I had a really great time with Kiran yesterday.  We went to the science center and the state historical museum, both firsts for us.  We were out and about, watching other kids and other people, checking out interesting exhibits.  I enjoyed it, and I think, for the most part, Kiran did too.

At the historical museum, I overheard a mother and her son, also around Kiran’s age, have a conversation about lunch.  She was doing that thing I always advised parents to do at the terrible two stage: offering choices.  And the child was choosing: Do you want to go get something to eat while we are out or go home to eat? Home.  Do you want peanut butter and jelly or grilled cheese? Peanut butter and jelly.

And it took me back to my nanny days.  It took me back to those sweet moments of letting the two year olds in my care take ownership of these small bits of their lives.  And it brought back that familiar sadness.

These are the conversations I thought I would be having with Kiran at this age.  These are the things I thought I would be doing with him all the time – and we are doing these things – but there is still so much he can’t interact with at these exhibits.

It’s hard.

But alongside that, I haven’t been able to stop thinking about this: I have no idea how to parent Kiran.  I have so much experience and so many wonderful ideas that I’ve been able to put into practice as a nanny, but so far, very few of them apply.  I’m flying by the seat of my pants.  I am having to improvise everything I know, change tactics, figure things out differently, and certainly challenge and modify my own expectations.

Everyone always told me it would be different when I had my own kids.  I knew in my heart of hearts it wouldn’t be – and actually, truth be told, in many ways, it’s not – the important things have remained important to me: schedules, sleep, consistency.  But everyone was right, anyway, just not in the way they meant to be.

 

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!

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.

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.

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.

I appreciate the Department of Human Services.  I do.  They do a lot of hard work.  I appreciate the services Kiran has been able to get because of them – medicaid for kids with special needs practically his whole life – and now, the waiver for health and disability.

But man, I’ve had a frustrating week with them!  Also – is it a requirement that you either have to speak in monotone or have a mean-sounding voice to work there?  Genuinely curious.

Nobody explained to me that Kiran would transfer his medicaid from what he has had to the waiver.  So when I got the letter saying he had gotten the spot on the waiver and at the same time, got a letter that said his medicaid would expire February 1st, I was concerned.  I didn’t know how it worked, if coverage would change, if there would be a gap in coverage, if I needed to give his providers new information….

So I called my worker, the number on the waiver form, for answers.  I left her a message last week Monday.  And then Friday.  And then again this morning.  Yesterday, I finally tried the number on the other form, and it didn’t go through.  This morning, I tried again – and got a person!  Of course, they couldn’t help me but sent my info to a worker.  I promptly missed that callback (of course) and called again, only to have the call disconnected.

At this point, I was done.  Frustrated.  Practically in tears.  Worried.  One of those moments where the overwhelm just paralyzes you.

Then I got over it and called again.  Same thing.  Left all my information for them to have a worker call me…and then just sat and stared at my phone until I got the callback….

Finally!  Peace of mind!  There will not be a break in coverage; if the number had changed, I would have gotten a new card; everything should go smoothly!

I still haven’t heard from my waiver worker, nor have I had a call from a case manager to actually set up waiver services.  But at least I know his medical coverage is intact.

 

I don’t write often about the spiritual aspect of my journey with Kiran.  Mostly, I see my coming back to faith as a very fragile thing, and it looks nothing like the faith I grew up having.  But today’s church service hit me really hard, and I found myself (once again) sitting there, tears streaming down my face.

The scripture reading was about Abraham’s faith in being willing to sacrifice his only son, Isaac, to God.  First of all, how I feel hearing that story is very different now that I understand a parent’s love for their child.  I cannot imagine being asked to harm Kiran – so sacrifice him, as a lamb on an altar?  Remember, my faith is a fragile thing.  It is certainly not strong enough to withstand such a request.

But immediately, I am thinking: Wow.  If someone can have the kind of faith that they would sacrifice their only son, in obedience and with trust, can I lay my worries and fears about Kiran down?

And of course, the pastor continued, speaking with such passion and conviction, about God always showing up, always keeping His promises, always working in the stuff of our lives, even if it may not be what we thought it should be.

I think about all the unknowns of Kiran’s life.  I think about my deepest fears: What if he never talks?  Never eats fully by mouth?  Never walks?  What if the MRI reveals something far worse than I have even considered?

And when I think about those things – when I acknowledge those worries – I don’t feel like I could possibly have the strength to be who I need to be for him.  But then I look back at all the hard we have made it through.  And I see the people, the kindnesses, the victories that have come at just the right moments.

And I do.  I see God’s hand in it.  I have felt the prayers, even as I haven’t been able to utter my own.  (I still don’t pray in any conventional way; I have found my prayers come out in song.)  The truth is, I came back to my faith at a low point on this journey.  I needed more than what I had in my life, to carry me through the days.

And I am learning, little by little, to lay my worries down.  To trust.  It has never been something that comes naturally or easily to me.  I like control.  I have great skepticism.  I crave concrete answers.  But this journey we are on?  It forces me to let go.

 

 

 

I have been thinking about this little girl a lot since Kiran and I ran into her at the park yesterday.  She was probably right around his age, though she was running around, asking her mom to help her on the big girl swing, climbing stairs, going down the slide…you know, being two.

First of all, like most social scenarios where a lot of kids are present, it struck me.  I always get emotional when I see kids around Kiran’s age, doing all the things I anticipated my own two year old would be doing.  That piece of grief never completely dissipates, no matter how much I have accepted the reality of our journey.  Also, I always feel like I have to say (mama guilt at its finest) I LOVE KIRAN and wouldn’t change him for anything.  I wouldn’t want any other child.  No way, no how.  But that doesn’t change how it hits me, seeing other kids his age – sometimes, I’m fine; sometimes, I want to cry.

Yesterday was interesting, though.  This little girl was interested in Kiran.  When we were going down the slide, she kept wanting a turn right after – even though it was one of those double slides, and she could have easily gone down the other side.  She kept doing that impatient two year old thing, standing at the top of the slide and yelling “ExCUSE ME!!!” (to which, yes, her mom apologized, and told her to go down the other side)…and when we were practicing standing, she came over and stood, just looking at Kiran.  I tried to get Kiran to wave and say hi to his friend … otherwise, I just let them size each other up.  I could see the little wheels in her head turning.

Kids are really smart.  I honestly feel she knew Kiran was about her age, and she knew that he was different.  She was trying to figure it all out.  In that instance, I realized how clueless I am when it comes to navigating this new part of our journey.  I guess I will learn as I go, because I am sure we will find ourselves in more and more situations like this one.

There will never be an end to my learning and growing, being Kiran’s mama.

Having the background I have – both being educated in child development and having experience working with kids as a nanny for many years – I have always understood that play is a child’s work.  For most children, play is naturally a learning process.  As a nanny, I would often create play situations that would help the child meet the next developmental goals – for instance, repetitive up-down on a see-saw or taking color walks where we look for things of a certain color.

With Kiran, it seems I can never quite let this part of my brain rest.  I noticed it again today when we were at the park.  As I’m pushing him in the swing, I’m thinking – oh, I should push him side to side for awhile to help build his vestibular system (this is that inner ear/balance system – we work on this in PT frequently).  We go down the slide and at the bottom, every time, I have him scoot to the edge and stand up into me from a sitting position.  We practiced standing on the wood chips with his hands pressed up against the rock wall – both to give him practice standing on a different surface and to give him that input in his hands (the same type he would get if he were on hands and knees).  And then we stood on the concrete at part of the play structure that was the right height for standing, just to get some more standing practice in.

I struggle to turn it off.  I have to intentionally focus on turning that part of my brain off so that I can sometimes just enjoy play time with Kiran.

Honestly, I do it best when I’m reading to him or singing to him.  Although, I know both inherently help him with speech….

See what I mean?