The Long Haul

It has been a long time since I've written. Partly, I have had really no time. As my CDH mama friend Miranda says, "this 4 boy thing is no joke." Partly, I lost some of my heart for delving into our CDH world. As I've talked about before, I've connected with the CDH world through blogs and facebook and have found pragmatic help, emotional support, and healing. But it is hard; these CDH kiddos who we love and cheer for sometimes soar, sometimes struggle, and sometimes die.

Our tight-knit Canadian CDH circle includes Erin and her mom Kelly. Sam and Erin were born a month apart and each had long courses in hospital. Kelly and I shared ideas about keeping oxygen tubes attached to their sweet cheeks and strategies to get them walking instead of bum scootching. Samuel and Erin both have adoring bigger siblings and dispositions that draw others to them. There was that line of connection to this family I never met but who understood things that our closest friends could not. Erin's sweet face was always a light in my facebook day, even when she was sick, in hospital again, struggling. 

Erin at 18 months. 

On November 1st, Erin's heart gave out, she was airlifted to B.C. Children's Hospital, and she died. Here's a little post about her from mutual CDH mama-friend Julie.

Losing Erin was beyond sad. I cried and cried. Watching her mum grieve her is heart-breaking. It put an extra layer of fear in me that I could lose our Sammo too, that it's not ever okay to exhale and consider this CDH demon done. It also put an extra layer of gratitude and awe for the blessing of Sam's journey. I think of Erin and Kelly every day, in honour of the light that Erin's short life brought to many and as a reminder of my own blessings.

I think of Erin, too, when things feel hard and I'm trying to remember how much harder it really could be. Sometimes this perspective works but usually it just leaves me feeling guilty that my gratitude for Sam can't erase my exhaustion and overwhelm. The last few months have been a bit rough... Sam's reflux and constipation, a prolific barfing illness, his surgery and recovery, and three hideous respiratory viruses in a row. Sam has been sick nearly non-stop for two months. Now, on day 12 of his encounter with the most recent plague and, after multiple consultations with his specialists and hospital trips, he is finally getting better.

It's never fun to have sick kids; the big boys have been ill through all of this too. But they clear these viruses in a fraction of the time it takes Sam. Their lungs are strong enough to cough effectively and they have the reserves to bounce back if they don't eat for a few days. And I don't worry that a bad cold is scarring in their lungs or over-stressing their hearts.

When Sam gets sick, Chris and I are reduced to a few hours of sleep a night, taking turns holding Sam upright so that he can cough. In between the rock and sway and worry regime, I lay next to him counting his respiration rate, trying to figure out if his breathing sounds laboured, if his fever is too high, if it's time to go to the hospital, if he's going to be okay. Then I get up and make lunches and organize soccer teams and fit in my professional self. I'm in charge of Sam's hospital appointments (there were seven in the two weeks before Christmas) and his fine motor, gross motor, speech, vision, and feeding therapies. All of these therapies go out the window when he is ill. Breathing and hydrating always take precedence over massaging finger contractures and practicing communication.

As well, there have been questions lately about whether Sam is just catching up developmentally or if he has an underlying condition. Perhaps he has a genetic syndrome or some deficits created by his life-saving therapies. Or perhaps this is just his normal trajectory as a toddler with 6 months in hospital (25% of his life), 3 highly invasive surgeries and a visual impairment. So begins a new series of appointments and tests and questions and fears.

Every time I thought about writing in the blog, it just sounded too whiny. And holy mackerel, I hate whiny. But there it is. This must be the "long haul" that the doctors kept referring to early on. Sam has had amazing milestones along the way and we have found our own version of normal. But there hasn't been a point where I've said, "Whew! Glad that's all over." And that is just how it goes. It is hard and we are tired. But I can do hard things. And in exchange, I have been given a most beautiful life. Everyone has their portion of "hard." I know very well that we have a much smaller portion of hard than most. And I have a much larger portion of beauty than I could have imagined.

Christmas magic... waiting for morning to come. 

Sam cuddling with Daddy to stay out of the mayhem.

Sam's 2nd Christmas. This year he did some present-tearing-open. 

Winter fun with a wee ice rink in our backyard.

I have come to understand the parents of medically fragile kids who say they would not change a minute of the journey. I used to think "really?! Not even those really horrific minutes of watching your child suffer?!" We don't get to give back the bad stuff and keep only the good. I might wish for some moments to give me greater comfort. But I would lose something in that and it would alter the next moment forever. I don't want to give back any of my moments with Sam. Ever. He is the gift that we didn't even know we needed.

God bless Erin for shining such love on the Earth in her 19 months of life. God bless her mama and all the mamas in my circle who show me what grace and vulnerability, strength and tenderness, there is in losing your child. God bless my boys, my five ginormous helpings of beauty. Sorry, whiny, but this is where the rubber meets the road.