Sometimes the little things seem like big things. My mental perspective is working hard right now to shift my heart’s perspective.

Nothing huge to report with Kiran’s vision at this point. His prescription changed a little bit. We are going to do an ERG test at his next appointment, to see if his retinas are working appropriately. (We are currently assuming most of his vision issues are processing issues – brain issues. We want to make sure we aren’t missing any eye functioning issues.).

In addition to seeing the cross-eyed stuff we have been seeing his entire life, this time the docs noticed he is favoring his right eye. His left pupil is slightly smaller than his right pupil.

So. We need to make sure he uses his left eye more and doesn’t start favoring his right eye too much.

So he gets to be a pirate, for one hour every day. We have to put an eye patch over his right eye, while he is awake and we are engaging in something visually stimulating, for one hour every day for the next four months.

Kiran hates it when we even cover his glasses with our hands. We know from his recovery period from his eye surgery in 2017 that he dislikes having an eye patch.

Unfortunately, I am pretty sure he hasn’t grown out of that.

Remember my blog post earlier today, when I said I am already overwhelmed most days and feel I am not enough? This adds one more thing on the daily to our schedule. One more thing I will likely dread but will do anyway.

Because that’s what we do. We keep walking. One step at a time. One foot in front of the other.

Sometimes the road feels longer.

I wonder sometimes, if ever so briefly, why we do it all.

Why we travel four hours round trip to see every single specialist Kiran sees, especially when many of them are unable to coordinate. So, days like today, we make the four hour trip for one appointment.

And in less than two weeks, we will make another four hour trip, but this time we will see two specialists. But that’s another blog for another day – my mama heart can’t think about seeing the cardiologist after an entire year. Not today.

I wonder, too, why I have chosen to take on college classes, in the midst of a life I already find overwhelming most days. In the midst of a life I constantly feel like I am already not enough, as Kiran’s mom and primary caregiver.

The wonder is fleeting. All I have to do is look at this baby boy – turning big boy in the flash of an instant – and I have my answer.

Maybe my world shouldn’t revolve so much around him, but it does. I won’t apologize for it.

We drive four hours round trip because we are comfortable and confident with our medical team in Iowa City. Everyone living the medical life feels that way about their hospital of choice or primary care physician of choice. I respect everyone’s opinions on it – it is a highly personal decision, based on many factors.

For us, Iowa City is where Kiran belongs.

So we make the trip. Many, many times a year. We should have an apartment there, we are there so often. And we will keep making the trip.

And I am taking on school, now, because when I finish and achieve my goal years from now, I will be in a position to support us. I don’t mean just financially. I gave a lot of thought to the career I am pursuing, and it is one that supports our family on every level. The schedule will allow me to be present for my son and to continue to be his primary caregiver when he is not in school.

So I read my textbook in the car on the way to our appointment. I study when he naps and sometimes late into the night. I have regular respite care scheduled, so I know there are times I can focus solely on my role as student for chunks of time. And I will keep doing it.

For him.

When I conceived this little boy, my entire life changed. And it is no longer about me. It can’t be. I have never known another way of loving, and I have never loved like I love my son.

So we march on. One day at a time. It’s a long road ahead, but we journey together.

It is the comment we get most often, from everyone: “He is just SUCH a happy guy!”

He is.  Don’t get me wrong.  I even say it, often.  It is one of my favorite things about Kiran: his joy.  His light.  His spark.  He truly is a ray of light, the meaning behind his given name.

But there is a way some people say it.  Not all.  Some.  Like they are grasping at straws, trying to find the “silver lining”, so to speak.  It’s as if what they are thinking is: “Well, AT LEAST he’s happy!”

It’s an apology for the challenges he faces – or maybe that I face.  Like a “Oh, I am so sorry he’s in a wheelchair…but at least he’s happy!”  “I’m so sorry he doesn’t talk…but at least he’s happy!”

Let me tell you something about that.  I don’t need an apology, and Kiran certainly doesn’t.  And – guess what – his value is INHERENT and has nothing to do with his temperament.  EVEN IF he was grouchy, he would have value.  He doesn’t have to be happy to make anyone feel better or more comfortable about who he is as a person.

I love him when he’s not happy just the same as I love him when he is.  His value has nothing to do with his mood or his abilities or his intelligence or anything.  He’s valuable because he is.  He’s a person with value, like any other person.

I’m glad he’s happy, because happiness is contagious – and because he has a tough road – it certainly does make things better.  But that’s true of anyone.

Don’t ever feel bad for commenting on his happiness – he truly is a joy among joys – but please remember he is valued for so much more than that.

 

Kiran didn’t actually have a fever today.  Thank goodness.  However, he was still worn out from having a fever the previous four days, and I had a lot of disinfecting to do, so we laid low at home until his doctor’s follow-up appointment this afternoon.

Here are some things I learned today:

On day five of my child’s illness, when I haven’t gotten out of the house since sometime on day one, I am going to find myself sobbing on the bathroom floor.  Kiran had just had a bath, and it was all finally too much.  All the worry/stress/exhaustion/what-ifs/overwhelm – it had to manifest itself somehow.  Today, it came out in tears, lying on the bathroom floor next to a squeaky clean Kiran.

One of the (likely many) reasons I struggle with being stuck at home, I realized as we were driving to the doctor’s office this afternoon, is I don’t listen to my radio station.  Kiran and I find ourselves in the car a lot.  And in the car, I listen to a Christian radio station that grounds me.  Like I said to Eric tonight, it helps me keep my head above water.  I don’t think to put it on when we are at home, and I need to.  It would help.

A true medical fever is 100.4 and above.  I don’t know how I got this far along in my journey as Kiran’s mom without knowing that.  He crept up just a little bit this afternoon but never even hit 100, so he technically did not have a fever today.  He could go to school with a temp of 100 (Of course, I’d only send him if he was otherwise acting like himself).  The more you know.

We picked a fantastic pediatrician.  We like the other doctor in the same medical office; we like him a lot.  But he is not her.  I was reminded today, with the two appointments so close together and easily comparable, why we have the best pediatrician in the world.  Seriously.

And finally – truly – this one is so simple, but I forget it so often.  Taking a walk outside in the sunshine is some of the best medicine around.  I won’t say it cured my current brain state – which has not been good in the midst of the past few days with illness and botched schedules and managing schoolwork and being pulled in a million directions while not getting enough sleep – but it helped.  A lot.

And now that the dryer just buzzed and the last blanket (mine) is washed of the sick germs, it is time to get some of that sleep.  That’s bound to help too.

 

 

 

 

I woke up this morning with very high anxiety.  Some mornings are like that for me.  Everything about the day ahead of me seemed like too much, and I wasn’t sure how I was going to get through the day.

And then Kiran threw a wrench in all of it with a fever this morning.

I don’t know if my Mama Bear skills have just gotten that sharpened that my anxiety level can now predict illness, but we are going to go with that explanation for today.

I am not the mom who takes him to the doctor right away, on the first day a fever of 101 appears, if no other symptoms or circumstances exist.  But:

1) We had a doctor appt set up for next week already to make sure we weren’t missing any medical reason for his new extra need for oral input (and the drool that goes with it).

2) His dad is going out of town tomorrow morning.

3) It’s almost the weekend, and we hate ending up in urgent care with doctors who don’t know him.  If we can avoid that, we do.

4) The big one – the always one – He can’t tell us what’s going on.  We don’t know what’s hurting.

It was enough reasons, today, to just go see the doctor.  It wasn’t his regular pediatrician – she is on vacation all week – but we saw the other pediatrician in her clinic.  Though he doesn’t know Kiran as well as Dr. J, he has seen him a handful of times now, and we like and trust him too.

We got what we often get with Kiran: No answers.  I reminded myself the last time we got an answer, the answer was “pneumonia”, so I will take no answer over that….

But still.  It is hard not knowing why.  Still not knowing what hurts, though his throat looked red (His ONLY other symptom discovered).  The assumption is it is something viral, and the fever shouldn’t last longer than Saturday.  If it remains through Monday, he needs to be seen again.  So we changed his Wed. appt with his pediatrician to Monday afternoon.

No concerns with the oral stuff.  No real answers there either.  We have only speculation, like we so often do with Kiran.

I have grown used to it, living inside the unknown, being Kiran’s mom.  I am more comfortable inside the unknown than I ever thought would be possible for me.

And I continue to act on my instincts, even when I question them after the fact.  I debated canceling a playdate this morning, and I debated taking Kiran to therapy this afternoon.  I opted to cancel both, and by the time 12:30 rolled around, his 99.6 temp was up to 101, and he was looking pretty rough.  I remind myself often to listen to my gut, and I am so thankful I can read Kiran as well as I can.

But oh, how I wish that little man could tell me how he’s feeling.  If he’s cold or hot.  If it’s his tummy that’s bothering him or his throat.  If something in his mouth hurts or maybe he has a headache.  It would be so much easier to help him feel better if I knew what was hurting.

So I do what all mamas do: my best.  I snuggle him.  We read.  We watch Daniel Tiger.  He naps more frequently.  We alternate tylenol and ibuprofen.  We see the doctor sometimes; we opt not to whenever possible.  And I love him and care for him with all I am and all I have.

And my anxiety is a little better tonight.  What I have is focused on the little boy who I hope wakes up feeling better.  But I know I’ve got this.

And so does he.  Toughest human I know.

We’ve got this.

My boy is getting big.  It hit me the other day, when I took a picture of him sitting in Papa’s chair.  He looked like a big boy.  No longer a baby, with the chubby cheeks and the chubby little legs.  He’s longer and leaner, and his face is not my baby boy’s face anymore.  He has a big boy face!

Nothing really prepares you for that realization.  This isn’t the first time I have had it, because he’s been my baby-turned-big-boy for awhile now.  But man, it is hitting me lately.  I will have a four year old in October.

What does this mean?

He is still here.  This is the most obvious one.  In some ways, the biggest.  No guarantees exist for anyone, when it comes to the number of days we have on this earth.  With everything he has been through, Kiran has shown his determination to live a long life, here with me.

We have come a long way.  My boy, who I was so scared for, has made it so far.  So far.  In some ways, given the gravity of the diagnoses he has received along the way, further than I anticipated.  In other ways, we are not as far on the path as I had thought or hoped.  But no one can look at Kiran’s life and argue with the fact he has come a LONG way.

He is getting bigger.  Physically bigger.  Heavier.  Harder to hold gracefully in my lap and harder to carry for any length of time.  It means gone are the days of running into the store for a quick minute and leaving his wheelchair in the car.  It means I have to start thinking ahead, on a lot of everyday logistics, because he is as light now as he will be ever again.  He will keep growing, and mobility challenges will grow with him.

It means I simultaneously want to slow time down and rejoice in the fact he has made it to this point.  He is 3 3/4 years old.  There have been times I didn’t know if I would ever be able to say that – and I am thankful.  More than words could say.  Just thankful, to the very depths of me, that he is here.

But the grief comes, as it does for any parent of any child, when the child surpasses the baby and grows to the big.  For me, this grief – this goodbye to the baby stage – comes knowing he will be my only, which wasn’t always my plan.

But then, so much of this life has nothing to do with what I had planned.

This is a quote I see often: “You often feel tired, not because you’ve done too much, but because you’ve done too little of what sparks a light in you.” (Alexander Den Heijer)

I understand how this quote pertains to people – probably many people I don’t even realize – in my life. But it doesn’t pertain to me.

Every day, I am lucky enough to be ultimately doing what sparks my light. Caring for my son is the greatest joy and best job I have ever held.

But I am tired.

To the bone.

Almost all the time.

It is because the work is hard. And never-ending. Often akin to caring for a newborn, because at 3 3/4 years old (yeah, in 3 months, I will have a 4 year old!) and 33 lbs (give or take), I am still his main source of mobility.  I am still deciphering what he is trying to communicate to me at all times.  These stages end years ago for neurotypical kids, but there is no end in sight for us.

It’s because the worrying is hard.  My brain is activated constantly, thinking about medical concerns and developmental concerns, but mostly about whether this trick or that therapy might finally be the thing that brings great progress.

It’s because the guilt is hard.  Our to-do list every day is longer than we could possibly ever accomplish in a 24 hour period.  We do our best.  There is never enough time to practice all the skills we should be practicing.  There is never enough time to enjoy all the life we have to be living.  I feel guilty when the balance swings one way or the other.

My light is sparked.  It’s lit.  It’s shining brightly and brilliantly.  I can honestly say I feel incredibly lucky, and there is nothing else I would rather fill my days with than being Kiran’s mom and primary caregiver.

But it’s hard.  And I’m tired.

To the bone.

Almost all the time.