This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them.
One of the overlooked impacts of Rett Syndrome is that on siblings. In some ways, it’s a good impact. Our other children are usually empathetic to disabled in public, stick up for their sisters and brothers in front of others. Debbie once told me she can tell her “sister secrets” to Katelin because she KNEW that she would never tell anyone. But it’s a two sided coin. They also suffer.
They suffer the loss of a sibling that they were counting on to be their friend, teammate on the neighborhood basketball team or baseball team. They lost their tea party planner and guest and Barbie pretend player. They won’t ever share clothes or talk about boys and giggle.
They have to do things “normal” children would never even think about-help restrain their sister or brother when they are out of control, watch and give the heads up if a seizure starts, run for enemas and diapers and wipes for their grown sibling. They lose sleep when it’s a screaming night, their grades suffer, their social life suffers, they are also the silent victims of Rett Syndrome.
These children, that need their moms and dads, don’t get them. The child with Rett syndrome takes precedence every time. Can you imagine your 16 year old just had her heart broke and needs you, but Rett syndrome says “too bad” and your other child needs feeding, diaper changing, is throwing a fit? Who can she cry to, then?? For some, you only get to one baseball game or soccer game and it’s not the one your other kid scores in? What a loss for both of you. Others, it’s countless days at the hospital, and barely seeing their other children. Oh, and the holidays, also known as our least favorite days of all. How terribly sad is that. Christmas isn’t something to look forward to, it’s a day to dread- When there’s no where to go, routines are totally interrupted and presents are taken as soon as possible into other rooms, and life returns to the same old doldrums routine; not to mention summer vacation is something to be survived if at all possible.
The siblings, oh, they struggle. How stuck are they?? They love their sister/brother, of course, but how can they separate Rett syndrome from it’s personification in their sister or brother? What does it matter when they can’t go to the zoo, or their mom can’t go to sporting events, or school functions or when people ask “what is the matter with your sister? Why is she drooling?” Their life is so full of loss it’s heartbreaking. I wish I could take back all those sleepless nights. The days they stayed home from school just so they could sleep, the failing grades during difficult times, when every night was like a battle.
I grieve for my other children as much as I grieve for Katelin, and I can only hope that they realize later, that we did the best we could as a family, that there were some pretty spectacular times, some special moments, that didn’t include their sister, but that there were some pretty spectacular ones that did.
There are of course times when none of this is true, when everything is going ok. When laughter abounds and sometimes “good” goes on for a long time; But the threat of the opposite is always there.
That is Rett syndrome, constantly peering out of the shadows waiting to strike, and I have as often yelled at it to leave my other children alone as I have Katelin. And when effective treatment/cure comes, it will be for my other children as well. How grand it will be for them to meet the sister that was taken so many years ago.