I’m not normal.

Kiran rarely sleeps in.  He is, in general, the best alarm clock I have ever owned.  If anyone wants to wake up to a cute little man making noise or banging his foot brace on the side of his bed promptly at 6 am, I have a kid you can borrow.

That’s not the abnormal part.  The abnormal part comes into play on mornings, like this one, when he does sleep in.  That’s when I recognize how my brain works differently than most people’s.

I am making an assumption, but I would assume most people, upon waking up later than their child’s normal wake-up time, realizing they are sleeping in, don’t immediately worry about walking in to a dead child.

This is not a fear based on a current reality.  Kiran is stable and doing so well medically; there are no immediate, abrupt concerns that would cause such a worry to pop into my brain.  There was a time this concern would have been more valid – any morning the first ten and a half months of his life, for instance, though we had the pulse ox monitoring any changes at that time – but not now.

More than two years post-op, and I still can’t shake that thought when he sleeps in.  If that is not post-traumatic stress, I don’t know what is.

But I realized this morning, it’s not just related to him.  The day my brother was in a car accident, I spent the entire ride to the hospital (an hour away) convincing myself and everyone in the car that he was going to be okay.  Only, we got there, and he wasn’t.  He wasn’t okay at all; he “didn’t make it”.

Despite attempts to the contrary, we take moments like that, and we build protections around ourselves.  If my brain can at least be somewhat prepared to walk into a room and find my son in a “didn’t make it” scenario …

I am not normal.  I am a pessimist, by most people’s labeling techniques.  I am a realist, by my life experience.  I am just someone who wants to be aware of the worst case scenario, because it takes some of the power away when it actually happens.  At least I assume it does.

I don’t want to be caught off guard again.

Post-traumatic stress.  People don’t always think about it as affecting people like me.  But the sudden, unexpected loss of a loved one and living with a medically complex/special needs child – believe me, it’s a part of my world.

Sick days are rest days for me.  Well, rest days for my body, anyway.  Snuggle time, cartoons, longer and more frequent nap times (for him), cancelled appointments, staying in pajamas all day (along with him – solidarity!)

My brain certainly doesn’t get a rest day, though.  Decisions are tough for me anyway, because my brain constantly over-analyzes everything.  I don’t just second-guess myself … heck, I get up to tenth-guessing myself sometimes.

So in the midst of the snuggles and the temperature taking and the slow tube meals and the phone calls to cancel today’s appts and the emails wondering about whether or not to cancel tomorrow’s appts … my brain is most definitely not taking the day off.

Kiran’s managing this illness just fine – no serious concerns – and I am thankful for that.  I can handle low-grade fevers and lack of energy and coughs/stuffy noses and lots and lots of snuggles.  I will never take it for granted, because I will always remember that week in the hospital when he was just under three months old, and there due to a COLD.

So even though my brain doesn’t get the day off, I am thankful that we are home.

You know how moms just…know things!?  I don’t even mean me – not at all – I mean…MY mom knows things.  I have never understood how she knows things, but if I don’t know something (unless it’s about cars or tools or mechanical-type stuff – my dad knows those things), I go to my mom.

I have always felt SO insecure about being a mom because I. Don’t. Know. Things.  I don’t know how to get to the point where you DO know things.  I don’t have the confidence.

Well, today, I realized I do know things.  I know Kiran.  I know him well.  He woke up not feeling well.  He didn’t have a fever, but he was just a bit stuffy, was coughing a little (at a non-feeding time), was struggling more with his oral eating, and was just TIRED.  I assumed he got my cold.  We opted to cancel our preschool meeting with his teacher and associates, because it’s not a good first impression to get everyone sick.

I questioned it a few times today.  But then he continued being not quite right.  We had to alter some things – he was struggling a lot more with his water, so I went back to half nectar thick, and he did a lot better with it – I assume mucus is the culprit.  And we did a two nap day instead of a one nap day – and slowed down on dinner and went to bed early.

Basically, we had a sick day, even though I was questioning if I had made the right call, not really certain that he was sick.

And then I checked on him before my bedtime.  And he was awake, so I got in to snuggle him.  And I thought – He feels warm; I think he has a fever.

Guys.  I know things.

Sure enough, fever of 100.8.  Tylenol and snuggles given, alarms set to check on him a couple times before morning….

There is so much stuff I know that my mom doesn’t – or doesn’t know in as much depth as I do – Kiran has made sure of that.  He has a lot of extra stuff to know.  But I still have to say – it makes me feel good that I know some of this “regular” mom stuff too.

I just have to learn to trust it.

 

Three weeks from today, Kiran has his first day of preschool.

Told you I’d be coming right back to this.

I’m not ready.

I did a preliminary fill-in of his GIANT registration packet today.  As soon as I put the pile off to the side, I am telling you, I was on the verge of a panic attack.  I have had only one in my life, but this felt like it came close to a second one.

How the heck am I going to get through day one?

I keep holding back tears and trying to distract myself.  I KNOW it’s the absolute right, best, most amazing decision we could make for Kiran.  I know he will thrive in the social environment, and he will grow in ways he wouldn’t if he didn’t start now.

I should have had more babysitters.  I should have trained everyone I met on the street how to feed Kiran and care for him.  I should have practiced this more.

Are there room mothers in preschool?  Daily volunteers, perhaps?

I’m not ready.  I don’t foresee being ready in three weeks, either.

I feel like this weekend provided a brief breath – a very brief break from what has been consuming our lives and will be the rest of this month – the preschool transition.

It was a bit of a wonky weekend, which ended up working out really well for my current situation.  Kiran went to his dad’s Saturday morning through Sunday afternoon.

Saturday, my brain got a break because my body was working a catering event, preparations all day and working all evening.

Sunday, the break continued with a relaxing morning, and a work-related lunch, preparing for another catering event this month.

Sunday afternoon, Kiran got to come with me to a birthday party, and he got to ride a unicorn!  Yep.  A nice miniature pony ride, complete with fairy-tale features.  The second ride, he was like a pro.  This was a really great experience for him to have for many reasons, but especially since I have been considering therapeutic horseback riding for him in the near future.  I think it would be a really neat thing for him to experience, and this gives me the confidence to check into it for real.

Sunday night, I got to be with family.  We ate delicious leftovers (a perk of catering with a talented chef) and just spent time together.  It was the perfect ending to a busy but important weekend – other than I could tell I was starting to lose the battle I was waging against this cold.

Which brings me to today.  Kiran and I had a couple errands we HAD to run this morning, and then, due to how crappy I am feeling, we laid on the floor and read books until lunchtime.  He’s been napping since noon, and I am about to wake him up to go spend the rest of the afternoon/evening with his dad.

Things don’t often work out this way, but our Sunday-Monday trade this week means this sick, achy mama gets to spend the rest of the day in bed.

Good thing – cause tomorrow, brief breath is over.  October is BUSY!

 

Traveling back now from yet another Iowa City appointment. I am starting to think I should look for houses there rather than in WDM.

Today, we had a genetic counseling appointment to discuss the whole exome sequencing test – and to sign consent forms, of course.

If Kiran has a genetic disorder that can be identified, this test will give us that information. It is the “most comprehensive genetic test currently available.”

70% of results come back negative, meaning normal.

Genetics has come so far, but there is still so little known. Still, I am glad we are seeking answers at this level.

15% of results come back as VUS’s or “variants of unknown significance”. This means they found some differences in his genes, but they don’t know what the differences mean, if anything. This was what we found with his chromosomal microarray as a newborn. A variant without any known information attached to it.

Only 15% of the results come back with a positive result, or a variant they find that has known significance. Basically – an answer – an underlying genetic cause for all of Kiran’s stuff. A positive result may change his medical care or it may not, but it will give us an answer and resources.

We have to wait 3-4 months for these results. I am cautiously hopeful that Kiran’s results will fall in that last 15%.

But – genetics continues to make exciting progress and there are already the beginnings of even more intricate tests out there – so even if this doesn’t reveal anything, there is always hope.

I wonder if there will ever come a time in my life when I am not so preoccupied with poop.  Kiran’s poop, to be exact.  It seems we figure out a rhythm and a routine, and he goes daily for a few weeks … and then I have to work way too hard to help him go, every other or every third day.

This stinky rollercoaster is killing me.

For the most part, Kiran’s dad and I are in agreement that we would rather use more natural means, as opposed to medication, for such things.  For instance, he was on reflux meds a couple years ago … once we switched him to a blended diet, we attempted weaning him off.  The reflux didn’t get any better, but it also didn’t get any worse.  We now regularly use aloe juice to help with his reflux.  We monitor and if it comes to a point where medication is necessary, we will absolutely try that again.  But for now, if the reflux is going to be the same whether he’s on medicine or not, we’d rather go with not.

In fact, Kiran has been medication free for over a year now, which is crazy.

Anyway.  There are poop options we have never used.  We have never used a laxative or suppository; we have never used an enema.  We have always been able to use other methods – juice, karo syrup, probiotics, time in stander, bicycle legs, positive tummy pressure/rubs – and have been successful.

But boy – sometimes when our entire day revolves around getting the poop out – I question our pure ways.

And let me tell you – when the poop does come, it’s always a celebration.

I took time for me today.  Something I have realized just recently – in the past two days, even – is that I have put all kinds of parameters on myself on when I can use respite care for Kiran.  I keep enforcing all these self-imposed rules, fueled by guilt and outside pressure, and none of it makes any sense.

Today was so important.  It showed me why I should take advantage of the fact I finally have the opportunity for respite care – and why it’s important to not act on my feelings of guilt for taking time.

Here’s what I learned today.  Well, first, here is what today looked like:

8 am – Kiran was dropped off from his overnight with his dad.  We had a nice cuddly conversation, and he had some time in his stander to encourage bowel movements (I’ll likely blog about poop at some point soon; it seems it takes over my mind more days than I’d like).

9 am – We got loaded up and headed to the library for story time!  A friend was able to join last minute, and we had such a fun time together.  He really likes listening to the stories and watching all the kids.  Our one friend from last week approached again and waited to talk with Kiran.  We learned her name and age and had a nice little chat with her.  Heart-warming.

10:30 am – Shortly after getting home after story time, our respite provider (also a family friend) arrived.  We got to all have a nice chat (Believe me, Kiran was putting in his very loud two cents) for the first 20 minutes or so of her time.

11:15 am – I met a friend – another heart mom – out for lunch.  We got to chat for a little over an hour about life and hardships and joy and just everything.  It was really nice.  Good food, good conversation – I rarely get to do this without my attention being totally focused on Kiran.

12:30 pm – Went to the mall and braved Claire’s for an important birthday party coming up – I bet I will blog about that Sunday so stay tuned!

1:15 pm – Stopped at the library, sat on a bench overlooking the pond, and read my book for a blissful twenty minutes.

2:00 pm – Got home, loaded up car and diaper bag for therapy appt, finished chapter in my book.

2:30 pm – Said goodbye to respite provider, got Kiran ready for therapy, headed out.

3:00 pm – Therapy.

4:00 pm – Dad took Kiran home for his overnight after therapy.

Today, I got to enjoy time with Kiran.  I got to take a break from some of the mundane of the every day.  Kiran got time with one of his favorite people, and really, I didn’t even miss much.  He napped from 12-2, and I wasn’t stuck at the house doing chores during it.  It was so nice to have that kind of day, both with my son and out and about on my own.

Also, therapy made me realize why I needed that break.  Right now, it’s all just really overwhelming.  All of Kiran’s early access therapy appointments are around assessing and preparing for the upcoming preschool transition.  They are all emotional and overwhelming and just hard.  I am still coming down off a massive brain rollercoaster, and it’s been 40 minutes since therapy ended.

That is why I need days like today.  That is why I have to stop acting out of guilt or shame or societal expectations or outside pressures and start acting out of what I know I need to be okay.  If I’m okay, Kiran is more okay.

I know it.  I’m trying to act on it more consistently.

Today, I learned something about myself, about life, and about being okay.  Tonight, I am working toward pushing all thoughts of therapy and preschool aside, and I am going to try to continue to take a break.

Self-care.  I’m a stubborn (slow) learner.

Empathy has never been a problem for me.  I feel things deeply – for myself and for others.  I have never feared sitting in someone else’s darkness with them, and believe me, I will sob right along with you when you are sad.

It makes this heart life hard sometimes.  I have literally sobbed for diagnoses and deaths of children I have never met in real life before.  I follow along with stories and some of these kids – and their families – become really important to me.

It’s all personal.

I have followed a story of a little boy with the same heart diagnoses (Tetralogy of Fallot, Pulmonary Atresia, and MAPCAs) as Kiran for a few years now.  And today, his family has basically found out he will die in the near future, due to the severity and uniqueness of his MAPCAs and pressures.

I don’t know the whole story, and I don’t have to.  I sit here now, and I cry with this news.  I cry because I hurt for this mama, even as I can’t imagine what that must be like to hear.  I cry because of the very real fear and the knowledge that I am more prepared to hear this kind of news than most.  I cry because of the uncertainty of these heart conditions, and I cry because of the uncertainty of life in general.

I know it’s not just those of us living the heart life that deal with this pain and this loss.

It has been at the forefront of my thinking lately, as it seems so many in my world are dealing with such tragedy, such horrible and scary diagnoses, such pain, such loss.

And there is nothing I can do.  But I will cry.  For you, with you, every time.

You can count on me to cry.