It’s been nearly three months since I’ve put my pen to paper here, on this blog I love. The world is being ravaged by a pandemic and every day is a struggle to get by, to find some normalcy, some sort of purpose in a day that never seems to end. I think most of the world can relate to that.
Today is the first day of Rett syndrome Awareness Month. I’ve made so many posts during this month over the years and I have sometimes wondered if people “get it”. I know WE, the parents, family, caregivers etc. “get it”; but, does the larger population? How can they possibly when there is nothing comparable in their life? How can they truly sympathize with the plight of our children. And then a pandemic came along.
Forgive my impudence, but these are the questions and points that come to mind.
Dear World-
How does it feel? Do you feel trapped? Are you frantic because your routine normal has been flipped around, upside, backwards, nonexistent? Are you freaking out? I think you are. You know who’s calm??? Us. The families of the disabled. We live this every. single. day.
Our “normal” is your worst nightmare. In essence, the pandemic began the day our child was diagnosed. We had a life like yours… a family, a perfect little baby, full of giggles and babble and unsteady, journeying feet and steps…and then BAM!…gone. Poof.
Many parents are prisoners in their own homes. Unable to have a job, many spend every single day like the day before. Make breakfast (or tube feeding, or special diets, or puree, or five different things hoping our child will eat SOMETHING, anything); we change diapers on twenty year old adults and if we’re lucky forty year old adults. We do laundry and then make five lunches for one child hoping something will make its way into their bodies. While you’re all taking up new hobbies, we don’t have time to do a crossword puzzle and forget that knitting project.
Our children are prisoners in their own bodies. Unable to do the things they could before Rett syndrome struck. You have no one in your home to talk to; our children can’t speak. You can only go to the store or to your job and back home; many of our children can’t go from where they are to one step away. They will never go to the store by themselves or to a job, EVER.
The routine you’ve counted on is gone now, isn’t it? Have you thrown anything? Screamed in frustration? Wept for all that you were missing? How many times have you stared at one of our children having a meltdown because their routine was interrupted? Does it really matter if the routine was something as innocent as the wrong pair of shoes, or a door shut that is usually open, or not the right color straw or cup? I feel for you, I truly do. I just ask that you take this new perspective and apply it to the people around you who are truly incapable of handling change or unable to change.
Homeschooling driving you nuts? No time to take a shower? Not one minute of someone not needing you? Join the club. Try taking seven years to teach your child how to feed themselves. Are you frustrated because you have to be there or your child won’t pay attention? Frustrated you have to help them with their sentence structure or math? Our children will never, ever write any sentence with their hands. My child can’t color in a map, or follow instructions and I have to manually use my hands to help her with every single task I put to her. For those still in school, Zoom classes are a joke. Our children need one-on-one help for every single thing. Your child is learning math, our children are learning to make a tower with blocks. Every day our children are not in school they are losing valuable advancements in walking, hand use, social skills and more. You can tell your child… 2+2=4 once and they’ll get it. WE count the blocks as we do hand over hand every. single. day. forever. You see, we learned long ago that our time was no longer “ours”. It is our singular responsibility to help our children. In the end, this is not such a bad lesson to learn.
Are you frightened? Scared that your loved ones might die and there isn’t anything you can do about it? Did they die? I’m so very sorry if someone you loved died to this disease. It happens in our community all the time. Every single night I kiss my girl and say a little prayer she wakes up in the morning. She’s completely healthy, but Rett syndrome doesn’t care; it could take her anyway. Just like COVID does, creeps into homes and takes your perfectly healthy loved one. Or, maybe you or they have a pre-existing condition that makes you more susceptible and so you fear the very air around you? We know this feeling. For many of our children a mere cold is just a hospital stay waiting to happen. Those ventilators, such a scary word nowadays, that you fear are in your future or a loved ones future, they are an every day occurrence in our Rett syndrome pandemic world. They are a blessing, but, just like against COVID, they don’t always win against Rett syndrome.
I could go on, but I suppose you might get an inkling now. I hope so. We know you’re struggling, we care that the world is suffering, we care. Many of our families have lost people to COVID as well. All we ask is that you care for our children as well.
The good news, for you, is one day this will be all over.
Please, take one moment to just look it up and try to understand our struggle. Thank you.
Trail to a Texas Trial 
Perfectly put – my daughter has severe ASD but much of this still applies to us. I am also an MD and have a patient with Rett. I pray for the trofinetide and Anavex 2-73 trials for your daughter and that maybe these may also work for ASD.