I don’t know how to write about this.  I didn’t think I would try, so soon, but it seems I am avoiding coming face-to-face with my feelings surrounding it, and writing has always been a way to feel.

I’m scared.

I am scared of the life Kiran will have.  I am scared I am not equipped to be his caregiver.  I am scared that all the therapies and all the prayers and all the hours of work and heart and sweat and tears will not pay off in the way I hoped they would.

We learned more on Thursday, when we were in Iowa City meeting with Kiran’s genetic ophthalmologist.

My fears – my motherly intuition – I am sad to say – were spot on.  I mentioned his brain scan was in line with his global developmental delays.  This is because his brain is small.  His cerebrum, his cerebellum, his brainstem – his entire brain – is smaller than it should be.  It is all there – thank goodness – but it doesn’t fill up his “cranial cavity” the way it should.  There are spaces and fluid where brain should be.

This is an anatomical fact.  We do not know, at this time, without further diagnoses, how this will translate into life function.  We do know he is globally delayed – we do know he is currently making progress in almost every area, slowly.  We don’t know how much progress he will make.  We were told he is not likely to ever have a normal development – he will not ever catch up with his peers.  Some level of permanent disability – permanent difference – permanent challenge – permanent….

His entire brain is small.  Everything is affected.  Global developmental delays.

We have an answer, yet we don’t really have an answer.  We know more, but we still know so little.

And I am scared.

Because so many of my fears I could brush aside and talk myself out of before knowing this.

What if he never walks?  Beyond that, what if he never masters any sort of independent mobility?

What if he never talks?  What if I never, ever get to hear my little boy say “Mama, I love you”?

Oh, there.  I found my feelings.

 

Oh.  Man.  Kiran is going to LOVE preschool!  We were able to visit this morning for about 45 minutes and be involved in some free play time, their morning greeting, and story time.  It was a fantastic experience.

There are four teachers (one head teacher and three assistants) with a class of about 16 students.  In this year’s class, there was another heart warrior we know, so it was really fun to see him!  Another little boy came right up to Kiran when we first went over to the rug to check out the toys and said hi with no prompting from any of the grown-ups.  This warmed my heart so much.

The head teacher and the assistant who interacted the most with Kiran (the one who has been there the longest – also the one the head teacher said she would put with Kiran initially since she is the most experienced) were both amazing.  Seeing the way they included Kiran and were able to accommodate him very easily in the routine helped put my mind at ease.

We also briefly met the occupational therapist, speech-language pathologist, principal, and school nurse.  These were more whirlwindy greetings, but I got a good feeling about everyone we came in contact with this morning.

One very meant-to-be type moment occurred during the morning greeting.  They have a cute little rhythmic thing they do with hand motions – I couldn’t remember if I tried – but then say hello to each person by name (kids and adults both).  And they do this in the different languages of all the diverse students in both classes (morning and afternoon).  Today just so happened to be hello in gujarati – Arif’s family’s language – apparently there is a child in the afternoon class whose family speaks this language as well.  The odds of this … let’s put it this way … before meeting Arif, I had never even heard of the language.  So the fact that our little neighborhood preschool in West Des Moines, Iowa happens to have a family who speaks it and today happened to be the day to use that greeting….

Yeah.  It was all around a good experience today.  Kiran loved watching all of the kids, interacting with the adults, trying to mouth the toys (They have a “yuck bucket” that I think Kiran will make sure is full every day with toys that have been in his mouth.), and listening to story time.

Now.  I did tear up at one point, and I am surprised I was able to actually hold the tears in my eyeballs – not one made it down my face.  This will not be the case when he actually starts preschool.  I can absolutely guarantee it.  But seeing how happy and excited he was (He told us ALL ABOUT IT all the way home!) and seeing how he didn’t even bother trying to find Arif or me when we were sitting behind him out of his line of vision….

He will love it.  And it seems, he will be well cared for.  I am still glad it is months away, but today was helpful.

As I sat down, preparing myself to write this entry, this song by Tenth Avenue North popped into my head:

“I’m tired. I’m worn. My heart is heavy. From the work it takes to keep on breathing.”

I had three hours today of stress and panic and confusion. I had three hours of breaking. Of craving control where there was none to be had.

Somebody screwed up. Somebody posted MRI results on Kiran’s discharge papers on mychart sometime this morning, before the doctor had called us – before the doctor had even seen the results herself. Arif saw them first and texted me.

And then I read terrifying words. Some that still terrify me. Some that no longer do. But when you read medical words that you understand but not fully … and you certainly don’t understand the true-to-life meaning of those words …. Let’s just say this: Someone screwed up big time, putting those results out there for us to read on our own, without doctoral guidance.

Kiran’s genetic ophthalmologist got back to us pretty quickly once she received my panicked email. She apologized all over the place and is going to be sure to find out how that happened.

The good news: Kiran’s pituitary gland is present and normal. This was the big thing we were looking for. Optic nerve hypoplasia (small or underdeveloped optic nerve), can often coincide with pituitary gland malformations or issues. Since we now know his is fully there and normal, we may even get to say goodbye to his endocrinologist, taking away one of many specialists we see regularly for him.

The other news: We still have more questions than we have answers. His brain is not normal. A lot of “atrophy” and “hypoplasia” was intermingled in the medical terminology. Again, this means parts of his brain are underdeveloped or small. We didn’t get a lot out of his genetic ophthalmologist, other than (and also confirmed when she talked to his geneticist), this information is in line with his known global developmental delays.

That’s really all I can say at this point, with any accuracy. Dr. Google and I had some good sessions this afternoon, but I had to stop when I got in too deep. I know more and can induce more, but until we get good information from our team, I am choosing not to share more.

Next step will be our appointment with Kiran’s geneticist. We have one already on the books for June 12th and that may be the soonest we can see her. She will take a look at everything we know, along with the genetic deletion we know he has, and see if we can finally piece together what is going on. If she feels the genetic piece can explain it all, we may finally have a syndrome diagnosis.

If not, Kiran will probably be referred onto a genetic pediatric neurologist.

It is hard living inside this space of knowing-but-not-really. It was incredibly hard learning new information the way we did this afternoon. I am so glad Dr D is going to get to the bottom of it and make sure no other parent will have to go through what Arif and I went through this afternoon.

I’m tired. I’m worn. My heart is heavy.

We are already on our way home! We were called back to the post-anesthesia room just before 1:00. Kiran came into the room, before we were called back, with his eyes already starting to open.

He was extubated in OR and had no oxygen needs once in recovery room. We were able to give him 2 Oz of pedialyte around 1:20 and 2 Oz of purée (both given thru tube) around 1:40. He kept both down like a champ.

So – home we go! If we don’t hear from Dr Drack by Monday with the results, I will call Tuesday morning.

So thankful Kiran is such a stud with sedation. Strong dude.

Now. More waiting.

First of all, our nurses rocked today! Easiest and best (FIRST TRY!) IV placement Kiran has ever had! It makes such a difference in the overall experience when it doesn’t start in a traumatic way.

The anesthesia team took Kiran back a few moments ago. I felt very comfortable and confident in all our team members. Their plan was to intubate Kiran once he is under. I hadn’t really considered this being a possibility, but he said with Kiran’s excess drooling/risk of aspiration, heart history, and developmental delays, it would be important to do so. Makes complete sense.

Kiran has never had any issues with anesthesia, nor has he had any issues with being extubated in the OR. So, we are not anticipating any surprises this morning.

The scan should take about 50 minutes, making this next hour a long one.

Nobody ever dreams about imperfection or difficulty. Nobody ever imagines a life full of challenges and grief.

I am not the only one living an unexpected life. We all are.

We all live inside the life we choose – but so much of life is also handed to us.

I am thankful for what life handed me. I would have never, in a million years, chosen Kiran. Hear me out: I would have never dreamed of a medically fragile child with special needs. I would have never imagined a child with a long list of diagnoses.

I’m a broken record sometimes. But this is not a life I would have chosen.

I am thankful this life was gifted to me. I am thankful Kiran is my son. I am thankful he is sitting next to me, in the backseat, hollering and clapping joyfully, all the way to Iowa City.

I have been keeping myself ridiculously busy today.  I have found several unimportant, non-time-sensitive tasks to keep every moment occupied.  It is because, today, I want an idle mind.  If my hands do not keep busy (and thus keep my mind occupied with the minutiae of everyday life), I will have too much time to think.

And, in case this hasn’t become apparent yet: When I think, I worry.

Wednesday is a day I have been waiting for, for months now.  It is finally time.  Now that it is here, I don’t want it to be.  I’m not ready, even though I have been ready for months.

That is always the way, isn’t it?

Kiran will be getting his brain MRI on Wednesday.  It is my understanding we will not receive any results right away (though a part of me is simultaneously hoping/not hoping this won’t be the case).  We *should* have results by the end of the week, via a phone call from Kiran’s genetic ophthalmologist.

I would appreciate prayers at 10 am on Wednesday.  He will be going under anesthesia for this.  It is always hard on me.

 

Today, I am thankful for slow mornings.  Mornings when we don’t have to hurry to be anywhere at any specific time.  We have already fallen into a rhythm I enjoy.

We wake up at our house at 6 am.  Kiran sometimes forgets, but he is content (enough) to vocalize in his bed until 6 am, when we wake up.  Brace comes off, diaper is changed, and we do joint compressions (an OT activity to promote body awareness) to “wake up his body”.  We come upstairs, and we practice standing at Papa’s chair with toys.  We practice hands and knees.  Standing, he got up to two minutes and forty-five seconds this morning.  Yesterday afternoon, when I wasn’t timing him, he stood for a solid 10-15 minutes.  Hands and knees, he did 46 seconds this morning.  It’s far more than he has ever consistently done.

He is getting SO strong!

We have breakfast.  I remember to do the tongue swiping (a feeding activity to promote tongue movement) before we start.  He eats.  I eat.  And then, we go for a wagon ride.  This is my favorite part, I think.  Except for yesterday, when the torrential downpour at that time of morning prevented us from doing so, we have gone out every morning this week.  He is still in his pajamas – as am I – and I carry my coffee cup with me.  We walk the neighborhood for maybe ten minutes.  We listen to the birds.  Enjoy the fresh air.  Isn’t it great that spring has finally sprung in Iowa?

He has some independent play time when we come back inside.  I handle dishes and breakfast cleanup, laundry, whatever I need to handle, while he works on his visual attention skills and toy play (OT and speech activities, really PT too – sitting skills).  We read books and play together.

I feel like we incorporate his therapy homework in a slightly structured but mostly really fluid way.  It makes me feel both accomplished and like Kiran gets to be a kid.

I like slow mornings.  I like not being rushed.  I like enjoying this time with my son.  It is not lost on me that our lives are about to change, yet again – the fall brings preschool and more structure to an already pretty structured life (with therapy appts and medical appts).  There will be busy days this summer.  Mondays and Thursdays are therapy days; we have some medical appts sprinkled throughout – one week from today, for instance, is his brain MRI.  But the days that are ours – the slow, non-rushed, sweet sweet days that are ours – those will be my favorite.  And I plan to make the most of each and every one.

We had a long afternoon yesterday at the Center for Disabilities and Development. Kiran participated in what is called the Neurodevelopmental Clinic. Basically, we saw, in a staggered fashion, a specialized pediatrician, a physical therapist, an occupational therapist, and a speech language pathologist. We had new sets of eyes take a look at where he is and express concerns, give recommendations and just give us a fresh perspective.

It was a long afternoon. Overall, I would say it was worth it. We have some good things to take back to our team at home who know Kiran best. Arif and I ultimately decided the experience was valuable enough to repeat annually (unless concerns arise or something stumps us/our regular team) but not something we want to do on their proposed schedule (every six months).

The biggest thing that came from this was the pediatrician recommended a cognitive evaluation for Kiran.

I don’t talk about this piece often, because this mama’s heart struggles with this possible reality more than any other. When Kiran was a day old, I remember looking at him and just – knowing – how do you say this about your child the right way? Just knowing that he wasn’t all there. I just sensed that, intellectually, something was going on.

Throughout the last couple of years, I have been able to push that thinking aside. For awhile, it was easy to explain away his global delays because of his heart. But then, though progress has always been forward-moving, it has been so slow. And as I have watched Kiran grow more and more and gotten to know him better and better, it has become more apparent to me that there has to be something else going on we don’t know about yet.

I am surprised it took someone new, meeting Kiran for the first time, to recommend this. I am surprised his regular team hasn’t suggested it. However, I did briefly look into cognitive evaluations for young children, and it looks like he is right at the age they are able to start testing this, so maybe the recommendation would have come. Perhaps the MRI results would have led us there. Perhaps I wasn’t ready to really face it all until now.

Kiran is Kiran. He is doing his own thing. He is on his own schedule. He is his own dude. And he is one of the coolest, sweetest human beings I know. As a friend of mine said – He just oozes personality.

So whatever these cognitive things show: the brain MRI in May and now the evaluation in August – they just help us understand better who Kiran is. They don’t change him. He already IS.

But boy, do they change me.