Preschool Drop-off

Day three of preschool.  I am finding preschool drop-off to be the most difficult thing about this entire experience.  I know in the classroom, they are very good at including Kiran and facilitating friendships with his peers.  But *I* don’t know how to do that.  When all the kids are running around and playing tag and doing whatever most preschoolers do….

I am thankful – I do not feel Kiran is aware of his differences.  I don’t think his heart is breaking like mine is.

Even I feel so different.  I was brave the first day of school at pick-up and introduced myself to the two moms who were there first.  I haven’t introduced myself to anyone else yet.  And already, yesterday, I felt so outside the conversations they were having – “Of course she doesn’t like the doctor – you only go to the doctor when you’re sick!”

Yeah.  Our life is so different.

I know this is only our first not-even-full-week of preschool, but I just feel like I am failing at being the mom of a preschooler.  I just have no idea how to navigate this new area of his life.  I feel awkward all the time – I feel so outside.

I am hoping today helps.  It’s their fall party at the end of the day, and his dad and I are both attending.  Hopefully we will meet some other parents.  And hopefully my entire goal with his costume this year – to normalize the wheelchair and make it something fun for his peers – will be met.

I knew this transition would be harder for me than for Kiran.  He seems to be rocking it and loving it, and I am so thankful for that.

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Swallow Study

The swallow study today did not go as anticipated or as we would have hoped.  Kiran showed some silent aspiration with thin liquids and even with larger drinks of nectar thick liquids.

We were advised to go back to nectar thick liquids and only do thin liquids in a therapy setting.

We were really hoping to hear we could do thin liquids safely everywhere now.

We had (we thought) successfully moved to thin liquids at home with Kiran. We were going to start out at preschool with half-nectar thick liquids until he got acclimated and were then hoping to do regular water there too.

So, this feels like two steps back. I keep reminding myself that really, it is simply steps we are taking to keep Kiran safe.

It just changes everything. We believed (as did our feeding therapist who has been working with Kiran for a year and a half) that Kiran would always cough when he was aspirating – and most of the time, he is very successful in clearing his airway.

Silent aspiration is scary. What they saw today was liquid going into the airway with Kiran showing no symptoms. He didn’t cough at all when it happened.

It’s a long road ahead when you keep having to turn back around. We journey, together.

First Day of Preschool!

I had a lot of anxieties leading up to today, but really, I was surprised how well it all went.  I only cried a little – and it wasn’t at dropoff!

I am lucky that Kiran’s early access physical therapist who will continue with him through age 21 is also my good friend.  She was in the classroom with Kiran today and sent a couple pics and nice messages, so we got to see him partway through the day.

His preschool teacher also sent a message midday to let us know everything was going well.  And we got a nice email from the school nurse after the day was over to let us know his first lunch at school, via tube, went well.

He was happy when I picked him up and TIRED.  I will be curious to see how long he naps this afternoon!  His teacher said the day went well.  He had no fussiness or fits (These are few and far between at home, but I am happy to hear that is translating well to the school setting).  She said he was really tired, and they thought he might fall asleep in the swing at recess (He didn’t!).  She said he definitely made a few friends.  She said no one (apparently OT and Speech were both there today, as well – he got to see all his therapists on his first day!) was happy with the seating at snack time but they ordered a cube chair tray since he sits so well in that chair.  Thankfully, we have a cube chair tray, so we will send it along to school on Thursday for them to utilize until theirs arrives.

Makes me feel good to solve a problem.  I’m still relevant!

At pickup was my first interaction with any of the other preschool parents.  I introduced myself to the first two who walked up.  One is the mom of twin boys in Kiran’s class, and she made a point to turn around and have her boys interact with Kiran when we headed toward the car.  That really made my heart happy.

Overall, honestly, it went so well today.  I’m still dragging my feet as far as this being a *permanent* situation, but I will get there.  It is going to be so, so good for Kiran, and honestly, everyone today made his first day really easy on this anxious mama.

Day One, done.  No preschool on Wednesdays.  Back at it Thursday morning, on our way to making this our new normal.

And hey.  Kiran is three.  He is a preschooler.  We made it.  I am so, so, SO thankful we are here, together.

Three Years Old!

Happy Birthday, baby boy.  Yes, you are three, but you will always be my baby boy.

Three years ago today, at this very moment, I was in active labor and scared to death.  I was so scared to bring you into this world.  I knew you were safe in my body; I didn’t have that guarantee once you came out.  So many unknowns were swirling around in my brain.

And three years later, today, at this very moment, I am scared to death.  Because now, in two days’ time, I have to send you out into this world.  I know you are safe – as safe as you can possibly be – when you are in my care.  I can’t control your safety when you are not.

Being a mom is hard.  It is our job to protect and love and keep safe … and it is our job to know that we can only do that so much, for so long.

I can’t believe we are here.  I can’t believe you are three.  I can’t believe you are about to be a preschooler.  I can’t believe you are three feet tall and over thirty-two pounds.  I can’t believe you’ve had three surgeries and three caths and three gazillion doctors’ appointments.  I can’t believe how far you’ve come in your therapies and I can’t wait to see how far school takes you.

You are so good at giving hugs.  They are sweet sometimes, but you have also learned how to manipulate by using your hug power.  Oh, we are getting in the car seat?  I don’t want to; I’m going to hug mom really tight so maybe she won’t make me.  You are a charmer, and you know your own power.

You are getting so good at taking steps while being supported.  I am still in awe every single time, because it took us so long to get here.  I love how your knee-bending is still exaggerated and so purposeful.  I know how much harder your brain and body have to work to do this, so I am just amazed with every step.

You are playing with your voice, and I occasionally hear a word that sounds like “mom”.  You especially like to play with “mmmmmm” “aaaaaaaaa” “mmmmmmm” “aaaaaaaa” over and over again, so I know it’s only a matter of time before “mama” gets put together consistently.  You have started to get more frustrated with not being able to fully communicate, but it is never much of a guessing game to know your moods.  You emote well, little man, like me.

Everything about life with you is special.  It is always a lot, but you are so worth it.  I have so much joy, and my heart is full to bursting.  Being your mama is the most important and best thing I have ever been in my entire life.

You are my favorite human being.  You have my whole heart.  I love you more today than I did three years ago.  And I will love you more tomorrow than I do today.

Happy Birthday, Kiran, my ray of light.  You are truly my sunshine.

IEP

Overwhelming.  Check.  Long.  Check.

But also, not as overwhelming as I thought.  And long because our current team and future team wanted to be sure all our questions were answered, which I appreciate immensely.  We were definitely a part of the discussion today – a valued part – which makes all the difference in the world.

It is so bizarre saying goodbye to two therapists who have been on his team since he was an infant.  And to two others who have been on his team for the last eight months or more.  I am learning how frequent these goodbyes will be.  Sometimes, they are for good reason and due to our decision, but in this case, they kinda just suck.  We have had such a strong, dedicated, and caring team for Kiran for these first three years of his life.

I feel good about the transition to the school-based team, though.  It makes a difference when you can sit around a table with everyone and realize that they all truly seem to have Kiran’s best interests in mind.  I can’t imagine this transition if I wasn’t working with people I felt that way about.

I feel blessed.  There are still some logistics and communications that need to happen with the school nurse regarding g-tube feedings and emergency plans, but other than that, I am about as ready as I will ever be for this.

First IEP meeting of many.  Check.

Mindstream

Today was busy.  Positive busy, but busy.

Driving to Childserve, I heard a song that is currently on the Christian radio station often.  It is about saying goodbye to loved ones with the knowledge we will see them again.

The first line to that song is “Everybody’s dressed in black”

I don’t know if this was just a way to release some of the emotions and stress I have been feeling the past month (or more) or what, but as soon as I heard that line, I started crying.  It took me back to the outfit I was wearing the day my brother died.  I can picture it, clearly.  I never wore that outfit again.  I gave it to Goodwill shortly afterwards.  For me, I just couldn’t imagine ever putting it on again.

Then my mind went to a poem I wrote about that day, a poem that incorporated what I was wearing as a detail that remains vivid for me.

And then I remembered the very first poem I wrote after losing my brother.  I wrote it very soon after, sometime between the day we lost him and the day of the funeral, because it was read at the funeral.

I won’t take the time to locate this poem now, but I believe I titled it “To My Children”.  One of the first things I grieved was the fact my future as-yet-unborn children would never know their uncle.  This is how much I wanted to be a mom, that this is where my mind immediately grieved.

And then, this afternoon, during my drive to Childserve, I imagined what the interactions would be like today, between Aaron and Kiran.  They would have yelling contests, and it would be hard to choose a victor.  They would have loved each other.  It makes my heart burst with joy and pain to think about how much they would have loved each other.  Kiran is so much like Aaron, something I incorporated into that poem seventeen years ago “Be more like your uncle, children.”  I will never have to use that line on Kiran, because his easygoing nature, his acceptance and love of all people, his attention-seeking mannerisms….he has SO MUCH Aaron in him.

I miss my brother today.  It is so strange, sometimes, when the wave of grief comes back to pull you under again.  In the midst of all the busy and all the transition and all the emotions here, now, that I am living … Today, I cried because I miss Aaron.  Because I wish I could witness what I know would have been such a special relationship between my brother and my son.

How a single thought can break my heart while simultaneously making me smile continues to be beyond my grasp of understanding.

I would never trade the joy in order to rid myself of the pain.

It’s a long road ahead, but we journey together.  Missing pieces and all.

Illness

There were things I wanted to write about last week.  I don’t really remember the feelings or thoughts I was having in those specific moments, but the writing didn’t happen.  I was out of commission with a long-lasting bug that was no fun at all.  For three days.  I really, really, really hope the last two weeks are not indicative of this cold/flu season for Kiran and me.  Yikes.

Back in the swing of things today and had to hit the ground running.  Dropped off preschool registration paperwork – finally – it’s been filled out for a couple weeks now, mostly – and only cried on the walk back to the car.

When you have an extensive to-do list because you’ve been in bed for three days, it is easy to push aside the emotions and just keep moving forward.

Kiran has his IEP on Wednesday morning.  It feels overwhelming to me.  We have an amazing early access team that I truly feel have Kiran’s best interests in mind – and, after meeting with the preschool teacher and associates, I truly feel they do as well.  That helps.  I am hoping it will feel very collaborative and accommodating.  Nothing has given me reason to think otherwise.  Still, it’s daunting going into it.

Just keep moving forward.  It’s a long road ahead, but we journey together.

Neurology

Props to the fellow heart mom last night who gave me the expectation to only expect grey from a neurologist. I mean, I knew they didn’t “have a crystal ball”, but I was hoping for … more.

It is hard to not feel like this morning was a waste of time.

This particular neurologist seemed a bit all over the place, so this post will be too.

We did look at brain mri images again, but we really didn’t learn anything new. Everything is small. We all agree it formed that way and wasn’t the result of a stroke or other incident that caused shrinkage (atrophy).  He has partial agenesis of the corpus callosum – it didn’t fully develop. He has cerebral and cerebellar  hypoplasia – both areas of the brain are small. We knew all of this months ago.

Implications are so widespread.

The good: He will walk. It may be forever with the aid of a walker (or gait trainer) but she seemed very sure of this after seeing his supported steps. She even mentioned she could see him riding a special bike someday (but not a bike without training wheels – I told you, all over the place). She feels our best guess for what lies ahead is looking back at how far he’s come. He has been progressing and developing slowly and steadily – with occasional exciting spurts – since heart surgery. She feels he will continue to progress.

Also good: One and done. At this time, we do not need to add a neurologist to our team.

And more good: Apparently, a lot of children with brain malformations do not sleep well and are “morose” … but Kiran sleeps beautifully and is a happy kid.

She also believes he will make friends.  The places this doc went with things….

The not-so-good: He will not ever be “normal”.  This isn’t news.  Quite frankly, I have known this in my soul for a long time.  I wouldn’t want him to be anyone but Kiran at this point.  Again, with the strange places this doc went – He will probably never go off to college. ….

Ok…?  I can live with that.

The hard part was she was very noncommittal about whether or not he would ever use words to communicate.  She said something to the effect of “Of course we hope he will eventually use some words but if not, as he gets older, there are all kinds of apps that can be used to communicate”.

This is hard.  This has been a huge thing on our minds lately – and a struggle I cried over just yesterday.  But.  We live in the right time.  There are apps.

But.  Hey.  I teared up every single time she said he will walk.  And she said it at least three times.

 

Always Guessing

I was struggling this weekend.  Kiran seemed to be doing so much better on Friday, but then he had a restless night at his dad’s and didn’t sleep well, and he just still seemed “off” to both of us.  He had a bowel movement that made me feel like his tummy was maybe bothering him – about midday Saturday – so I did what I always do:

I took everything I know about Kiran and all the clues I had in front of me, and I made the best guess I could as to how he might be feeling and what I should do about it.

It wears on me.  To be always guessing, hoping that I hit the mark or close to it.  I wish he could tell me how he’s feeling.  I wish I didn’t have to play detective.

I just forced myself – just now – to finish the registration paperwork for preschool and fill out all the take-home papers that have been sent out so far this year…to the best of my ability.  I left a lot of things blank.  Not on the registration paperwork – I can give medical history and fill out contact information – but the take-home preschool sheets.

I don’t know what Kiran’s favorite color is.  I don’t know what he wants to be when he grows up.  I don’t know his favorite kind of music or his favorite clothes.  And more importantly, I don’t want to guess.

Not even that.  I don’t want to force my opinions onto his being.  Yes, I’m probably overreacting.  I don’t care.  I plan on bringing it up at the meeting we have on Wednesday with his teachers.  Kiran gets to keep his blank spaces, until he decides and communicates his own preferences.

I am struggling so much with this today – It is actually not as often as you might think that I cry while I blog – but it is so hard that Kiran’s ability to communicate is so basic.

Don’t get me wrong – I am beyond thankful he communicates as much as he does.  His body language, his facial expressions, his vocalizations – he is VERY good at communicating emotions!  I know when he’s frustrated or overstimulated or happy or angry or excited or hurting.  I don’t always know why.  I can’t always differentiate between hurting or scared – or overstimulated or excited – but he’s pretty good at giving me a ballpark emotion.  I know not all non-verbal kids express themselves as well as – or as frequently as – Kiran does!

But I wish he could tell me that his tummy hurts or he’s just tired – that he’s hungry or doesn’t feel like eating much – that his favorite color is green today but it was purple yesterday – that he wants to be an astronaut or a rockstar when he grows up –

I’m gonna fight to keep those blank spaces, so they are there when and if he wants to fill them in.