Don’t forget who they are

As a mom with a complex kid it’s easy to get caught up in daily chores and things on my to-do list. There never seems to be enough time in the day. Ever. The list keeps growing and things get forgotten.

Our little guy has a day filled with his own tasks. As soon as he wakes he needs to take on a day filled with therapy and activities I have planned for him. Wake up, meds, water bolus, sit in high chair and play with food while having breakfast via g tube, get ready for therapy, after therapy more tastes of food while feeding him, stander for an hour and a half, play on floor with communication cards, nap…and when he wakes there’s sitting in the corner chair, exercises with peanut ball, outside for a walk…his list goes on and on. Every extra moment is used as a learning experience or therapy. I’m working so diligently to help him reach his full potential that sometimes I forget something…I forget who he is.

First and foremost, he’s a little boy. He’s a silly, loving, raspberry blowing, small child. He’s not a to-do list. He’s not an appointment. He’s not his diagnosis. He’s the 2 year old with the best hair on Facebook. 😉 Yes, he has many issues that require an immense amount of work, and to be honest, there are some things that I’m not ever sure he’ll do but we will never give up. There are far too many unknowns but when I look at him none of that really matters.

He’s my amazing little boy who just wants to be snuggled by his mom. When we are reading books he probably wants to scream stop asking me to point to the cow and just read the book already!!! He’s a child. He’s not congenital disorder of glycosylation. When he throws his head back and screams he’s telling me geez mom! therapy again?! He’s being a toddler, not CDG. He’s being my naughty little boy who is telling me that he wants to make a choice.

Last night as I was holding him on the couch he looked up at me with his beautiful blue eyes and made a “kiss” sound. I kissed him a million times over and he looked at me with so much true love. He was saying thanks for remembering. Thanks for remembering that I’m a little boy first.