The wheelchair assessment on Wednesday morning really wasn’t as overwhelming – as far as decision-making and information gathering goes – as I thought it would be.  Due to the knowledge of Kiran’s two great physical therapists and our willingness to trust their professional opinions, most of the option decisions were made for us.  The hardest part was picking out the colors!

Ever since the wheelchair discussion started, I have been paying more attention to how easy (and how difficult) places are from an accessibility standpoint.  I have turned over things in my mind like a handicapped placard for our vehicles.

But coming out of that meeting, with a tangible picture in my head of his wheelchair, I have more questions.  Anyone with any wheelchair experience, feel free to help me out.

Upon leaving the meeting, I had to use the restroom, and a thought occurred to me that never has before: What are the proper societal expectations for a person in a wheelchair in a restroom line?  For instance, if I’m at the zoo and there is a long line for the bathroom – and someone comes out of the handicapped stall, do I cut the line since we need to use that stall?  Or am I to wait in line for our turn?

Seriously – anybody with zero wheelchair experience – has this thought ever even occurred to you?  I mean, I have no problem going Mama Bear (respectfully and politely, of course) for what my son needs, but I certainly don’t want to cut the line if that isn’t the proper, socially acceptable thing to do.

Also, I am someone who likes to do everything I can online, especially if my other option is having to call and – heaven forbid – talk to someone on the phone.  So, for events like concerts or shows or sports games, I like to buy my tickets online.  Is there generally a way to do that if you need a wheelchair-accessible seat option?  This is forward-thinking – so far, I haven’t taken to Kiran to these types of events – but it is something I will want to do in the near future.  Will I have to call every time?

I am sure I will have a million more questions as we get closer – and even more once we get and start using the wheelchair.

I just feel like we are at a crossroads again.  I felt this way pre-surgery too.  Six months from now, life is just going to look very different again.  And I have no idea what that different will really look like; I have very little idea what to expect.  Wheelchair.  Preschool.  Life.

But hey – we did request light-up wheels for the wheelchair – so at least I know he will be riding in style.

I learned awhile ago how good it feels to be recognized.  To frequent someplace enough – and matter enough to those who are there – to be paid attention to.  Granted, I know that it is not me they pay attention to – it’s my cute little sidekick with the contagious smile.

Some friends of mine and I (and Kiran, of course) have made a somewhat regular lunch date at an easy and close location to my home.  It varies how often we go here, but in Nov/Dec, it was once a week (and my waistline at the time showed it!)

Anyway – today, we had lunch.  And both women working recognized us; our server was someone we have had frequently in the past.  We were earlier than normal, so we were the only ones in the restaurant.  For the first time ever, the server asked some questions about Kiran.  It started at one point asking about his new glasses.  Then, while waiting for our food to get prepared, she began asking if he could eat anything orally.  This was followed by a lot of other questions, and she got an incomplete but highlighted health history.  She made the statement that even though she only sees him when he’s in for lunch, she has definitely noticed improvement with him!

That was such a cool thing to hear!  And for someone to pay attention closely enough to be able to see a change and growth and increased strength…it touched my heart that she took the time to ask questions and talk to me about Kiran.  He continues to be my most favorite topic in all the world!

I also saw huge improvement in how well he sits up in the restaurant high chairs (which don’t give very good support).  I could definitely see how this cage session has increased his core strength by how long and how well he supported himself.

It was just some good in an otherwise emotionally taxing day.

I have been meaning to write this post since Friday, and since there will be more things to process coming up soon, I wanted to take the time to update today!

Kiran received his glasses on Friday afternoon.  The transition is going better than I anticipated – we started with a 45 minute wear and then later in the evening, an hour with them on.  Saturday, he had 3 wears of at least an hour each, and Sunday he had about 3 wears, one being closer to 2 hours!  He wore them during speech and OT yesterday afternoon and did a pretty good job with them during his intensive PT session this morning.  His dad even trusted him to wear them in the car on the way to PT this morning (something I haven’t done yet, due to not wanting him to chew on them!), and I guess he kept them on the whole way!

He still dislikes them being put on his face, and there are plenty of times he takes them off and throws them to the floor in one sweeping motion.  But overall, he is getting used to them really well.  I haven’t seen him crossing his eyes near as much (only once in five days), and it does seem he is starting to get that he sees better with them on.  It’s an exciting transition for sure!

And he’s just so darn handsome in them.  I can’t believe how much more grown up they make him look!

Kiran saw the genetic ophthalmologist today.  It was an interesting appointment.

Doctors often talk quickly or brush through certain statements or topics – One of the things I have gotten very good at is asking clarification questions – really just asking ANY and ALL questions, unveiling my stupidity be damned.

Dr. D. today brushed past this statement in a long monologue: Kiran has a pretty large deletion.  This is talking about the genetic deletion we have known about since his initial chromosomal microarray at birth.  Since no one had ever expressed anything to us about the size of his deletion, I backed her up and asked for more information.

She explained the size of the deletion really doesn’t matter.  There are (and bear with me here; genetics is not my strong suit) certain spots in our sequencing where there could be a small deletion but because there are many genes in that area, a lot of them are affected.  In Kiran’s case, there is only one gene known affected by his (apparently large) deletion.

And again, we heard this: Kiran’s specific deletion is the first one ever reported.  I asked for further clarification: In the United States? In the world?  The answer: Period.  As far as she knows (and it’s a question we will bring up with our geneticist in June), there has never been another report of this specific deletion.

Again – of course – our unique boy.

She does suspect the deletion does explain some of his diagnoses, but of course, we don’t have any definitive answers on this yet.  We may never.  But that was simply the interesting genetic part of the appointment.

Good news: His pupils continue to dilate FAR better post-op (one year post-op for his eye surgery yesterday!).  His vision is continuing to improve.  Other than watching the small cataract in his right eye (which so far isn’t causing any visual problems), she doesn’t foresee any necessary future surgeries at this time.

We had noted he has an astigmatism at his past eye appointments.  Today, she said he is nearsighted.  She measured his prescription with a magical tool I don’t understand (When I go to the eye doc, it’s that whole “This one or this one” game for 100 years) and determined that all of this information, paired with the intermittent crossing of his eyes, means we should give glasses a go.  Oftentimes, when kids go cross-eyed every so often (and come out of it quickly, as Kiran does), it may be that they are trying to focus their vision.

So.  We ordered glasses for Kiran today.  We will get them in 10-14 days, and we have been instructed to start with one hour a day during a visually stimulating and engaging activity.  This is so he will hopefully keep the glasses on and be able to notice the difference.  It takes about an hour for the brain to register the difference, I guess.  From the one hour a day, we will attempt to increase the time the glasses stay on, as he tolerates.  We already have a follow-up with her scheduled after Kiran’s MRI in May, so we will follow up about how the whole glasses thing is going then, too.

This will definitely be an adventure.  Kiran won’t keep sunglasses on.  I can only hope that if we can power through the first several days and his brain can see and appreciate the difference in vision with the prescription lenses….that maybe this won’t be a constant battle.  Maybe.

But then – he’s one of a kind.  And he definitely has his own mind.

But boy, does he sure look cute in glasses!

I don’t think they are new.  These looks.  They have been poking at the edges of my consciousness for a few months now.  Today, though, I couldn’t ignore them.

Kiran is different.  No one can deny that.  He will be 2 1/2 years old at the end of April.  And he is growing so well, so he physically looks like an almost-2 1/2 year old.  And the people around us, the people orbiting this world-of-difference we live inside, have started to notice.

I took Kiran to library story time this morning.  We sat front and center (it’s the eager student in me).  I helped him stand and participate in the songs and movements that were being done.  He started singing along during some of the songs.

And I noticed the curious looks of the other kids.  Those I have seen before, and they don’t bother me.  Like I have said, kids are way smarter than most adults give them credit for…and I think curiosity of difference is an important stepping stone out of ignorance and into understanding.

But there was one woman…my assumption is she was the grandma of the little boy, likely around Kiran’s age, maybe half a year older…that kept blatantly looking at us.  And it was like I could see the thoughts in her head through the look on her face: She was trying to figure out “what is wrong” with Kiran.  It was like curiosity mixed with something else…disdain?  Maybe not quite.  Fear?  I bet there is some of that, and that makes sense to me (I wasn’t always the mom of a special little boy, after all).  Whatever it was, it rubbed me the wrong way.  I kinda just kept looking back at her and giving her a smile.

From my perspective, I wish it wasn’t so taboo in our society to simply walk up to someone and ask questions.  I welcome ANY chance to talk about Kiran and educate people about CHD and other differences.  It’s the most passionate topic of my entire life.

But I also worry about this next phase of life we are moving quickly into.  Kiran IS different.  And he is now at an age where the differences are far more noticeable than they once were.  Hell, even my sugarist the other day thought he was just over one year old, and why wouldn’t she?  These things hurt my heart, but I understand them.

I know I will learn how to be a different sort of advocate for Kiran, but right now, this whole thing intimidates me.  I just keep reminding myself that hospitals and medical professionals used to intimidate me too, and now I advocate with ease and determination in those settings.

I wish I could blaze an easier path for him to walk down – for us all to walk down beside him – I wish so many things.

But time keeps moving, and things keep changing.  And this fall, this little boy will start preschool.  And I have to help give him the tools – and to give his fellow classmates and their parents the tools – to navigate the path we are on.

We live inside a world of difference.  For a person who has always felt most comfortable being a wallflower…this, too, will grow me.

Yesterday was beautiful!  Kiran and I enjoyed some time at the park in the afternoon.  He did such a good job sitting and going down the slide – he didn’t try to throw himself back once!  We did some more good practice with stand-to-sit at the bottom of the slide every time too – gotta get our physical therapy in!

He really enjoyed sitting and playing with the wind chimes, too.  Music continues to be a big motivator and enjoyment for him, which makes this music-loving mama very happy.

As I was watching all of the other kids running around playing – big and little – a thought occurred to me.  In the day-to-day care of Kiran, I never get a break.  When he is with me, it is hands-on, always.  Most caregivers with kids his age get breaks – the kids play with toys independently or they can take them to the park to run around.  Kiran is still largely learning HOW to play with toys, so he still needs someone to show him and interact with him while doing so.  And he isn’t mobile, so playing at the park is hands on too.

It was just kinda a light bulb moment, one I think most special needs parents get: No WONDER I’m exhausted at the end of the day!

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.