Sunday, March 11, 2012

Love Givers

One of my biggest learnings in the last year and a half has been how to let people help me. I'm not good at accepting help. (To those who know me well, thank you for not publicly snorting at my understatement.) I'm much better at giving it. That's what I do. But then life circumstances kind of came and kicked the carp out of me and I had to accept help. I couldn't NOT accept help.

That didn't make it easy to receive, though. Every time someone did something nice for us, I cried. It was awkward for me and yet deeply, deeply moving. Also, I think, it was healing for me. Thanks to repeated teachings from the Love Givers inspired by Sam, I've gotten a little more graceful about receiving help. And the magic of every gesture is still there for me.

Help often came from unexpected places. Parents at school, colleagues from work. Crazy things happened like my friend Lisa offered to spend two days repainting our family room because we just never had time. And I LET her do that. People who I didn't even know were praying. Praying! Women at heart-sister Lori's church would press cash into her hand for our stroller or give her a bag with food and a homemade blanket. I'm familiar with Love and consider myself pretty connected to it. In my life before Sam, I had never contemplated that this kind of Love was just walking around out there ready for MY family.

I want to tell you about some special Love Givers in my circle. You know how there are some people in your life who you don't really know but you actually really do? You haven't had a lot of time together and you don't know all the details of each others lives, but you somehow just *know* them in a beautiful spirit kind of way. Carissa and Lesley are those kinds of people for me.

Carissa and Lesley know about hanging out in the hospital with your baby. They have both done their time with fear and prayer and hospital-world-depletion. They have both walked out with grace and wisdom and gratitude. And then they turned all that into a desire to love on other people. They are like that.

In a whole bunch of little ways, they have woven themselves into Samuel's loving quilt. There was an ICU Survival Kit that showed up one dark and scary night early on. It had things like tea, a coffee card, and hand cream. There were books with short, simple stories for mommies with no access to even their most frazzled brains. There were prayer beads that I have worn every single day in the hospital, handmade by Lesley using special magic beads to remind me that God is listening.

An envelope of cash arrived another night, tucked in with a bottle of wine. Carissa collected money from people who don't even know us but who wanted to help. It was the exact amount needed to pay for our monthly hospital parking pass. These were the tangible gifts but there were other important gifts. Through their messages in email and on the blog, they let me know that I was not alone, that there were these other women out there who walked where I walked, women who had come out the other side with their families and their selves in tact.

When Samuel was hospitalized for his surgery in February, Carissa decided that she would love on the big brothers. She called upon her team and a package was delivered to our house for Valentine's Day. I came home from the hospital that evening to find my boys on the floor surrounded by books, gift cards, candy, baking, DVDs, games and toys. Just for them. Amazing. Then cookies and loaves appeared on our doorstep too. Thank you Kim, Jamie, Susan, Carmen, Christine and Ryan who I don't know and love. Thank you Jana-Lynn and Lesley who I know and love.

Extra super-duper special to me were the cards acknowleding and encouraging Daniel, Zachary and Jacob and the prayer beads that Carissa made for each of them to honour their amazing big brother journey. They have beads just like mama. To remind them that God is listening.



Also, there were two candy bouquets from - get this - some of Carissa's students. They suggested we could share one of the baskets with a special hospital person and we did just that, giving it to the family across the hall from Samuel in the ICU. So the Love passed on to the 4 siblings of Sawyer, who has spent his whole 3 months of life in ICU. Thank you Emma, Victoria and Megan for being kids willing to care so much about other kids.

On one of my walks with Zachary recently, he said to me, "You know, Mum, there are a lot of disadvantages to you being at the hospital all the time, but one of the big advantages is that people sent us candy and stuff!" Spoken like a 7 year old.  

Thank you Carissa for being one of the most open-hearted, faith-filled people I know. You've taught me more than you know and I will have you in my heart every time I get to pay forward such Love. Thank you Lesley for the way that you give of yourself and for the way that your humour and words can lift me right up. (Special thanks for giving me the phrase "big girl pants" which is such a smiley way to remind myself that I can do hard things.) I hope to be more like you both, walking this world with your kind of grace and wisdom and gratitude.

To Carissa and Lesley and a whole whack of other people reading this who I know and who I don't and who I love.... Thank you for bringing Sam into your great big hearts and for sharing him with your own teams of Love Givers. As it turns out, being able to receive AND give Love has just turned me into a New and Improved Love Giver! Which is just a cool thing to have figured out in all of this.

Thursday, March 8, 2012

Goodbye, other shoe

Four weeks ago today, Sam had a 12-hour surgery to reconstruct his diapragm using the lattisimus dorsi muscle in his back. This is him today:

Okay, seriously. Brown cords. Sweater vest! Tube in nose!! Lego-Guy comb-over hair!!!
WILL THE DEGRADATION NEVER END?!
And we've added a dorky hat. Hilarious, mum. Really funny. 

We had follow-up appointments up the ying-yang on Tuesday. The highlight was a conversation with our surgeon, Dr. Mary Brindle. It went sort of like this:

Me: So for a year and a half now, I have been waiting for the other shoe to drop. And now I have this amazing sense of relief, but I want to make sure it's actually grounded in reality. I need to know what the other shoe might be now.

Dr. Mary: There is no other shoe.

Me: So he is like really, really likely to reherniate now, right?

Dr. Mary: He's really UNlikely to reherniate. Really, really UN. LIKELY.

Me: What did I say?

Dr. Mary: You said "likely."

Me: Wow. Paging Dr. Freud. So really UNlikely to reherniate. That's it. He has a diaphragm. He has two lungs. He just needs to recover now.

Dr. Mary: Yes. And he will.

So, um, that was pretty great. Then we discussed the risk of bowel obstruction, which happens with some CDH babies when their body tries to digest the synthetic diaphragm patch. But Sam has muscle -- his own growing, moving muscle -- between his bowels and any patch material. So that's not likely to happen either. And then we discussed the risk of scoliosis, which sometimes happens with these babies because the two sides of their chests don't always grow evenly. We just have to take a wait and see approach on that one.

Then we went downstairs for Sam to have a chest x-ray. This gives us a post-recovery marker of what his anatomy looks like and just makes sure everything is okay in there. On the way back upstairs to clinic, I stopped to fill my water bottle. Somehow, that was enough time for Dr. Mary to have reviewed the chest x-ray and we returned to Sam's exam room to find a note written in pink highlighter. It said:

CXR looks awesome!!! Mary.

I kept the note.

So the only even sort of kind of bad news of the day is something we expected. Our Sam is one skinny baby. He lost nearly a pound. And when you haven't even eeked out a whole 17 pounds in your life, that's a lot. Two months ago, before we found the reherniation, Sam was hanging off the bottom of the growth chart by his fingertips. Now that growth chart is a scribble in the distance. So we will continue NG tube top-ups for a while until he is strong enough to take all the necessary calories on his own.

Unfortunately, the (many) things I know about putting on weight do not apply here. From what I can gather, I should not feed my baby potato chips and ice cream and burgers. Go figure. Sam just had a major trauma to his chest and back, to his heart and lungs (especially since he also got pneumonia in ICU). Even respiration uses extra energy for him. We need to try to get lots of quality calories into his tiny belly so that he can grow and heal. Luckily, I have some mama tricks and a fabulous hospital dietician up my sleeve. (Heehee. Enjoying the image of Candace tucked into my sweater sleeve, so I'm not going to adjust that sentence.) 

Next up is physiotherapy and occupational therapy to help Samuel catch up on his gross motor and fine motor skills. Oh, and getting me and my little family of six all whole and healthy and normal again. Because I surely have the grace and wisdom to know that we are never guaranteed another breath, but I don't like living with real threat hanging over my family either.

You know that cliche that says, "live each day like it's your last" - ? Well, I don't recommend that, actually, unless you're super evolved and can be all joyful and connected and peaceful while really *knowing* that the other shoe is gonna drop shortly after nightfall.

Goodbye, other shoe.

Just one more photo.... before I topple over....

Friday, March 2, 2012

Better than good

Sam is 13 months old - 395 days. He is 3 weeks post-surgery and he's 4 days home. Yes, we are home. It is good. Actually, it is better than good, better than I even expected. Sam is so happy. He fusses if he's not near us and likes to be cuddled a LOT. Fair enough. He's eating a little more every day, getting stronger. I figure we'll be done with the NG tube top-ups within a couple of weeks. He gets ibuprofen a couple of times a day but doesn't seem to need much in the way of pain management, which is crazy.

Best of all, my boys are all together. And after seven weeks of holding my breath waiting for this to be over, and a pretty darned rough year and a half before that, I am exhaling.

I knew that coming home would be a bit stressful for a while as I looked after his surgery recovery on my own - managing the NG tube stuff and medications and feeding him so that he can heal and poop and gain back some weight. His passing the oxygen test was a bit borderline so I need to be vigilant that he's holding his own without it, especially while eating and sleeping. And Chris and I are pretty beat up and crazy-exhausted so I'm aware that we're doing this with only partial access to our cognitive and physical abilities.

So yea, there is still "stuff" and the anxiety is wholly available if I let myself go there. But the relief seems big enough to compensate. Because I just realized something: the really hard part of all this might just be over. Sam is not likely to reherniate now that he has the muscle graft repair. The only other surgery is for his one undescended testicle, which is such a mini-surgery compared to what he's been through that I figure I don't even need to be there. I'll just send him in a taxi. (Heehee. Not really.) Oh, and he might need some eye surgery down the road but I don't need to fret about that just now.

So no more big scary surgeries. He is strong enough that a cold is not likely to hospitalize him. Flu and RSV season will be over soon. He's a whole year old and has a new diaphragm and is showing us that he's even stronger than we thought - and we already thought he was strong! There's physiotherapy and various developmental bits and the vision issues. But I can actually picture myself worrying about *normal* stuff now, like giving away baby clothes and choosing a preschool and giving constructive responses to Sam's cheeky backtalking and who he has a crush on and son where the heck did you put the car keys when you came in last night?! Mm-hmm. That'll be good. 

That feeling that the other shoe is about to drop... and not being able to talk myself out of it because there really is another shoe... that feeling has eased some. I think we're okay. And if this is my ridiculous optimist self talking, then I just want to enjoy her for a little bit.

When Sam was officially disconnected from all his wires and I could move him around, I held him and stood in front of the mirror so that I could really see what his back looked like. I cried, which is not exactly an event of cataclysmic rarity, but still. He has a 2 inch scar in his armpit from where the lattisimus muscle was detached at the top. He has a 5 inch scar where everything was fixed up and a couple of other scars for the drains. He has a divet in his back where part of his rib was cut out to make space for the muscle to be pulled across the front. This is on top of the three scars he already had from the other two surgeries and a legion of mini-scars from his various central lines.

These are the markers of his journey, of his almost dying, of his fight and strength, of enormous vats of love, of his gifted medical care. These are the markers of his miracle.

The other day, Chris and I said to Sam, "We're so sorry, Son, for all you've had to go through." And I could picture Sam responding, "What do you mean? Where's my lunch?" Kids live in the moment. When they're sick, they're sick. But when they're well, they're well. They don't reflect on how rough things were and review their mixture of trauma and gratitude and blah blah blah. They just... ARE.

One of the many things I've gotten out of this journey is how being truly present and in the moment is hard but magical. It's a good place to be. Better than good.

Here's Sam's take on all of this. It's only 12 seconds as he's a man of few words. And his mother isn't smart enough to figure out how to rotate the video so that you don't have to crane your neck. Sorry. Oh, and don't turn your volume WAY up or you'll also have to hear my other kids arguing.