Thursday, June 21, 2012

Ode to Chris

So let's just pretend that I am not already 5 days past Father's Day, because I am so over apologizing for my tardiness. 

I don't talk much about Chris in the blog. I am aware of that and have thought about it a lot. I've asked him to write as well - I think it would be useful for people to hear a dad's perspective as most of these blogs are written by CDH mamas. But he hasn't wanted to do that and I have come to respect his privacy to the point where maybe the blog makes it seem like he doesn't matter in this whole thing.

So privacy be danged, this blog entry is all about Chris. Because you should know, if you don't already, how amazing he is. And that I couldn't have done any of this without him. And that, when it comes to being assigned a dad, there never were luckier children than our 4 boys.

When we were expecting Samuel and being told at every single appointment that he had a very slim chance of surviving, my husband remained steadfast in his hope. Specialist after specialist detailed the dire prognosis, gave us numbers and walked us through how our baby would die. And Chris would hear it, nod, look sombre, and then ask about how our baby would live. Honestly, sometimes I thought he must be daft. I would try to make sure he understood and a couple of times he broke down in fear and grief. Then, five minutes later... hopeful again.

One day, as we walked and I cried and anguished, Chris said to me, "I have had a really hard life. And now I have a really beautiful life. And I am not going to let anything happen to my family." And I knew that we would be okay, that my husband's unbreakable hope was his strength, was OUR strength. Whatever happened, we would be okay.

For the last year and a half since that day, Chris has quietly held us up. When I had severe polyhydramnios and a separated symphisis pubis and could hardly walk, he cooked and washed the floor and took the boys bowling while I laid in bed. When Samuel was born, Chris stood between me laying in one part of the room and Samuel laying in another. He kissed our Samuel for both of us before the entourage left for the NICU.

Chris with Samuel, a few minutes old.

During Samuel's months in hospital, Chris took care of our family at home so that I could be at the hospital as much as possible. He still made time to go there every day, to sing to Sam and read their favourite book so that our fourth baby would know his Daddy too. Then Chris went to his really demanding job and gave of his intelligence and commitment there so that we could still have food on our table. I became the master of medical language and managing Samuel's care but I couldn't have done that if Chris wasn't doing all that he did.

Together as we wait to send Samuel for surgery, 25 days old.
I got to hold Samuel once when he was 11 days old and then again when he was 39 days old. My whole body ached with knowing that I had just had a baby, was supposed to be holding and nursing a baby. Chris said that he wanted to hold Samuel but that I *needed* to hold Samuel. I was grateful that he understood that but I was equally grateful for the nurses and respiratory therapists who conspired one day to make sure Samuel finally got into his daddy's arms.

Samuel was two months old. I think that moment has gone down in ICU history because Chris was so effusively joyful, so awed by the experience of holding his fourth son, so overcome by his own love and pride and love.

Chris holding Samuel for the first time, 2 months old.

And that is my husband. Awed by the miracle of life, overcome by joyfulness and love, full of passion and reverence for each experience. Hopeful. Strong. Quick to celebrate others - including me - and wanting nothing except to be with his family.

Our three big boys have come through this ordeal and are not just okay, they are awesome. There were a lot of people involved in helping us but it really is their amazing dad who gave them stability and comfort every single day. Somehow, even though he was exhausted and emotionally drained too, and even though he worked all day, he found the energy to play soccer and have a never-ending Monopoly game and take them swimming and cuddle them to sleep.

And now Samuel has been home for nearly a year and I love watching him with his Daddy. Chris takes Samuel for little walks outside, cuddled in his arms, as he did with all the boys. He is never too tired to snuggle or feed him. Their special thing is when Chris plays his guitar and Samuel dances and plays along with him. It is seriously the sweetest thing ever.

Playing guitar with Sam, 16 months old.

Chris and I are finally out of this survival mode enough to glance up at one another in between things that need doing and little people that need parenting. When I look at my amazing husband now, I see... he is tired, battle-weary. He doesn't know this, but I pray for him. Not just because I could not do this life without him (although I couldn't!), but because I would never want to. He drives me crazy sometimes and I can be a crabby sort. So maybe he forgets that I adore him, that I deeply love and respect him, that I waited for him because he is exactly who I was meant to be with, and that I am grateful every day that my children got him for a father.

So, happy father's day. God bless my Chris. Amen.

Tuesday, June 5, 2012

Sixteen months old: A glutton and a drunkard

I am trying not to keep doing the "a year ago at this time..." thing. Really, live in the moment already. But sometimes it is useful. As I've worried at times about Samuel's eating and growing, I remember that this time last year he was just learning to eat, getting his wonked out insides to digest food and learning to take a bottle by mouth. We were excited if he drank a whole ounce at a time and were putting the rest through his NG tube. It reminds me to counter my "is he eating enough?!" worry with a bit of reverence for the fact that he eats at all.

The other thing that counters my worry is my husband's teasing. I am happy to have him take over feeding Samuel sometimes so that I can have a breather but then I inevitably hover around asking him to reassure me. "Did he eat well?" I ask. And Chris will say, "The boy is a pig. You should see what he ate. He's a glutton and a drunkard!"

Aside from the whole "deadly sins" implications, the idea of Sam as a glutton and a drunkard never fails to amuse me. I instantly have some kind of skid row image of my baby, all 17-some pounds of him propped against a dumpster waving his little bottle of milk and prune juice at passers-by. (Let's hope that's not foreshadowing of any sort.)

About a month ago, Sam's eating habits all shifted. He went from gluttonizing many tablespoons of Greek yogurt to pinching his mouth shut at the appearance of that little yum-and-fat-laden spoon. He shook his head no and used his hand to push our food offerings aside. He wanted only to feed himself. But here's the thing, Sam... cheerios and chunks of watermelon do not a growing baby make.

Sam even needs to feed himself his own bottle. Sigh.

I called Dietician in horror. What could be wrong?! Why wouldn't he eat?! He doesn't have the reserves for a hunger strike! What was I going to do?! "Corinne," lovely Dietician said in her calm, slow, way. "He's a toddler."

Um... what? Oh.

Yea, I guess he is a toddler now. He doesn't toddle yet so I kind of forgot that he's developmentally on track in other ways. A toddler. When did that happen?! I just got him!

This did give me a plan though. I have already done my time at Parents-of-Toddlers Training School. I recognize the itty-bitty bids for control and get creative. I spot calls to power struggle and expertly dance around them. Sam is no match for me. I diversified my food efforts, gave him lots of options to self-feed while still sneaking in the full-fat yogurt mixed with chia seeds.

A couple of weeks after that, Sam shifted again. He became a glutton and a drunkard to the tenth power. The list of foods that he was eating became too long for Dietician to write in her notebook. His fluid intake was just right. We officially called an end to the "NG top-ups as needed."

But he's still not really growing - at least not consistently enough to maintain his own little Sam-line at the bottom of the growth charts. So he is a glutton and a drunkard but I keep worrying anyway.

Bless his team of developmental gurus at the hospital who help give me ideas for our day-to-day and keep reminding me that I am doing a good job. I know that CDH babies use a lot of calories to breathe and so tend to struggle growing. And I am pleased that he's doing well enough that we can manage this without tube feeds now. But still my sense of failure surges when there's something I can't make just right for my kids.

Sam is fabulous otherwise. He is super happy, smiles big, giggles a lot, has various games that he plays with each of us. He started doing this thing where he would look at me and open his mouth. I thought, "He's hungry! My baby is so smart and he's come up with a signal for hungry!" After a couple of days, I realized that the open mouth wasn't linked to wanting to eat. So I thought, "He wants kisses! My baby is so sweet and he's come up with a signal for kisses!" But no. I conceded that he was opening his mouth because he was opening his mouth.

However, I noticed that I make this look of mock astonishment at him all the time and his open mouth was mimicking me. He was doing it to me independently, inviting me into our shared expression. I would do it back again and we would laugh. So not hungry or kisses but maybe "play with me, Mommy." And maybe also, "Can you even believe how astonishingly awesome I am?!"

The words are coming. His most unmistakable word is da-da. So we have this conversation:

Me: Say ma-ma?
Sam: Da-da! Da!
Me: MA-MA. (uses ridiculous amounts of enunciation.)
Sam: Da-da.
Me: Mmaaa-mmaaa.
Sam: Uhn-DAAAA! (yells)
Me: Look it, do you know what you've done to me?! I need a Ma-ma!
Sam: Mmmmmm... da-da-da-da-da-da. (whispers)

Okay, I don't really say that last part. Just a momentary channelling of ancestral mother guilting tactics. The thing is, Sam CAN say ma-ma. But he WON'T. And what does that tell you about the child?! Rotten.

Just GUESS what he is saying here. DA-DA-DA-DA.

His most rotten tendencies emerge at night, where he likes to wake up every two hours to be snuggled and rocked. And despite the fact that his parents are nearly dead with exhaustion, we oblige. We've read the books on attachment. And we've failed the sleep class at Parents-of-Toddlers Training School already. Three times now. So on we go.

But look at all this... eating, sleeping, talking... normal stuff. Can't complain about that.

I know. He is going to KILL me. But can you even stand that scrawny sweetness?!

We continue to work on core strength development. Sam can stand but not manage a hands and knees position because of his chest and shoulder strength. He could possibly walk before crawling - I know some typical babies do this. We're trying to keep crawling in the mix though as he needs those muscles.

Sam's vision is something that is on my radar all the time and I've gotten very used to managing light for him, finding the right distance for him, exagerrating movements up close so that he can learn things like how to wave bye-bye. I've also gotten used to interpreting his nystagmus for other people who meet him.

It makes me sad when people notice his eyes shifting and they looked puzzled or pull back from him. I get it, though, really get it. I thought of how I would like to be led to be with a child who responds atypically. I might feel uncertain too but deeply want to know how to connect. And so I tell people, "Sam has a hard time seeing and that's part of what his eyes do to focus. If you move in slowly, you'll find the spot where you know he sees you." I don't do this with everyone; really, strangers at the grocery store can think what they want because I just want my milk and toilet paper. But it's my job to help Sam's community know how to respond to his vision so that he feels supported and included and normal. I want to help him know - and help his brothers too - how to make this not a big deal. It's just Sam.

Given that it is just Sam, it actually really stung to get the letter approving Samuel for the disability tax credit. There it was in black-and-white, the government acknowledging our child as having a permanent visual impairment, as being "disabled." But as one of my friend's pointed out, we who know what Sam has been through know that he is "super-abled." They must just not have a tax credit for that.

Thanks for checking in on our Super-Sam. I've not much time for blogging lately because, in addition to my client work on Saturdays, I am teaching a spring course for the University. My time is pretty spoken for (as if it wasn't already before). But this blog is still important to me. Your presence and comments have been a lifeline for me. Thank you.

[Awesomely beautiful photos by Mike Drew.]