Illness and Cage

We had kinda just been trucking along with life….

and then Kiran had major explosive diaper blowouts two times in a row on Thursday evening (the last being on the way to my birthday dinner – needless to say, plans changed a bit that night).  He continued to have diarrhea and be pretty lethargic throughout the weekend.  We did a lot of bone broth and pedialyte, banana puree and applesauce – and a LOT of snuggling.

I am fairly certain we read every single book we own.  This is only a SLIGHT exaggeration.  We also had more screen time than I think he has ever had in his life.  We watched the Trolls movie on Friday night and Boss Baby on Saturday night.  I recommend them both, whether or not you have a tiny human to watch them with you.

He seemed to be on the mend Sunday afternoon.  I would cautiously say he is all better by now, though his energy level is still (understandably) lower than normal.  We were back to our regular eating routine yesterday, and he is in good spirits (not that those ever left him).

I am glad we got the illness out of the way when we did, because we started our second session of the cage physical therapy intensive today!  Today was just assessment day, and we saw a pretty good portion of his skills and assist levels were maintained since ending the last session.  We are hopeful for more strength building and skills progress – can’t wait to see what the tough little guy will accomplish this time!

Questions, Answered

I am sure my earlier post has brought about some questions for those following our story.

Questions like: When will Kiran get a wheelchair?  Does this mean he will never walk?  And most importantly: Will you be turning it into The Batmobile so he can go as a super awesome Batman for Halloween next year?

We will be starting the process in early April.  Insurance timing varies.  We may get it by summer or it may be fall.  The hope is he will get it in time for preschool, which will either start at the beginning of the school year in the fall or when he turns 3 in October.

This does NOT mean he will never walk.  In fact, the wheelchair will give him good support and reserve his energy for the times he is specifically working on his PT goals of standing and (eventually, down the line) walking.  At this point, everyone feels the wheelchair is a temporary mobility device for Kiran.  We will continue to work, taking his lead, on his PT goals.

And yes.  I really hope so.  If anyone wants to help me figure out how to make his wheelchair transform into The Batmobile, I’d appreciate it.

Wheelchair

I have been holding this one close to the chest for about a week now, but, as is always the case eventually, the time has come for me to release the news and my feelings along with it.

Remember in my blog entry two weeks ago, when I so nonchalantly mentioned (when writing about the waiver spot Kiran finally got!) that he might possibly EVENTUALLY need a medical stroller or wheelchair?  Didn’t I sound so…stable around that idea?

That is because, in my mind, it was down the road.  In my mind, I’m not even sure when the time was going to come, but it certainly wasn’t now.  And then, as if my blog somehow released something into the universe, last week….

Kiran’s physical therapist said it is time to start considering ordering a wheelchair for him.

Do you know those moments in life that just sorta knock the wind out of you?  They pierce your heart in a way that can’t really be explained, because you’re feeling so many things at once?  Fear, uncertainty, heartache, shock….

I’ve had a week to wrap my head around it.  We have had positive conversations with both physical therapists now about what a wheelchair will do for Kiran – and yeah, it’s time.  They are right.

I don’t think I know yet how to express my feelings around it.  My feelings are mine to handle, and ultimately, they don’t matter.  We do what is best for Kiran.  Period.  Exclamation point!

That may be all I have to give today.  Still swallowing the pill.

Coping

I have more thoughts on this than what I covered on my daily facebook post.  It is a topic that has been nudging the back of my mind since February began.

You see, I really thought this heart journey would be different.

I received Kiran’s heart diagnosis in utero, at 22 weeks, so I had time to prepare myself for what lie ahead.  And, since we moved to Iowa just two weeks later, I was no longer working, so I had even more time.  And then, during the last trimester, I was diagnosed with gestational diabetes, so as I carefully manufactured perfectly carbed meals and took walks around the park several times a day, I had even more time.

Too much time, maybe, to think about what this heart journey might be.

The only preparation I really knew to do was to prepare myself to lose him.  Loss is something I have experience with, so I had at least some understanding as to how I should prepare for that.  As I walked countless laps those last few months of my pregnancy, listening to uplifting music, I convinced myself that – somehow – I would survive losing my son.

I can only imagine how this sounds to those of you who have never been in this position.  Pessimistic.  Perhaps even a bit cruel.  Heartbreaking for sure.  But I had to do something with all of this time, had to create some illusion of control for what might be coming my way.

It’s all I really knew to do.

I had no way to truly prepare for what LIVING with a heart warrior would be like.  I had nothing to compare it to.  And, although I found a wonderful support group with amazing heart families, everyone’s story was SO different.  There was no way of knowing what path we would land on.  So I just prepared for the path I knew, the one I understood at least a bit.

Imagine the joy – and fear – and shock – and burst of love – that I have felt since then.

There really is no preparing for this heart life.  And it changes all the time.  But it’s not really any different than anything else in life.  Nothing prepares you for it.  You just have to keep diving in.

I wish I could go back to that pregnant, expectant, terrified, heartbroken mama, as she walks around the park.  I would say to her: Stop preparing for what you know.  Stop preparing for the worst case.  Prepare for LIFE.  Prepare for a LOVE you can’t even fully fathom right now.

Prepare for life.  And live it every day.