“Let It Be” -Amy

As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let your mind wander into topics that make you really sad or scared. That’s been happening to me recently.

I look at Ben now and he is the cutest, sweetest little boy. He lights up a room and everyone takes to him easily. And I’ve been thinking to myself that it won’t last, and that’s got me all up in my head. There’s so much uncertainty with CTD and how it will impact Ben as he gets older that I imagine all sorts of scenarios.

The hardest is when I think of him as a teenager or a grown man. Or when I think about him progressing through the school years. That seems so unreal to me, so different than where we are today that it’s tough to take.

At five, Ben looks like a little boy, perhaps a toddler still. And he’s still in special needs preschool and will be for one more year. We are still in a comfortable time of his life, I think, because of it. There will come a day when it is more obvious that something is different about him and times in his life when his behavior changes, and we’ll have to deal with that. I hope I can continue to be strong enough to do what is needed with grace, hope, and love.

Maybe as he gets older and we encounter more challenges, perhaps it will be like adding on a little at a time, so it doesn’t seem overwhelming? Gosh, I just don’t know. I came to terms with the fact that Ben’s life won’t go as I had planned long ago, but the “how” we will get through new challenges and new stages of life seems so daunting at times.

I don’t think I’m saying anything new that another mom in a similar situation hasn’t thought or felt. I know I will do what I need to do when it’s time. Sometimes I need to voice my feelings, so I can move on for now and focus on the present.

I just heard an interview with James Corden this week that made me gain a little more focus. He very eloquently spoke about how living in the past or worrying about the future is wasteful because the only thing that matters is the present.

So, on that advice, I’m going to let it be. The best thing I can do is live in the moment, enjoy my little boy, and take life’s challenges day by day.

 

Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.