparents, Don & Bev Haak, and our pastor Rob & Leanne Dyck. We sang with wavering voices, we cried, and Marie & I held Josiah close as he went. It was difficult - the worst day of my life - but we believe that despite what his body was going through that Josiah was in peace, felt no pain, and was perhaps already in heaven though his body was with us.

We were blessed to have many of our family and friends join us as Josiah was entering heaven. Many were able to say their good-byes and hold him one last time. We are blessed to be loved so deeply, death is always best as a community.

We know Josiah is best off in heaven and for that reason we don't want him back. But we miss him so much. He was in God's hands from the very beginning, and he is there now in God's presence free of all the challenges and obstacles that he faced on a daily basis here.

As you all know, Josiah was unique in more than just his physical challenges. He had a presence, a spirit that transcended all of his limitations so that he touched more lives than any toddler could. Strangers on the street, families on all continents, and friends and family who interacted with him regularly, we all experienced God's blessing through the love Josiah gave everyone. His smile, his touch, his eyes that looked right at you shared more than any words could say.

Memorial arrangements will hopefully be communicated within the next day. We ask for prayer, not only for us and the many families who are grieving, but also for the planning that needs to take place through the next week. Obviously we want the whole process to be as easy and trouble-free as possible.

There are no words to express the heartbreak that Marie & I will live with for the rest of our days. And we understand that many of you will also walk with that same heartbreak. And in the same way, there are no words to express our sorrow for all of you who are grieving alongside of us.

For all those who have cheered, wailed, prayed, and supported Josiah, Marie & I through the last two and a half years, we are grateful beyond comprehension. Josiah lived and beat the odds because of the prayers of you were heard by our powerful God. Josiah was "supported by the Lord" (as his name means), and he continues to in that reality now by Jesus' side.

There is much still to say, and maybe there will be time for Marie and I to share more of our heart. We'll see what the next days and weeks will bring. For the moment we live just to make the next decision.

We are broken. Yet in the grace, strength, and mercy of our God and Saviour, and the presence of Spirit and people, we are forever blessed.
- Andrew, Marie, and - our precious gift from God - Josiah

Josiah Emergency - 6:15 PM August 2nd

2009-08-02T18:18:00.000-07:00

Josiah has gone to heaven to be with Jesus.

Josiah Emergency - 4:30 PM August 2nd

2009-08-02T16:34:00.000-07:00

Josiah is fading and will be in heaven soon. If anyone needs to come & say good-bye to him they are welcome to join us @ BCCH (ICU) and say good-bye. Thank for you the prayers, the love, the tears.

- Andrew, Marie & Josiah

Josiah Emergency - 2:30 PM August 2nd

2009-08-02T14:31:00.000-07:00

Hi Everyone

Josiah's temperature is slowly coming down (40 C to 38.8 C), but still a fever. thanks for the prayers. his lungs are very wet and we're unable to clear then - please pray that Josiah's lungs will clean up, and that his work of breathing + heartrate will lower .. not much responsiveness over the last bit ...

Josiah Update - 1:00 PM August 2nd

2009-08-02T13:03:00.000-07:00

Hi All

I'll copy 'n paste my Facebook posts here (yeah, I still refuse to Twitter-fy).

--------------

Josiah has been wiggling his thumb, moving his lips, and flicking his eyes but it is nothing definitive... could mean something, could mean nothing (he may be coming around or his brain may just be auto-responding) ... his vent settings are better (meaning he is breathing better on his own) ... you can pray that his temperature will go down ...thanks for all your prayers ...

Josiah Emergency - Sunday August 2nd

2009-08-02T11:17:00.000-07:00

Hi Everyone

This is the hardest thing a father must write:

Last night, Josiah had an unknown medical emergency that took him into cardiac arrest. He was not breathing nor had a pulse for 10 minutes before paramedics were able to resusitate him with CPR, paddles, and meds.

Josiah is now at BCCH and is unresponsive. Over the next hour or so we are going to watch his vitals to see how he responds coming off the sedatives. It is most likely that his mind and body were damaged beyond repair during his episode.

Marie need God's wisdom, strength, and love as we care and make decisions for our precious Josiah today. Please pray that the doctors will give us sound counsel and take good care our boy. Please pray that God would reveal his plan for Josiah: that Josiah will be responsive and demonstrate mental capacities, or that God is waiting for Josiah to join him heaven.

This the hardest day of being a parent, a human being. And it may be followed by more harder days.

We follow a good God who is loving, powerful, and sees the world in a way we can't. We have the hope of heaven, the promise of reunion with Jesus and all those who loved him. Marie and I don't want to say good-bye to Josiah, to live our lives with his echos and memories, but we will follow our God.

Thank you for your prayers.
- Andrew, Marie & Josiah

A Josiah Update - Thursday Evening July 9th

2009-07-09T20:54:00.000-07:00

Hi Everyone

Josiah was discharged today from BC Children's. He will be continuing some antibiotics at home, and we are hoping that it won't interfer with our holiday plans. Thankfully, Marie & Josiah's stay in the hospital was a happy one: lots of visiting with friends!

Josiah's bloodwork came back fine, now we're just waiting for chest infection to fully clean up.

As you pray for his health, could also pray for his skeletal structure: we're trying to figure out what to do next with posturing and developing etc, and have some concerns for might happen if his spine continues to worsen.

Thanks for the prayers.
- Andrew, Marie & Josiah

A Josiah Update - Noon Wednesday July 8

2009-07-08T11:36:00.001-07:00

Hi Everyone

A quick update: Josiah

A Josiah Update - Noon Wednesday July 8

2009-07-08T11:36:00.000-07:00

Hi Everyone

A quick update: Josiah's lab results will come in this afternoon. If they are positive, Josiah may have to stay in the hospital until Tuesday. Of course this would put a serious dent into holiday plans for July.

Josiah's on a constant IV, which means he can't leave the room and Marie doesn't leave often. Other than the boredom that comes from being stuck in a room for days, Josiah is doing fine. He's even taken to the new trache alright.

Please pray for a speedy recovery, that these antibiotics will completely remove the illness, that we'll find the rest we need this week and still be able to make our holidays happen.

Thanks.
- Andrew, Marie & Josiah

A Josiah Update - Evening Tuesday July 7th

2009-07-07T19:00:00.000-07:00

Hi Everyone

Just to pass along, Josiah is going to be hanging out at BC Children's for a couple of days. Last week he had started antibiotics for a chest infection and it appears that the antibiotics weren't strong enough and the infection has passed into his bloodstream. So he's going to be taking antibiotics via IV for a while.

Thankfully, Josiah's been a pretty good mood about it all. There were a few days when he couldn't get off his ventilator because had so many secretions, but he's been doing very well the last couple of days. We are also trialling a new trache: it doesn't have as long of an extension so it should make it easier for him to breathe when he's not on his ventilator.

If you could please pray that Josiah would get better soon that would be very appreciated!

Thanks everyone.
- Andrew, Marie & Josiah

A Josiah Update - Thursday June 18th

2009-06-18T14:47:00.000-07:00

Hi Everyone

Just a short note that you can pray about. Josiah's had an ear infection again for about a week now. We've been extrememly fortunate that we've been able to keep the pain to a minimum by cleaning it 4x a day (which he isn't so excited about it!). The swab test took longer than usual process because - well, to be blunt! - there's a lot of bad stuff in his ear right now.

Josiah's current ear infection is a combination of staph infection, MRSA (that's "staph on steriods" a strain of the bug that is super-resistant), and strains of the pneumomia and strep throat viruses. Thankfully he doesn't have symptoms of pneumonia and strep throat, but it is a concern that these bugs are taking up residency in his ear right now.

We received our antibiotics today (they don't look very nice: "may cause burning sensation, must keep on his side for 5 minutes" - yeah right!), and so we're praying that this will clear up all the bugs that are creating this infection. We need this medicine to work because Josiah is allergic to the preferred medicine for these infections. Please pray also that we'd be able to get on the same page as his ear doctor. We would really like to see his ear tube removed since (in our opinion) it is causing more harm than good, but the doctor is insistent that the tube must stay.

Thanks for everything you do for our family!
- Andrew, Marie & Josiah

A Josiah Update - Friday Afternoon June 5th

2009-06-05T16:53:00.000-07:00

Hi Everyone

Just a quick note that our BC Children's Hospital Miracle Weekend interview will be on Global TV on Saturday June 6th @ 9:44 PM.

Another quick blurb: Josiah is CHOWING through his food, now sometimes turning down the bottle because he wants 'big boy food' - very cool! So far in the last couple of weeks he's had pears, apple-plum, apples, and butternut squash!

Have a fantastic weekend!
- Andrew, Marie & Josiah

A Josiah Update - Morning Monday June 1st

2009-06-01T11:19:00.000-07:00

Hi Everyone

Just a few things to post and highlight here in 'Josiah-Land'. To start things, 2 weekends ago we returned to Aquadel Golf Course (Cultus) to do a short interview for the BC Children's Telethon that is coming up next weekend (June 6-7). Global and BCCH were interested in doing a follow up story with Josiah since he's been home for just over a year now. We didn't know this, but they even used Josiah's bio for the main story that weekend (I've uploaded a scan of the pamphlet below - click the image to expand and read). We don't know yet when Josiah little promo will be shown during the telethon, but when we know we'll post the info here.

In other news, Josiah got a new chair last week. The new chair is great in a couple of ways: first, it's an actual chair and not a 'lazyboy' like his previous chair was. It keeps him in proper sitting position (90 degrees) and he is absolutely loving the freedom that comes with it. Second, the chair can detach from its base and can be attached to a regular kitchen chair - this is huge because we can take it with us and have him join us at the table for meals.

Josiah is also taking baby food in large quantities - yay!! We've been able to pick up a few new techniques from his occupational therapist, and Josiah is thoroughly enjoying the new sensations. For the week he was only take food off our finger (maybe he didn't like the hardness of a baby spoon?) but last night he confidently took food off a spoon for the first time - woohoo!

Lastly, Josiah was having a lot of fun in his bathtub last night. For the first time, Josiah was splashing with his hands in the water! While he has always enjoyed his baths, Josiah has always resisted playing with his hands in the water, but his willingness to explore and play last night speaks volumes of his confidence.

And for your viewing pleasure, I've uploaded a short video of Josiah eating some apple-plum baby food yesterday!

Josiah Eating Baby Food (May 31 09)

Have a great day everyone - thanks for all your prayers and cheers!
- Andrew, Marie & Josiah

A Josiah Update - Tuesday Morning May 19th

2009-05-19T07:48:00.000-07:00

Good morning world.

It's been almost a month since we last posted, but there isn't much tell in the way of Josiah News. At the beginning of the month we had our first "family vacation" by heading out to Harrison Hot Springs for our church conference's Pastor & Spouse Retreat. We didn't get much sleep (hard to pack a nurse along!) and Josiah was dealing with an ear infection (needed a lot of hands-on time since the noise bothered him), but it was such a great accomplishment to say that we actually did it! :D

Josiah has come completely off Dilantin (seizure med) and is maintaining his seizures well. He's also needing much less diuretics, which is very encouraging. He also spends most of the day off the ventilator, 10+ hours on his 'nose' - such a blessing!

Last week Josiah had an ECG and echo exam for his heart. Everything appears to be functioning well, despite his anomolies. The remaining 'hole' he had in his heart has closed up on its open, which is a big answer to prayer. There are still a couple of oddities (such as a VERY large artery, a small tissue 'flap' that is forming) that the cardiologists would like to keep their eyes on, and so he'll had annual heart check ups from now on.

Josiah continues to deal with ear infections, and this last one has been a doozy. In addition to his ear woes, he seems to also be fighting a bug or something: diarrhea for a couple of days and now this morning very wet lungs. You can pray that he gets healthy and doesn't require a hospital visit/stay.

Prayer Requests:
~ (Permanent!!) Healing from ear infections + wisdom as we work with his doctors about this
~ On-going development: motor skills, communication, and positioning
~ General health, well-being and comfort
~ Energy + wisdom for Marie & I

Thanks for all you do for our family! :)
- Andrew, Marie & Josiah

A Josiah Update - Late Sunday April 26th

2009-04-26T23:59:00.000-07:00

Hello Everyone

We have no nurse tonight so I'm taking the opportunity to fill in a blog post. I can't believe it's been over a month - my goodness, my biggest apologies! OK, too be honest it's really hard to remember all the newsworthy bits of the last five weeks, but I'll do what I can.

Probably the easiest for me to start with most recent news. Josiah had a quick trip to Emergency this morning because he had 6-7 absentee seizures in a 3-hour period. Needless to say, we let him skip church ;) Thankfully he has no respiratory issues, just an ear infection unless the bloodwork shows something else. He was home by lunch and has had a great rest of the day.

On a seizure note, we're extremely excited to see Josiah's Dilantin medicine being successfully weaned (his Lamotrogine medicine is being increased simultaneously). In a just a few more weeks he'll be completely off Dilatin and hopefully that will ease his teething pains (Dilantin toughens the gums).

Josiah has been going for very long stints without the ventilator. There have even been a couple of days where he really only had his ventilator for naps and sleeps. Very awesome! I can't tell you how great it is to move him around 'wireless' ... not too mention it eliminates a bunch of white noise in the house!

Josiah was able to have his sight and hearing examined this past month. Josiah may need hearing aids in the future, but the good thing is that at the moment it is only fluid which is his obstructing his hearing. We also found out he is near-sighted, and will probably need glasses down the road. His eyes also have the tendancy to 'shift' and he does have one eye that can be a little lazy, but the muscles appear to be well which is a good sign.

After having Josiah's trial walker for a week, we determined that his pelvis probably isn't ready yet to support the weight of his upper body (the walker had a bicycle seat between his legs that he would rest on). So we'll be seeing if a differet kind of walker will work for him. Thankfully, his ingrown toe nails (yeah, both of his extra big toes were ingrown - the ankle brace straps that went across his toes caused the nail to dig in!) have improved so we might be able to return to using his braces.

Here are some specific things that we have been praying about:
~ That Josiah will be able to walk (crawl, roll over, etc)
~ That Josiah will be able to learn how to communicate with his mouth, hands, and eyes and that we'll be able to understand it
~ That Josiah will stop having ear infections

.... and, one little last thing - a treat for sticking around to the end of this lengthy post!

Josiah went to the zoo last Thursday and he got to meet a local sports hero who was taking a holiday with his kids. The only thing is, you have to guess who (which!) he had his picture taken with!!

OK, you have a 50-50 chance: Josiah got to be held by Daniel Sedin! It was completely coincidental that he was wearing his Canucks toque and shirt!

Thanks for all your prayers, cheers, and support.
- Andrew, Marie & Josiah

A Josiah Update - Late Evening April 26th

2009-04-26T23:31:00.000-07:00

Hello Everyone

We have no nurse tonight so I'm taking the opportunity to fill in a blog post. I can't believe it's been over a month - my goodness, my biggest apologies! OK, too be honest it's really hard to remember all the newsworthy bits of the last five weeks, but I'll do what I can.

Probably the easiest for me to start with most recent news. Josiah had a quick trip to Emergency this morning because he had 6-7 absentee seizures in a 3-hour period. Needless to say, we let him skip church ;) Thankfully he has no respiratory issues, just an ear infection unless the bloodwork shows something else.

On a seizure note, we're extremely excited to see Josiah's Dilantin medicine being successfully weaned (his Lamotrogine medicine is being increased simultaneously). In a just a few more weeks he'll be completely off Dilatin and hopefully that will ease his teething pains (Dilantin toughens the gums).

Josiah has been going for very long stints without the ventilator. There have even been a couple of days where he really only had his ventilator for naps and sleeps. Very awesome! I can't tell you how great it is to move him around 'wireless' ... not too mention it eliminates a bunch of white noise in the house!

Josiah was able to have his sight and hearing examined this past month. Josiah may need hearing aids in the future, but the good thing is that at the moment it is only fluid which is his obstructing his hearing. We also found out he is near-sighted, and will probably need glasses down the road. His eyes also have the tendancy to 'shift' and he does have one eye that can be a little lazy, but the muscles appear to be well which is a good sign.

After having Josiah's trial walker for a week, we determined that his pelvis probably isn't ready yet to support the weight of his upper body (the walker had a bicycle seat between his legs that he would rest on). So we'll be seeing if a differet kind of walker will work for him. Thankfully, his ingrown toe nails (yeah, both of his extra big toes were ingrown - the ankle brace straps that went across his toes caused the nail to dig in!) have improved so we might be able to return to using his braces.

Here are some specific things that we have been praying about:
~ That Josiah will be able to walk (crawl, roll over, etc)
~ That Josiah will be able to learn how to communicate with his mouth, hands, and eyes and that we'll be able to understand it
~ That Josiah will stop having ear infections

.... and, one little last thing - a treat for sticking around to the end of this lengthy post!

Josiah went to the zoo on Thursday and he got to meet a local sports hero who was taking a holiday with his kids. The only thing is, you have to guess who (which!) he had his picture taken with!!

OK, you have a 50-50 chance: Josiah got to be held by Daniel Sedin!

A Josiah Update - Late Tuesday Night March 17th

2009-03-17T22:46:00.000-07:00

Hi Everyone

Just a short one (more of an excuse to post a BEAUTIFUL picture of our boy than anything!)

There is one note-worthy progress to pass along: Josiah is starting trials OFF his ventilator! Woohoo! We're very very happy with his ability to handle up to 2 hours continuous off his ventilator. It certainly gives us and him more mobility (plus it cuts down on the noise in our home!) Most of the day he will remain on his vent, but we'll give him 2-3 times throughout the day to go 'wireless'. It's a wonderful, wonderful feeling.

Also, Josiah demonstrated for the first time today his ability to use his hands to push himself back into a sitting position. Usually he uses our fingers as a support to pull and push himself back and forth, but now he's figured out how to do it without our assistance! Yay!

Anyways, here's a picture taken of Josiah last week. Enjoy!

Grace & Peace
- Andrew, Marie & Josiah

Josiah Update - Saturday Afternoon March 7th

2009-03-07T14:15:00.000-08:00

Hello All

Sorry, it's been a while since we've put some info up here. Josiah seems to have settled out from his toxic experience/hospital stay. The antibiotics appear to have cleared up his ear infection (yay!! thanks God!) and he's managing his secretions well. It feels like he has had a few more seizures than normal (the usual sleep-time tremors) and so we're going to have his medicine levels checked again to make sure they are not too low.

On the developmental side of things, Josiah is demonstrating better posture and body control - moving away from his floppy self which is so great to see! He's using both hands more, pushing and gaining arm strength, and he's chowing down on his bottles like never before. That's been a very exciting change, since we've been able to eliminate his 4:30AM and give him more to drink while he's awake through the day. That his body can handle it is a big testament to the fact his water retention issue is slowly being overcome. We're also grateful because his form-fitted chair was refited so that he's much more comfortable in it. Further, he's going to be upgrading to a new style of chair which can be attached to any regular chair! Woohoo! That will certainly make visiting and travelling easier.

Marie and I were talking this morning about how glad we able that Josiah shows that he can remember. It's something we can't take for granted since many special needs children need repetition before something is remembered. An example we talked about is one day when we held Josiah's hands in his chair and pulled him across the kitchen floor. He loved it, and the very next day when we held his hands again in that same chair he anticipated it (and started bracing for it!) before we even started pulling! God is good.

That'll do for now. Thanks for the prayer, love, and support.
- Andrew, Marie & Josiah

Josiah Update - Morning Thursday February 26th

2009-02-26T09:03:00.000-08:00

Hi Everyone

What a treat - frequent updates!

Josiah's secretions have muchly improved - thanks for the prayers. He still has his goobers, but he's handling them much better, sat-ing better, and they're not as yellow-ish.

Unfortunately, he's had 4 absentee seizures this morning in a period of 90+ minutes. (FYI, an absentee seizure is 'when the lights are on but no one is home' - awake, but not engaging, breathing not enough, etc). The last time he had this many in such a short period was when his dilantin levels were too low. We gave him lorazepam (seizure/knock-out med) and we're waiting for our family doctor to send us a bloodwork requisition so that Josiah's levels can be tested against yesterday's results (his dilantin levels were good yesterday, so it's strange that things are so off today).

So thanks for your prayers. We cling to them.
- Andrew, Marie & Josiah

Josiah Update - Late Night Tuesday February 24th

2009-02-24T23:12:00.000-08:00

Hi Everyone

Just giving an update of Josiah since coming home. Josiah's definitely been doing mostly good since coming home, his ear especially has improved so much and we are really grateful. He's been having moments of pure bliss - we haven't seen him this happy in weeks!

Josiah's chest infection, unfortunately, hasn't appeared to have improved at all. His loogies are still terribly thick, frequent, and yellow-green ... not pleasant at all and they are really scaring him! We are going to continue with antibiotics for another week, but if there isn't any noticeable improvement in the next couple of days he may go hang out at the ICU for observation. There's a particular nasty virus going around and they want to make sure that he moves through it fine.

So if you could pray for his health and improvement we'd really appreciate it. Josiah is also getting bloodwork tomorrow morning for his dilantin levels (seizure med) to make sure they are maintaining well with his new tablets.

Thanks for blessing our family with your prayers - it's a great gift that we don't forget.
- Andrew, Marie & Josiah

Josiah Update - Saturday Morning February 21st

2009-02-21T07:15:00.000-08:00

Good morning :)

Josiah was discharged last night around 7 PM and we got home some time after 9. He was pretty dozy, but obviously happy to be home ... too happy in fact: he picked up a second wind of energy and played until midnight (thankfully, we had a nurse so we slept while he partied!)

Josiah will continue with antibiotics and ear drops for a few more days. The doctors are pretty convinced that the bizarre behavior he demonstrated was a toxic response to super-high dilantin levels. To give you a sense of how high the levels were, Josiah finally dropped into the very high-end of the normal range last night, 79, but was at 148! Wednesday night.

Josiah's infection is clearing up (white blood cell count has dropped), and he is much more temperate except he is very sensivitve with his fingers (LOTS of blood test pricks) and IV arm. But, we are so grateful that his IV stayed in for almost two days! During his last hospital stay, he had 3 IV's in less than a day because they kept coming out.

Thanks for all the prayers and checking in. It appears it's "life back to normal" for us ;)

Grace & Peace.
- Andrew, Marie & Josiah

Josiah Update - Noon Friday February 20th

2009-02-20T12:06:00.000-08:00

It looks like Josiah will be coming home tonight! Josiah is set to go after his last IV antibiotic tonight, and we're excited that this hospital stay has been so short. He's in much better spirits today (was able to have a bath, trache ties, and handled crying hard without getting 'dusky'). His dilantin levels (seizure med) are still high, but they believe they should be back within normal range tonight. His trache aspirate (that's loogie or booger for the uninformed!) shows he does have an infection, but nothing to be alarmed about. I imagine he'll continue with oral (g-tube) antibiotics for his ear infection for a while to make sure that it's completely cleared up.

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Evening Thursday February 19th

2009-02-19T19:53:00.000-08:00

Hi Again

Josiah is doing well. Slept a lot this afternoon, mostly out of boredom I think ;) Marie was able to get a lot of sleep too ... so I got to watch the hockey game! Yay!

Josiah is taking IV antibiotics for his ear infection. His dilantin (seizure med) levels were astronomically high, so that might be the cause of his bizarre behavior last night, but they are not certain what exactly happens when dilatin levels become toxic. We've used liquid dilantin since May '08, but something about this last dose ... the suspension didn't hold together well enough and got too concentrated at the bottom we suppose. His levels are going to be monitored so that they drop down to a normal range.

This will probably be the last update for the day. We'd like to see Josiah head home tomorrow, but that all depends on his antibiotics and if they need to be continued via IV or if he can switch to oral. All in all, Marie and I have enjoyed our 'family time' :)

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Noon Thursday February 19th

2009-02-19T12:06:00.000-08:00

Hi Everyone

Here's a blur-through of what's been happening this morning. Josiah and Marie arrived at BC Children's around 5 AM and he's been really comfortable. He's awake, playing, not ecstatic but content, and his vitals are good. Marie's pretty exhausted (less than an hour's sleep) and so I'm leaving soon to spend the rest of the day out there.

Right now priority number one is to treat his ear infection with antibiotics. His lungs and respiratory system look great so the problem isn't there. Neurology is supposed to stop by today and help give their thoughts. With the typical caution that you want to have associated with the ICU, Josiah probably won't be coming home until Monday since they will want to observe him for a while, watch for improvement, and try to determine what this odd behavior was and what triggered it.

If people are interested in dropping by to say hello, please call either my cell number or the ICU first to see if we're awake enough to socialize. Thanks!

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Laaaaate Wednesday Night

2009-02-19T01:06:00.000-08:00

Hi Everyone

Josiah had a return trip to the Abbotsford hospital tonight. After coming home this afternoon and sleeping wonderfully for almost six hours, he woke up and was happy but around 9:00 PM he began some very alarming panicky/completely-out-of-it/hyperventilating behavior that he couldn't control and we couldn't stop. It didn't appear to be respiratory related nor did it appear to be pain (he wasn't crying per se, just freaking out) and he wasn't interactive and nothing could comfort him. We attempted to sedate him, but that didn't work either.

The paramedics were called (LOTS showed up!) which put an interesting cap to our Young Adults night, and Josiah was taken to emergency. After at least an hour of this behavior it stopped and Josiah was able to focus, respond to us, be calm, and 'talk' before he decided that it would be most excellent to sleep.

So he's receiving antibiotics and Marie's with him at the hospital. Whenever it is possible he will be transferred to BC Children's where they will try to sort out what happened (bizarre seizure? ear infection gone bad? weird respiratory distress?) We're praying for fast healing and appropriate action along the way ... and we're grateful that our God continues to sustain and provide for our little guy. We're also praying that his chronic ear infection will be dealt with once and for all.

Thanks for your prayers, concerns, and well wishes. Please continue to prayer for our energy, wisdom for all, comfort and healing for Josiah, and safety. I'll be posting updates as I can throughout the next couple of days.

Grace & Peace.
- Andrew, Marie & Josiah

Wednesday February 18 - Josiah Update

2009-02-18T16:01:00.000-08:00

Just a 'FYI', Josiah had a short stay in the ARH emergency today as his secretions were getting worse. He started showing signs of a cold back on Friday, and the loogies were just getting thicker and more frequent each day. This morning it felt like we couldn't keep up with the goobers he was coughing, and let's just say they were a brilliant green tone! At one point we had to give him oxygen and increase his pressures because he was having a hard time catching his breath. Anyways, we had a great experience at the hospital (except for the parking price - yikes!), and we got back home within 6 hours.

Josiah went through the works (x-ray, swabs, blood and urine samples, and trach aspirate) and while his lungs are a little wetter than normal it appears the biggest issue he's fighting is an MRSA infection in his ear (probably co-related). We weren't surprised: he's had a chronic ear infection since September and we're hoping that this is now ample reason to remove the tube in his ear. We have been given some new (stronger) antibiotics to use, and we're hoping and praying that these will clear up his problems.

Thanks for your continued prayers and support. Josiah (and Marie!) are both comfortably sleeping at home ... and I'm off to pick up stuff in town and get ready for Young Adults!

Grace & Peace.
- Andrew, Marie & Josiah

It has been almost 2 years!

2009-02-06T09:51:00.000-08:00

The Haak Family Review of the Years?This is a picture drawn by one of our youth named Colton F.

This was my belly on Feb 5th 2007, 11 days before Josiah came. Only 7 months and 2 weeks! uncomfortable...

One of the Haak family pictures taken in November 2008

Oh... it is fun and messy. We finally found him a great smock

Josiah with Mr. Crinkle paper just before we had to replace it with a new one. He was just drawing so that is why the color on the face. He always ends up with the felts on his face.

So have you forgotten that we were young to! Andrew looking great. Any resemblance to Josiah?

This would be me, yes... Marie. 'Aint the dress great!

We have had a great many days. Josiah is down on his pressures to 6 and 12. This means that we are one step away from being able to try him off the vent for parts of the day! Wa hooo!! Freedom! I took Jo to the park on Tuesday and he really enjoyed it. He is so strong compared to the lat time he was in the swing. He was working on sitting up straight in the swing and kicking his legs as he was being pushed back and forth. He laughed down the slide and could not get enough.

He seems to not be able to get over the chronic ear infections. I do not know what is going on. You can really pray for that. It is really bothering him lately and he has had many pain cry's in the past two days. As us moms know, we want to cry to when we see that.

He has been working on an ab ball lately and the stability he is getting is incredible. He has been pushing through is arms and balancing at the same time. He has been pushing with is feet leaning on the ball and working toward a full standing position on on his own initiation. I admire him because he never gives up. He was working on turning an object on one of his toys and would not give up. He did not accomplish it yet, but with that attitude he will some day.

He has also taught me something again this week. When Jesus says that we are to have faith like a child there is more to it than we realize. Kids are so quick to forget and move on. They do not dwell on the past but enjoy the present. They forgive instantaneously and say sorry when told to. Basic important things in life that us adults dwell on to much and complicate. Josiah does this every day. I squish water up his nose to clean it out, he cries or fusses but then smiles and gives hugs when done. I accidentally pinch his skin during trach ties and he cries and is upset but again when it is over he smiles and gives hugs. Challenge from Josiah and all other kids. Do you have faith like a child?

I am grateful for all your love and time that you spend with us on this blog. I also want to say thanks publicly to all my respite care givers who helped out tremendously when I was sick for so long. Thank you from the bottom of my heart. Thank you also to all who continue to pray for us and bless us in this way. Thank you to all who visit me and spend time in my home to encourage and lift me up. May God in return bless you all in unique and special ways.

Love to all of you Marie Andrew and Josiah.

A Josiah Update - January 31

2009-01-31T07:35:00.000-08:00

Good Morning all

Just a short note to say, yup Josiah's sick. He started antibiotics about two days ago because his secretions were so thick that he was 'satting' low (his oxygen count was lower). It's a cold, maybe more like a chest infection. It gets a little tricky because one of his seizure meds (the one we're going to wean him off eventually!) can have a negative reaction with his 'go-to' antibiotic, so we have to be pretty strict on when it is given. He's been a trooper about it, a little grumpy or sleepy at times but most of the time he doesn't act sick and still has his appetite. If you could pray for his speedy recovery that would be great.

Recently we've experienced some change in Josiah's support staff. There may be some difficulty over the next few months as we adapt and make new arrangments, and we're sad because we really enjoyed working with these three individuals and they were amazing for our son. But it's an opportunity to connect with new people and we are confident that our son will continue to be taken care of well. If you could pray for that as you think of Josiah, we'd really appreciate it.

Grace & Peace.
- Andrew, Marie & Josiah

A Josiah Update - January 31

2009-01-31T07:28:00.000-08:00

Good Morning all

Just a little note to say yup, Josiah's sick. He started antibiotics about two days ago because his secretions were getting so thick that he was satt

A Josiah Update - January 29th

2009-01-29T09:41:00.000-08:00

I'm trying to increase frequency here - it helps in the long run!

Josiah had a day full of clinics a few Mondays back, and we were pretty excited with the progress he is making. He was able to his pressure support lowered another notch so that he's down to 13 (from 16 when he left the hospital last May). If he continues in this way, he may begin trialing off the ventilator in a month and a half! Josiah's diuretic totals were also lowered, a great sign that his body is beginning to manage fluids better - woohoo! Further, a seizure med was increased with hopes of weaning him off of another.

But probably the biggest and best news is that Josiah's trachea isn't collapsing any more!! Yay!! He had a bronchscope at his clinic and even though he was coughing fiercely through the procedure, it was clear that his trachea is strong and improved! Praise God!

We received Josiah's leg/foot braces and he wears them 1-2 times a day. It's very noticeable when we miss a day so we stay on it. While we haven't noticed a big change in his feet, it's pretty obvious that his legs are getting stronger and straighter, and he's standing up (assisted) better than ever. His core strength is also improving, and is demonstrating a lot better balance, able to maintain a sitting position with minimal support.

He definitely growing up - he never wants to stay still! Just a wiggle worm, and often ends up sideways in bed. Marie is convinced his favourite movie is Hairspray (it's on in our house almost everyday!), and we've introduced Josiah to finger painting (a pretty messy activity which - to be honest - I avoid!!)

Also, he's trying harder to talk than ever before! He's getting out the odd "AH!" which is very exciting. In fact, he was so loud in church a couple weeks back that we had to send him down to the nursery because he was being heard on the stage while we were sitting in the back!

Right now Josiah might have a bit of a cold bug - sticky, thick, colourful goobers! So you can pray that he stays healthy. He's also had a couple seizures this week, which may indicate that he's a little sick. He also seems to have chronic ear infections (just finished a round of antibiotics again last week), so you can pray for healing there.

Prayer Requests:
~ Health (fighting a cold?)
~ Chronic ear infections
~ Seizure med increase/future weaning of one seizure med
~ Improved balance and strength
~ That he'll continue to grow in his ability to communicate (hands, voice, & eyes)

That's all. Blessings.
- Andrew, Marie & Josiah

A Josiah Update - January 2nd

2009-01-02T07:35:00.000-08:00

Sigh. Updates are so easier when I remember to write them every two weeks ... :)

Well, where to begin with it all, eh? We were grateful beyond words to have Josiah home for his 'first Christmas'! I suppose that in itself would be enough of an update for us as parents because it is a demonstration of how far things have come in the past year! A year ago Josiah was on the mend from a near-fatal aspiration/chest infection and we didn't know what the future held ...

Christmas was full of visits, friends, family, gift-giving, and snow! Marie and I felt quite spoiled with all the love we experienced throughout the seasons - thanks all. Josiah got to meet a horse close up and even lay in the snow for a bit, which he thouroughly enjoyed until he put some snow on his face! Marie and Josiah (and subsequently I to a point) were sick here and there. Marie had bronchitis for 3+ weeks (still getting her energy back) and Josiah was fighting off something, and currently he has an eye infection (both eyes) which has really improved after only 48 hours.

Continuing with health, Josiah has seemed to lost his appetite and we're trying to figure out what the means. He rarely refuses a bottle, but for the last 3 weeks he hasn't been interested and we've been needing to G-Tube him for every feed (we'd typically just use the G-Tube for just his nighttime feeds). We're trying to determine if it is related to a food allergy, a change in his diet (we were adding a higher-calorie formula to his food), or if it's because he's feeling discomfort from his 'mucus balls.'.

Mmmm ... mucus balls. Josiah has been generating more phlegm in the last month and Marie & I were always under the impression that this was normal for trache patients. Josiah has been puking up these mucus balls at least once a day (up to five times a day, like yesterday) because it is obviously discomforting and affects his ability to digest food properly. But after a few calls around checking in with the dietician and respiratory therapist, we're pretty certain now that it's a virus that generating all these goobers that he's swallowing. No fun at all. Definitely provides a challenge, anticipating them and protecting Josiah from aspirating (not too mention, trying to keep up with the laundry and carpet cleaning!) and it makes him completely exhausted afterwards.

Most of the time his lack of appetite and puking doesn't interfere with his day and he's still pretty happy, for which we're glad. He's loves taking 'steps' and his legs/feet were casted during the first week of December and we're expecting his braces and walker in January - woohoo! Josiah is also really improving in his posture and torso control. He can remain sitting on a couch by himself, and he's now able to pull himself forward - a huge big development of the last 3 weeks! One of the funniest 'development' things he has done recently: Josiah one day purposefully 'fell' out of his seat onto the floor, landing in a perfect crawl position! Marie freaked out, but Josiah liked it so much that he did it 3 more times that day!

Lastly, this month we'll be orientated two new nurses! We're grateful that Bayshore is continuing to try to get us the night coverage that we're asking for. Right now it looks like we'll have Monday-Saturday nights covered - woohoo!!

That covers the highlights of the past month. Thanks for all the prayers and support along the way. I'll sign off with a few prayer requests if you're interested:
~ mucus balls: that he'll get over his virus and that he won't aspirate when he pukes
~ appetite: that we'll figure out why he doesn't feel like eating
~ walker: that he'll adjust well to his walker and that it'll open up a long list of possibilities for him!
~ energy, strength, wisdom, and health: for all three of us!

Grace & Peace.
- Andrew, Marie & Josiah

A Josiah Update - Pictures

2008-12-31T18:04:00.000-08:00

Here are a few pictures from the last couple of months. A proper update is coming (sooner than later!)

Some shots of family time ...

(Hanging with Daddy ... Nov 4th, '08)

(Gruncle Ron, Meagan, & Grauntie Betty-Lou ... Nov 3rd, '08)

(Grauntie Lydyia & Kellie ... Nov 3rd, '08)

(Story time with Grandma Haak ... Nov 1st, '08)

(Mommy & Grandma Neufeld ... Nov 11th, '08)

(Grandma Neufeld & Uncle Wes ... Nov 11th, '08)

(Swapping hats with Grandma Neufeld ... Dec 3rd, '08)

(Sharing a laugh with Mommy & Grandpa Neufeld ... Dec 3rd, '08)

(Great-Grandma & Great-Grandpa Haak ... Dec 7th, '08)

Josiah thoroughly enjoying his time in the leaves at Mill Lake on Oct 26th, '08 ...

Finally, a series of pictures from our Nov 16th '08 'photo-shoot' which netted our Christmas card picture this year ...

Happy New Year Everyone!

Grace & Peace.
- Andrew, Marie & Josiah

Josiah Update - Pictures

2008-12-31T18:01:00.000-08:00

Later Tuesday Night - A Josiah Update

2008-11-25T22:12:00.000-08:00

Some good news.

Josiah's neurology doctor called this evening and through the conversation Marie and her were able to figure out that his Dilantin (seizure med) levels were way low. Unfortunately it's been that way since his last bloodwork (Monday the 17th) and no one reviewed his lab results :(

But on the upside, we're bringing up his levels and he's already showing major signs of improvement. Basically he spent the weekend in drug withdrawl - never ever fun - which was compounded by the fact his seizures flare up through periods of withdrawl - double gross.

Thanks for your prayers. We're praying and keeping our fingers-crossed that he'll have a good nights sleep and be back on track tomorrow.

Grace & Peace.
- Andrew, Marie & Josiah

Tuesday Night - A Josiah Update

2008-11-25T18:05:00.000-08:00

Hello Folks

Just a short blurb to post here.

Josiah has a had a weird/rough weekend. It started with a mini-aspiration Saturday night, which was cleared up by bedtime through suctions, chest physio and some prayer. But he had an absentee seizure through it all and ended up having 8 on Sunday, and about 6 yesterday. These seizures are different from his normal convulsions because they happen while he's awake it's like his brain freezes for 5-10 seconds (lights on, but no one's home - stiff and not breathing).

He re-coops rather well, but the seizure is usually broken with a cough/puke which isn't so fun. Further, this large amount of seizures has really messed up his internal clock and he has been sleeping in just short spurts (only 3-4 hours last night - thank God for a nurse to watch him so we can sleep!)

We've boosted a seizure med and are compensating with some electrolytes since he's had diarrhea all week. He doesn't really have an appetite, but all in all he's been in a really great spirits, with bursts of energy and has been mostly quite content so we're not exactly sure what the problem in.

So prayer for healing, understanding, patience and energy would be appreciated!

Toodles.

Grace & Peace
- Andrew, Marie & Josiah

Late Saturday Night - A Josiah Update

2008-11-22T23:22:00.000-08:00

Hey, this is another post - significant improvement this month!

Just a few things to note and be grateful for:

We had our air quality tested last week as we're trying to solve why the filters on Josiah's ventilator and suction machine are turning grayer faster than they should. This started being a problem as autumn settled in. The good news is that there's nothing in our building that we have to be concerned about: the structure is healthy and Marie (with her respite helpers) does a great job of keeping the place clean. The bad news is that we haven't been able to isolate the particle that is showing up on the filters. In the case of the ventilator, it's really weird because the air has to pass through another filter before reaching the one that is going gray. But the really amazing part is that the air quality tester opted not to charge us for his time, just the lab results - a saving a $300!! Wow! That was a big blessing: thanks Chris.

A couple of days ago Josiah took his first steps!! Marie has a physio exercise for him where he stands between her legs as she sits on the floor with her knees in the air. Josiah supported his own weight (she just uses her hands to give him balance) and he took three steps all on his own! Yay! We're really excited, especially since we found out this week that he's going to be fitted for foot/leg braces in the beginning of December and will get his walker sometime in January. So rad.

Marie and Josiah were also in for check up at BC Children's this week. Everything is looking good and Josiah's ventilator pressures have been lowered from 18 to 16 because he is demonstrating that he can handle his airway much much better. Incredible.

Finally, another 'Praise God' to note: we think Josiah must have aspirated on a little saliva/mucus today during trache ties (yes, he is unfortunately a monster now for his ties - a little too smart for his own good as he approaches the terribles two's). It didn't take long for him to be coughing a lot, elevated rate of breathing and heart rate, sleepy, etc. We caught it late (during dinner really with our guests - yikes!) but we prayed, did a lot of suctioning and chest physio, and Josiah was finally able to bring up everything that was stuck down there! Whew. He ended the night on a very good note, laughing uncontrollably as mommy and daddy made silly noises and tickled him all over ;)

Further, he's demostrating a new side of smartness which is becoming a gateway to a whole slew of potential dilemmas: when his nightlight musical aquarium turns off, he does what he can to get our attention in the next room. Tonight, he disconnected himself from the ventilator! Argh!

In Hope & Expectancy
- Andrew, Marie & Josiah

Sunday Night - A Josiah Update

2008-11-16T23:27:00.000-08:00

Hello Folks

Just a short little blurb here to pass the time before I fall asleep in Josiah's room. Life has been pretty good here in the Haak household, busy busy busy but good. Josiah has had a good couple of weeks. His secretions are thicker and more frequent then in the summer (I may have mentioned that already in the last post), but that's probably a seasonal thing - autumn is just mean for people with traches because filters are never as good as the parts that God gave us. But he's a trooper and handling it mostly well, though there are some days when they are so thick that he screams because he is scared or has to throw up because he has ingested too much mucus (probably didn't want to hear that!)

Josiah is definitely strengthening his legs, to the point where he can push himself up from a crouched to a standing (if we're helping him balance himself). His seizures are minimal which is exactly what we wanted to see. He still gets the odd seizure, especially is he is really exhausted or on the cusp of getting sick, but it has become infrequent and quite managable, a big answer to prayer.

His airway is also getting much stronger. If there is a moment where he needs to 'do it on his own' without the ventilator, it doesn't even concern him - so AMAZING to see! We're excited to attempt at weaning him off the vent in the spring.

See, it was short!

Thanks for rooting for us and praying for us along the way.
- Andrew, Marie & Josiah