A Body Bound by a Brain #3

boy and girl.jpgOh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, not just mama or dada, a real first word. For my oldest it was apple, for my youngest it was mogicydle (motorcycle for those who don’t speak Sean baby speak,lol) and for Katie it was DOUGH (Go for those who are wondering); I would hold her swing up and she would say “dough” and bounce a bit in the swing so excited. Sometimes she would throw her head back a bit. And this would be followed by “nigh, nigh”, “mommy”, “daddy”, “kitty”, “ball”, “bubble” and the last one was “ight” for light. She was just turning one.

And then…they went away. One by one. I remember the very last time she said “mama” (no more mommy). I was outside talking to someone and she was at the screen door calling for me, “mama, mama”. I remember it because I made myself remember after I hadn’t heard it in awhile, “Now when was the last time?” and I recalled it and I kept it. I drew the picture of it over and over in my mind, recording the sound of it, listening to it over and over in my mind until I wore it out I guess, because there came a time I couldn’t recall the sound of her voice. But, I never forgot the scene. That was seared into my brain.

And then…they were all gone. Does it seem like such a loss? Not even ten words-replaced by screaming or nothing; no babbling, no laughing, no giggles. It was screaming or silence. I never did figure out which was worse.

Let me try to explain to those who cannot comprehend what is happening at this age. In essence it’s almost like they had a stroke, not that they did, but it’s the closest thing I can think of to compare this stage to, so that people might understand. Think of your grandparents who had strokes and could no longer talk, though they remember being able to, their brains just won’t let it happen.

Our children regress, they lose their skills, they can no longer speak, BUT they are trying to. Their brains are firing all the right signals. They hear everything around them. They UNDERSTAND what is being said at age appropriate level for the most part. They hear us pleading with them to try, just try, come on you can do it, because at this age we have no clue what is going on. Can you IMAGINE being pleaded with to just say a word, just one and your brain is trying but it just can’t make it happen? Can you even grasp how frustrating that must be?? I can tell you that it is so frustrating that my child screamed for 6-8 hours a day at this age. She banged her head, bit herself until she bled. She wouldn’t look at anyone, yet couldn’t be alone, the sound of a door closing would send her into a panic attack, she became claustrophobic. She hit us, bit us, pulled her hair out and pulled ours. It was horrific and if you ask me how I survived it, I wouldn’t be able to tell you because it lasted for years.

Maybe right now you’re saying to yourself, “wow, all that screaming must’ve been so hard,” and you’d be right, but you know what’s even harder? Not knowing why your child is screaming. Are they hungry? Are they hurt? Is their bowel twisted? Where is it hurting? Is it the ears, the throat, the belly? Are they frustrated? What do they want, what do they need? “What” fills your mind as you start down your list, in order of probability. Every parent has one. They’re not the same order, but I can all but guarantee we all have the same things on our lists, give or take one or two things. When you get to the bottom and you haven’t got it figured out… to the ER you go. When Katie was 5 she fell off a swing, she cried and cried. I just figured it scared her. She wasn’t screaming in pain, she just cried (Rett children, in general, have a high pain tolerance.)  At 5 years old most children would just tell you what hurt, but not my girl. Turns out she broke both bones in her right arm, and she couldn’t even point to where it hurt. This is so common a thing, that it is literally my worst nightmare, that something serious will be wrong and I won’t catch it in time. I doubt that I am alone in this.

You see, you may be saying so what if those kids can’t talk, let ’em point to what they want. But, did you forget? Our children can’t really use their hands. They can use their eyes, though, so we watch those eyes like hawks. And some children are learning to use AAC; Assisted Augmentative Communication and doing a bang up job of it, too. But it isn’t easy and it’s not the same. It’s not like a voice that you have right at your disposal, it has to be set up, the child needs to be near it and of a mind to use it.

Now, Katie is 24 and she has beaten the odds against Rett syndrome in many ways. She regained her hand use to a fair extent, she can still walk, and she regained some language (about 100 words and phrases) and eventually surpassed what she had learned before she regressed. This is a miracle and I know it. To put it in perspective, because of those few things, that she can’t even do as well, as long or as much as even a child, this puts her in the top 1% of children/adults with Rett syndrome. Still can’t tell me where it hurts, though. Or what she wants for supper, or that she’s cold, or too hot.

I am one of the very, very few lucky mothers that get to hear the word “mommy” again. I don’t take a single syllable for granted, not one. I want that for all the mommies and daddies out there, many who have waited a lifetime for just one little word. And, I know it’s possible. I KNOW it. Because once, Katie was in a trial. Sitting by a handsome man, she looked up at him and said as clear and correct as could be- “You’re a cute guy!” My girl is a flirt, no doubt about that. She wants a phone when she can talk, and a car; a black one. I told her yes to the phone, no to the car, lol. But, you see, she understands what is possible, she’s been waiting a lifetime too and so have a lot of other girls and boys.

This entry was posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

One Response to A Body Bound by a Brain #3

  1. Thank you for the glimpse into their world.

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