Hard to put into words

Over the past 6 months something has changed in Abby. It is so hard to put down "on paper" what the change is. It is nearly impossible to express it without sounding negative and mean and down-trodden. It's a tough time for us all right now.

From the time Abby was born she was the sweetest, happiest, most laid back child you would ever want to meet. She NEVER greeted us without an ear to ear smile. She persisted through doctors, surgeries, therapies and so much hard work for such a little person. She used her walker and her helmet and her rails without ever missing a beat... and always with a smile. She was the kid that everyone wanted to be around. She was downright inspirational. Her inner strength and happiness were so contagious it was enough to make you want to be a better person.

She got diagnosed with RS and it was like a weight was lifted off of our shoulders. Yes, she had a rare and weird diagnosis but she was going to be fine. She would need help to get around and she would be a little slower than most but it didn't matter. Her incredible personality was going to carry her through. Her intelligence, her sense of humor, her likability, her joy... they would spring her into an amazing and successful life. We were sure of it. I never worried about that part of her life.

And then, like I said, over the past six months something has shifted. She is still all smiles. She is happy most of the time. She is tiny and cute and imp like and so smart it is unbelievable. And this is where it gets tough. She has changed. Her prognosis has changed. When her symptoms rapidly shifted from being 100% motor to 50% motor and the other 50% some mish-mash of sensory dysfunction, emotional regulation problems, acting out, aggression and frustration. She is like a different child.

Maybe it was a lifetime (albeit short but nonetheless her whole lifetime) of struggling to do anything. Having to work to do the simple stuff like roll over and pick up an object.

Maybe it is just another part of her diagnosis unraveling itself.

Maybe it is her personality.

We don't know. But what I do know is that the worry about a lifetime of having a little trouble getting around versus a lifetime of psychological, emotional and sensory paired with motoric dysfunction are two different worlds. Most nights I can't sleep I worry about what life will be like for her. I used to see her surrounded by friends, succeeding at everything she did just showing the world how capable she is. Now I worry about the fact that she can't make friends and has a hard time socializing. I worry that the obsessions and compulsions will get so bad that we have to medicate her. I worry that because she is so impulsive and reckless that people won't want her to play with their children.

Some of it is the typical worry of any parent. But some is much darker and scarier. No parent knows what the future holds. But being a parent of a child whose life is going to be ever harder than "normal"... it's downright terrifying.