Most of the time the fact that Abby has rhombemcephalosynapsis escapes my mind. When she is sitting on the sofa watching tv or playing dolls with her sister you hardly would know. I also don't tend to think of it in the big moments either. It's not like every time she falls and bangs her head we think "that damn RS again". In those moments we're just concerned whether our kid is okay.
It's the little moments. It's the times when she is playing with friends but has to take a break because her legs are tired. It's the face she makes when I know a round of leg cramps are settling in. It's when she has to go to the millionth doctors appointments. Those are the moments it's quite obvious we are dealing with something bigger than ourselves.
This past weekend Abby and I decided to walk to my Mom's house. It has been raining (NON STOP) in NJ lately and we wanted to take advantage of a break in the heavy rain clouds. It was only sprinkling so we grabbed our umbrellas and started walking. When we went to cross the street I instructed Abby to hold her umbrella with one hand and hold my hand. We got halfway across the street and she lowered her umbrella. I told her to put her umbrella over her head and she started to cry. She told me the umbrella (he toddler Dora umbrella that weighs about a pound) was "way too heavy for one hand". In that moment I wanted to cry.
Yes, she falls a lot. Yes she loses her balance like a baby learning to walk. Yes, she has a rare medical diagnosis. But on top of it her little arms have so little muscle tone she needs two hands to hold up her umbrella. It may not seem like much but to her it's everything.