Thursday, January 23, 2014

My kid is awesome

I have to share a video with you but it'll have to wait until tomorrow because my internet is slow, so stay tuned.  I took it yesterday at the hospital and it proves my son's awesomeness.  Caleb had his third biopsy since his transplant so we spent the day at Riley.  They used a catheter to go in through his neck to take samples of tissue from his heart.  Before his cath, he had to go and have blood drawn.  This particular nurse had never drawn his blood, and she asked him before she started, "Don't you want to sit on your daddy's lap?" and he said, "No, I'll sit by myself".  I don't think she knew what to do with this nearly-3-year-old who had no apprehension about what she was about to do.  So I took a video of him getting his blood drawn.  He blows us away.

After blood draw, we headed to the cath lab and he got changed into his lovely little gown, which he proceeded to dump bubble juice all over.  I went back with him and stayed with him until he was all the way asleep under anesthesia.  He never once cried.  He held my hand, and laid down on that table and let them put the mask on him, breathed into it steadily until he was asleep.  As unsettling as it is to see your child go under anesthesia, my discomfort was outweighed by my pride.  Caleb is so strong and I could not be more proud of him.  

The cath took about an hour and they allowed him to wake up shortly after it was over.  That was the only hard part of the day; coming out of sedation is hard anyway, and we weren't there of course and he hadn't eaten in almost 24 hours at that point.  He was crying pretty hard for me when they wheeled him into the recovery room where Daniel and I were waiting for him.  He sat on my lap and just laid his head on my chest for a good hour before he was totally comfortable again.  I let him eat a cupcake before he ate his dinner and that helped.  He then proceeded to eat for a solid 30 minutes, including most of the sandwich I had gotten for myself.  For the rest of the night, he was in a perfectly good mood.  I couldn't stop kissing his little face.

I know it might sound weird, but I love going to Riley.  It's like going to my other home with friends I miss and love to catch up with.  When Caleb was inpatient, our transplant coordinator, Debbie, used to always tell me that as soon as Caleb got his heart, we would go home and it would all just seem like a blur, almost like it never happened.  That has not been the case.  I could wake up tomorrow morning in my bed at the Ronald McDonald House and it would feel completely familiar.  But that's not a bad thing.  That place is where my son got better, where we got another chance for a life together as a family, and I will always feel a connection.  It was our home for a year and that doesn't go away quickly.  Or maybe ever.

We visited with lots of nurses, and even some of our friends who are still inpatient after months in the hospital.  It made my heart ache to spend time with people that I so desperately want to have what we have, a new heart for their child so they can go home.  I couldn't get them out of my mind... I talked to a friend, Linda, whose daughter has been there since last July, and their room is next to our old room.  I could see the physical exhaustion and desperation on her face.  I prayed for her last night when I got up in the night to feed Lucy.  I wished I could do something for them.  I know it encourages her to see Caleb.  She told me that she wasn't interested in breaking our record for how long we'd been there.  I hope with all my heart that she doesn't.

This morning we were all exhausted after spending the day in the hospital and getting home and to bed late.  Caleb had physical therapy and I wondered how he'd feel about it after his day yesterday, but he loved it as always.  Caleb has physical therapy twice a week, just for the next few months, to help him build strength after being weak and sick for so long.  He is quickly making up for lost time.  In fact, in his first week he already met his goals for the month!  Brett Fischer, Caleb's physical therapist, has started an organization called Victory Lane that focuses on families of kids with special needs.  Victory Lane exists for the WHOLE family, and not just the child with special needs, which I think is SO important.  I like going to physical therapy too, because Brett is one of those people who gets what our life is like.  You'll definitely be hearing more about Victory Lane because it's a cause that is near to my heart and I hope I can be involved as it grows.  

On our way home from physical therapy, we got a call from Debbie saying that the results from Caleb's biopsy were great, that everything looked great and the team is thrilled with how Caleb is doing.  We celebrated by getting McDonalds for lunch (not my choice) and having a dance party in our kitchen.  We cranked up the music and Jonah attempted to breakdance while Caleb tried to copy.  Daniel's moves were probably my favorite of all, and we finally had to stop because my poor children were desperate for a nap. Caleb slept for four hours... I think he'd earned it.  A full day at the hospital including a heart cath, and he gets up in the morning and rocks it at physical therapy?  That kid could have probably asked me for anything today and I would have said yes.  Good thing all he wanted was a McDonalds cheeseburger.

I know we won't always be the ones getting good news, so I cherish these days.  I remember, all too well, that not long ago we were the ones sitting in a hospital, waiting and watching our child get sicker.  Tonight I am going to pray for those parents, my friends who are still waiting for their good news.  I'm praying for their turn to come to have a dance party and for God to sustain them while they wait, just as He did us.  

Thursday, January 16, 2014

Return of the Kinnairds

Happy Winter!  On principle, I really want to be one of those people who enjoys each season for its own unique beauty… but holy crap, I can’t wait for spring.  I do love the snow, though, and I’m hoping to take the boys sledding soon.  We started what I hope becomes a new tradition back in December; during the first big snowstorm we waited until after we’d eaten supper one night and then we all 5 bundled up and took a walk in the snow at nighttime.  It was so much fun to walk around our neighborhood and look at all the Christmas lights.  The boys loved it so much they would have stayed outside until they had hypothermia.  When we got back, we turned on Christmas music and I made hot chocolate with whipped cream and sprinkled some green and red sugar on top to be extra fancy.  The boys loved it….  Ok, ok, winter has some great moments.  Christmas was great of course, and none of us wanted to take down our tree.  I took this picture on January 3, when I was getting ready to take the tree down and realized that I hadn’t actually taken any pictures of it yet.  I'm kind of the worst when it comes to remembering to take pictures of my kids. 

Caleb is officially out of his strictest isolation period and is now able to leave the house some, which has done wonders for my mental health.  Towards the end of December I was getting dangerously close to losing my mind.  We are still being pretty protective of him.  We try to minimize his exposure to groups of people, and especially groups of kids.  Once flu season is over, he can really be more free. He has had a cold, and survived it, so now that we’ve gotten over that hump, I’m a little less freaked out about the whole thing.  Being a germophobe is a totally new experience to me.  Before Caleb’s heart transplant, I was much more of the so-what-if-he-licked-the-ground mentality.  Now we go through hand sanitizer by the gallon.  Our official position is that we are as careful as we can be, but we want him to live his life.  I want him to do normal stuff.  Like go to Wendy's when his mommy is so cooped up that she is stupid enough to take three kids to a restaurant by herself.  (This really happened, as evidenced below, and it actually was pretty fun.)

It’s funny… we’re starting to do normal stuff, but I still don’t quite feel “normal”.  I still don’t totally feel like we’re “home”.  Even though I am so happy with how my life is going and so thankful for everything I have, I feel a little off.  Well, sometimes more than a little off.  I don’t know what I was expecting, but our new life is a little unsettling sometimes.  It’s hard to put into words.  The best way to describe what I’m talking about is summed up in a scene from Return of the King.  (If you are not a Lord of the Rings fan, I’m sorry.  For you.)  In Return of the King, at the very end, the four hobbits return home after being away for over a year on an epic journey.  During that year, they have traveled so far and seen things they never knew existed.  They faced evil and war and pain and loss.  And after all of it, after eventually triumphing against all odds, they return to the homes they had longed for.  There’s a moment where they go to the old tavern where they used to spend their time and they sit down together.  It all looks exactly the same as it did when they left, and you think they must be so glad to be home.  But they look at each other in silence.  And you know that even though they are home, life will never be the same for them.  They have changed, fundamentally, because of what they’ve gone through.  I watched that movie for the first time in a while and I couldn’t stop myself from crying during that scene.  I cried because I understand that sometimes you’ve just gone through too much to ever “go back”.  

Time makes a big difference.  I know that the longer we are here, the more comfortable we will be.  I know that many parents who have gone through what we have gone through experience post-traumatic stress disorder.  That was surprising to me when I first learned it, but it isn’t now. It makes perfect sense.  The last year of my life was traumatic.  I have gone through something that will always be a part of me, something that leaves me feeling a little separate from the people in my life.  I’m so thankful for Daniel.  We feel like a couple of soldiers that fought and survived a war together and I know in him I have someone who truly understands me.  And I’m so thankful to have such wonderful friends and family in my life who make “home” feel more like home all the time.  I have a beautiful life and my hope is that I am gaining wisdom and strength with each season I pass through.  This season has a lot of value and I’m thankful for it.

To my fellow “soldiers” out there, those who are in the trenches of life and have gone through valleys of pain that felt unbearable at the time, just know you aren’t alone.  And when you come out of that valley, it’s ok to feel like “home” is harder to adjust to than you thought it would be.  You’ve gone through something significant and you aren’t the same person you were.  I don’t have great answers and I don’t know how long this will last.  Just know you’re not alone.