My biggest fear as the parent of a child with a rare, terminal disease

By Jen Sarkar

I have quite a few fears. I rarely share them as I am a very guarded person; having a child with a terminal disease will do that to you. However, as I am currently working on the never-ending project of growing and developing myself, I feel comfortable sharing my biggest fear with you.

My biggest fear is not living in the moment.  We all do it; you rush to get your camera or phone to capture these little moments that will soon become memories.  I worry that when I look back at those pictures or videos, I will have regrets of not putting down the camera and become upset that I didn’t just soak in the moment.

Then, another part of me says I am irrational and tell myself to keep capturing everything because you never know when it will all be gone. For instance, when Carter used to burp, he would say, “excuse me, it my tum-tum.”  Our sweet boy hasn’t said that phrase in over three-and-a-half years, and I am so thankful I have numerous videos of him saying it.

I know there is no right or wrong answer to this. It’s just mom guilt, I suppose. If I continue to live by Carter’s motto, live today, hope for tomorrow, I think that could help. One day, if I had my phone all day well, then the next day maybe I step back a bit to enjoy those moments. With everything in life, there needs to be a balance, and perhaps that’s the answer.

This article was originally published on The Mighty

Jen is mum to Carter {aka C-Money} who was diagnosed with Sanfilippo Syndrome type A in May 2016.  On top of this diagnosis C-Money also has chronic pancreatitis due to a rare CTRC gene mutation. You can follow their journey at http://carterschallenge.com/