Rollercoaster Road: Defeated Edition

Real talk: I am feeling pretty defeated at the moment. Tapped out. Exhausted. Not able to control or fix. Embarrassed.

But really, just defeated. That’s the best word right now.

I should say: Kiran is fine. We really didn’t get any big news today at the neurology appointment. She suspects autonomic disorder but is puzzled with its one-side-at-a-time occurrence. She does not suspect a tumor, which is, in itself, a huge relief.

But she did feel his stomach for about 100 years and kept saying “It’s probably nothing” until I finally said “Ok, it’s probably nothing. But what could it be?” Well. A tumor. So we did get to spend part of our morning worried he had a tumor, and we got to have an ultrasound and then an x-Ray.

What she felt? Stool. He’s backed up quite a bit. It is likely because of the recent increase in iron, despite trying to be very careful by also increasing the “p” foods and periodically using oils as softeners.

I am throwing up the white flag. I feel like I have barely been able to keep on top of his poop rollercoaster before we had to deal with any sort of dietary/nutrition issues. So I am currently waiting for GI to call, and I will do whatever they recommend. I have already emailed the dietician and asked for help with skeleton blends so I don’t have to try to think through this alone. I’m not sure why I have insisted for so long to fight this battle without medicine or help from the dietician.

But, like with everything, it’s a journey. It involves learning and growth and surrender and defeat. A whole lot of overwhelm and anxiety. Grief. Joy. Relief.

The resident was rattling off Kiran’s diagnoses to the neurologist, and I was beginning to have to hold back tears. So I turned to my son and said “just all the things that make you beautiful”. And unique. This random redness may also be added to that unique color-me-baffled list.

I should have known answers wouldn’t come when the first thing we heard was “Well, you’re here for an interesting symptom.”

Yes. Yes, we are. With a beautiful boy.

The road feels too long and too rough in this moment, but I was reminded today I don’t walk it alone. Not just in the way I always know – together, alongside this beautiful boy and all the people who love him so dearly – but also with the medical professionals. I can let them in – the GI doc and the dietician – I can stop holding that piece so fiercely as my own.

Because, quite frankly, I need the help. I need the break from the rollercoaster. At least this one.


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