October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.
So, how to make people aware? There are so many ways and we each find our own, simple but effective ways.
I am going to use this first post this month to list the ways we, who love these children and adults, have to be aware. Every. Single. Day.
- If our child isn’t awake on time…no matter how old they are…we check to see if they are breathing. We NEVER assume they are just sleeping in.
- We watch their eyes. What are they looking at? What do they want? It’s exhausting to be responsible for noticing a flicker and then feel like the worst parent ever, if you miss it.
- Are they in pain? Then we have to search for it, like detectives. We have a mental list we go through, head to toe. If we can’t figure it out, we go to the ER. Imagine having broken your arm or leg and not a soul in the world can guess because you can’t speak. Then we are very aware of the GUILT of having missed it.
- We have to figure out what is making them upset. This could be ANYTHING-as simple as a favorite toy not being where it’s supposed to be, not having their favorite program on, or even something that happened at school and you have no idea occurred.
- We have to keep track of feeding habits. Do they scream after eating? Could be reflux or gall stones. Are they losing weight? Do they need a feeding tube? Can they swallow? They coughed….did they aspirate? Will they get pneumonia, now?
- We have to know they need a yearly EKG.
- We have to know they need scoliosis checks/kyphosis checks.
- We have to think about if/when we should do surgery.
- We are aware of who’s in the hospital, we watch their parents chronicle the hospitalization, we see when it goes south, we are there in spirit when parents have to make decisions we never want to make, but are always in the back of our minds.
- We have to be aware of what is going on in schools, day programs, how can we make the experience better, how can we educate children who can’t speak?
- We are aware EVERY. SINGLE. DAY. that most likely we have somehow failed our children that day by missing a glance, a tear, a sigh, a sound, an effort.
That is how I view Rett syndrome Awareness. Our children need a treatment, a cure. Because the most important thing we are aware of….
Time is not on our side.