Happy Birthday Josiah

2nd Birthday, February 16th 2009

Another year further, another year closer.

I don't often write to Josiah, but this is just how my words were coming tonight.


Josiah ...

... we miss you.

Through crying eyes I remember our happiness and the joy you were in our lives. Glimpses of you live on in your sister; we have begun to see you in her face. We tell her about you often. You would have been so proud of her, you would have been a great older brother. Though I know the waiting is good and right, I can't wait for you to meet her one day.

Your birthday has come quietly this year, though we can feel the sorrow and angst deep in our souls. It's hard to be grateful when milestones such as these hurt more than they heal. I wish that I could honor you with happiness today, but I can only give you tears.

I can't believe this is your third birthday without you with us. Three birthdays in heaven, two on earth.

Stopping to remember feels like saying good-bye all over again.  I wish remembering didn't hurt so bad.

I wish that thinking about your smile wouldn't make me cry. I wish I could remember your gentleness without weeping out of control. I wish that I could recall your strength, courage, and temperment with just pride, and not with all this sadness that overcomes me. Your laughter, your touch, your love. I miss the all these things about you. You are worth remembering, Josiah. Always. But son, you gotta know it breaks my heart so badly. Lament somedays is the only way I can show how much I love you.

Josiah, you are our treasure that God shared with us, with many. You were such an incredible gift, a gift that continues to move and shape me. A gift that has remained at the very center of my heart. And I long to have you in my arms again.

Josiah, we love you, we're proud of you, we're so glad that you are our son.


Love, your Daddy

899 Days

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.

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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.

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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

Delivering Christmas Gifts to BC Children's Hospital

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

 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

Not Feeling Christmasy at Christmas Time

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

Video Part Two - Joelle is Walking!

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

Reflecting on Job 9:12 and 17

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

A New Thing and an Odd Thing

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

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

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

Catching up with Joelle & Family

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

Of Stone and Trees ... Seven Months Later

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 ...

.... 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 ...

... 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

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

Getting Some News - Follow Up

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

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

Of Stone, Trees, and Other Things

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

... we miss you.

~ Love, Mommy & Daddy

Merry Christmas Josiah

(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