Goodbye for now, my friends

Have I really not written anything since April?  Wow.  Well, it's certainly not that life has been dull (what would that look like?)... I simply haven't felt inspired to blog.  I've just been having a happy, blissfully busy summer.  But an entire season has passed so I figure I will go Michael Phelps on ya'll and come out of my retirement to write about life in the Kinnaird house these days.

A couple summer highlights... boy, has it been a summer.  To think that a year ago, my sweet Caleb had never run outside (or anywhere), or climbed a tree, or seen the ocean.  In those days, he didn't know any home other than his hospital room and he wasn't even strong enough to step up onto his physical therapy mat.  That sick boy is gone.  Instead, I have a rambunctious little 3-year old who spends his days playing on his swing set (the love of his life), wrestling with his daddy, and chasing his big brother everywhere he goes.  Tonight I was fixated on this picture of Jonah and Caleb at the park a few weeks ago.  I couldn't stop staring at it because I still am not used to watching Caleb run and play, a strong and healthy little boy.

It just NEVER gets old.  

So we've been busy, making up for lost time.  We went to Florida and played at the beach for a week.  We went to the Great Smoky Mountain National Park and played in the mountains for a week.  We've biked and hiked and gone to the zoo and eaten ice cream and gone to the State Fair... it's been wonderfully exhausting.  Here are a few of my faves from the last few months...

Oh, I do have a baby daughter as well.  Poor Lucy, third child.  Here is some proof that she exists, so that she can't say we never took pictures of her.  She's 10 months old next week, crawling and pulling up and always trying to get in on the action when her big brothers are playing on the floor.

I am pretty obsessed with that face.  

Caleb has continued to do SO well.  Since spending the weekend in the hospital over Easter, it has been smooth sailing.  We are coming up on the one-year anniversary of Caleb's heart transplant, which seems hard to believe.  As this milestone approaches and we are gearing up to celebrate, we also are preparing for some tests at the hospital as well.  Caleb will go next week for his first full heart cath since he got his new heart.  He will also have his fifth biopsy since his transplant.  I am just assuming all is well and expecting all good news.  But of course it's unsettling to think about waiting for test results, and it's always emotionally painful for us and physically painful for Caleb to go through these procedures.  It is, though, a part of our life.  We can have the most wonderful days and weeks and months that go by, but in our hearts we always are aware of Caleb's reality.  We don't dwell on it, or worry about the future, but we are aware.  We are aware that the average heart lasts around 10 years (we have also heard 13 years)... we are aware that he will someday need another transplant, and we are aware that some kids don't make it to that point.  We are aware of all the possible risks and complications from years of having a compromised immune system.  We are aware that there will be more bumps at some point in Caleb's life.  We are aware that our finances are going to change when Caleb's disability Medicaid coverage ends in a few months.  We are always aware.  But it doesn't change how we live our lives, except that it makes us thankful for every single day.  We make the most of our time and we laugh a LOT.  Life is good and we are living it to the fullest.

I don't see myself continuing to blog much, maybe not at all.  I'll never say never, but for now, writing is something that played a very important role in a specific time in my life. When I go back and read what I wrote over the last couple years, I am amazed at my own story and can hardly believe that was me writing it all!  Writing has been therapeutic for me, both because it helped me process all the pain and joy I've experienced and because it allowed others to go on this journey with us.  I know that so many people have been touched by Caleb's life.  And what a blessing to know as a mother that so many now share in my son's story.  I am so thankful for all the good that has come from this blog.  I never would have dreamed that the words I was typing would go out to so many and you will never know how much strength I gained from all of you following along.  Thanks for reading.  Thanks for caring and praying and sending us your love.  This blog will always be a significant part of our story and I will go back to it often, I'm sure.  I invite you too as well.  When you need to remember that God is good even in our pain, stop back by.  I will be praying that our story continues to be a source of joy and encouragement for ALL of us. Blessings to you and much love from the Kinnairds.

Shock to my system

It was going to happen eventually, and I'm just happy we had six great months before Caleb was back in the hospital.  Last Wednesday, Caleb had his fourth (or was it his fifth?) biopsy and heart cath since his transplant.  And on Thursday, we got the first unfavorable report we've gotten in all that time.  Our doctor called us and explained that because of Caleb's recent illness (he had a cold that became a raging ear infection and he was incredibly sick for days), his immune system was out of whack.  They wanted us to bring him in right away for a 3-day hospital stay that included two rounds of a treatment called IVIG.  Fortunately, there was still no sign of rejection, but it didn't stop me from feeling like I was back on shaky ground.  When we got off the phone with the doctor, after being told Caleb needed to arrive the next morning, Daniel said, rather poignantly, "You know how people shove their dogs' faces in their own poop when they poop on the floor?  I feel like someone is shoving my face in a reality I want to pretend isn't there."  Well... that's one way to put it.  We laughed, but in all seriousness, I felt my confidence start to crumble.  We scrambled to make plans... what were we going to do with Lucy?  Jonah?  Who was going to stay at the hospital with Caleb, and what plans did we need to move around for this unexpected trip? All things considered, we pieced together a good evening with our kids and went to bed with a, "Alright, let's do this, whatever 'this' is going to be" mindset.

It was very bizarre to check back into the Heart Center.  We had quite a welcome, lots of people coming to hug us and say, "I'm so sorry you're here, but it's so good to see you!"  It wasn't that bad at all, other than when Caleb had to get an IV and it took FOUR tries, poor guy.  He was understandably super upset, but then when each attempt was over, after just a few minutes, he was right back to his happy self.  What a kid. 

We did our thing and moved into the room.  The boys would ride the cars around the hallways, with Caleb attached to his pole again, and it would have felt like deja vu, except that we've added a baby to the mix.  Lucy was a champ, she would take naps in Caleb's room and allow us to pass her around.  We made it work, with a healthy dose of fun and optimism, just like we always do.  I decided to stay in Caleb's room, Daniel took the other two kids back to the RMH to sleep at the end of each night, and things went pretty smoothly.

But... I couldn't keep this nagging thought out of my mind... it's always going to be like this.  We will always have hospital stays and we will always be uncertain about Caleb's wellbeing and future.  We will always have to watch our son try to be brave for procedures and pokes.  It might be months and months of being able to almost forget about reality, but we will be faced with it again at some point.  I just kept thinking, let's get out of here and get some good news and go back to Caleb being fine and life being good.

Then on the second night, Caleb got sick.  He woke up crying of a headache and vomited in his bed... a lot.  And he puked on his IV dressing, so we had to change that, and his bedding and everything.  He had a fever.  And when I called Daniel to tell him, very unfortunately he said he had just gotten sick.  So he had to stay away, just in case they happened to have different things.  We didn't even know if Caleb could finish his treatment or what.  It was such a LONG night.  He was scared, and upset and just wanted me to hold him.  He just kept saying, "I want to go home, Mommy", and I didn't know what to say because I had no idea what the doctor was going to say about this.  And so we spent the whole night, just the two of us, snuggling in his little hospital crib with him whimpering off and on.  And I had a lot of time to just lay there and think.  TOO much time to lay there and think, because as I sat there in the dark and quiet room, the old pain of coping with Caleb's heart crept back in.

I thought about how we were missing Easter weekend entirely.  How Lucy wasn't going to get to wear her cute little First Easter dress, and we weren't going to be able to go to church or hunt eggs or any of it.  And that old feeling of being robbed came rushing back, that feeling that other people are out there, living their carefree lives, waking up and taking pictures of their families all dressed up, kids eating their Easter candy and enjoying a gorgeous, sunny weekend.  And we are in a hospital room.  We are stuck in this hospital room, yes, but more than that, we are stuck with this life of having a "sick" child.  I tried to sleep, to push these feelings away, but I couldn't.  I just laid there in the dark, all night long and well into the next day, as Caleb just wanted to sleep and keep the lights off. 

The transplant team, when we called them in the morning, were actually not concerned about Caleb's symptoms.  Turns out, the treatment can make people sick, and more susceptible to viruses.  They finished the treatment and Caleb seemed to feel better by the afternoon.  We were discharged around 5:30 pm.  On the way home, I asked Caleb what he wanted to do when we got home, and he said he just wanted to take a bath.  So he did, and went to bed.  It was so good to see Jonah and Lucy, I had missed them so much even though it had only been a day since I'd seen them.  Hospital time is just so much slower than regular time.  Poor Daniel was still sick and spent the evening in bed, and it may have been the most exhausted I've ever been, coming back from that hospital stay, on no sleep, jumping right into being a mom of three needy kiddos.  But we survived, and by Monday, everyone was feeling much better.

Now we go back on Tuesday for blood work, to see if the treatment did what the doctor hoped it would.  The team was confident that it was effective, and that will be that.  I haven't been worried, I trust them and assume the next bit of news will be a good report.  Still, my bubble was burst a little, and this experience brought up a lot of old feelings that I had just not had in months.  It's like coming down off a high and having to face something I would rather pretend isn't there.  But you know what, now that I've had a few days to process this, I don't think it was entirely bad.  Of course, we all want to avoid thinking about painful things, and we want our lives to be happy and easy.  But that isn't real life.  There is a lot of hurt in this world, and I don't want to close my eyes and pretend it's not there.  I want to embrace this life, all the pain and all the joy right next to each other, with my eyes wide open.  This recent hospital stay was like a shock to my system, but a good shock, because I feel like this season of my life, these six months of resting and recovering, is coming to an end.  It's time to start listening to God, and making myself available to Him for stuff OUTSIDE of this house.  I have been through a crazy journey in the last couple years that has given me wisdom and strength that needs to be shared.  For the last six months, we have hunkered down, focused on healing and adjusting to our new normal.  Now, I feel like God is saying, "Alright, now it's time for more new things."  I don't know what that means at all, but I know that I am ready to listen to what He wants me to do with my time and energy.  

I'm listening, Lord.  My heart is sensitive to you, to your leading.  I am ready to see what it is you've been preparing me for all this time, through all this suffering.  I know that you have lots of purpose for the things you've brought me through, and I'm open to wherever you would lead me.

The happy haps

As I sat down to write my first blog post in a couple months, I thought, "What is there to update about?  Things seem like they have been pretty uneventful..."  That is, until I started looking at some pictures.  Then I realized I need to catch you up!  Here's a highlight reel from the last few months...

On January 27, Caleb turned three.  His birthday was celebrated with Batman cupcakes and more than a few happy tears from Mommy... you can't blame me, considering that there was a time I didn't know if Caleb would ever have another birthday.

In February, our family was invited to a New Castle boys varsity basketball game because the team and coach wanted to honor Caleb with an award, on behalf of the community, for outstanding courage and strength.  Caleb got to ham it up as the crowd cheered for him.

In March, our family was invited back to the Ronald McDonald House for an event for their board of directors and donors.  The event featured Caleb's story and Dr. Jeff Sperring, the President and CEO of Riley was a guest speaker, along with yours truly.  We got to stay all night in our old apartment and my boys thought it was a vacation.  The RMH staff treated us like we were coming home for a reunion and it was great to see them all again, and great to stay in what still feels like our second home.  We had a special surprise when Dr. Mark Rodefeld, the surgeon who performed Caleb's heart transplant, came to the event.  It was really special to see him again, and I know it was special to him to hold Caleb in his arms, knowing the part he played in Caleb's amazing story.

On March 27, Caleb was officially SIX months post-transplant.  As that date approached, and flu season ended, and Caleb continued to do so incredibly well, we began to let him venture out in the world more.  We have just gone back to church and Caleb joined his little Puggles class, which he absolutely loves.  The first time I dropped him off at his class, I couldn't believe we'd arrived at a point in our life where he could join in with what other kids were doing.  We also have taken him to the Children's Museum, both the one in Indy and the one in Muncie.  Watching him run and play and simply wander around with wide eyes will never get old to me... I hope he always approaches new experiences with the kind of enthusiasm he has nowadays.

And mostly we have just been enjoying normal life.  Day after day of just being a family, together, in our home.  Healthy... happy.  As winter is finally giving way to spring, our life isn't starting to feel routine.  Instead, there is a growing excitement for the amazing experiences that are ahead.  And by "amazing", I mean things like playing in the dirt and going to the park, watching fireworks from someplace other than a hospital rooftop, and anticipating our first vacation as a family of 5 (the beach in May... YAY!).  

These six months since Caleb got a heart transplant and we have returned home have been a very quiet season for me.  And I've been trying to enjoy and savor it, even when it has seemed boring at times.  I'm aware that another new season is about to begin.  Our seclusion is over and God is stirring in my heart that new things are around the corner.  I've been invited to speak at a few events (mostly churches, although speaking at the RMH event was a blast) in the next couple months, and I have discovered a growing passion to share my heart with others.  I hope more opportunities to do that come my way.

So much to look forward to... I wish time would slow down.  My babies are getting too big too fast.  Jonah has his first loose tooth and starts kindergarden this fall.  Caleb is in the "I'll do it myself!" phase and not only wants to dress himself, but has strong opinions about which super hero jammies he's putting on each night.  Then there's my baby girl... Lucy rolled over today for the first time.  Sigh.  All this stuff, this normal life stuff, this is what I waited for all those months.  I still can't believe this is my life.

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.  

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.