rettsyndrome.org

Monday, May 7, 2018

This is Rett

These days, I rarely lament what has been lost. We have kind of gotten into a groove and are just "used to" this life now.  We have experienced enough that we aren't afraid anymore of trying new things with her, venturing out to what might have been scary places. 
I finished a book on the plane Friday that brought hot fast tears to my cheeks. 
I started reading this book at least 6 months ago, and Ill go ahead an blame my kindle for the lag in finishing.  I tend to forget what books I have purchased and are on the damn thing! It's also because I'm too tired or too busy most nights to nestle in and read. 
Anyway.  On a girls trip to Arizona in November, I finished an amazing book called It's Not Yet Dark, a beautiful memoir written via eye gaze by a man with a disease related to ALS.  I read it because I'm a glutton for punishment and because my mom had ALS-it took her over 11 years ago at the age of 63. It was, of course, tough, at times to read but it was so positive and I highly recommend it. So I finish this book and my kindle says "others who bought this book also bought these terribly sad books". I pick one. I'm not sure I remember exactly why I picked it but I did.  It was called Beyond The High Blue Air.  It's a true story of a young man who suffers a traumatic brain injury snowboarding. He is alive but in a minimally conscious state.  It is from his mothers point of view and it is heart wrenching. Absolutely heart wrenching. I finished it on another girls trip to Arizona....
Basically it tells a tale of this once vibrant, strong, healthy young man being thrust into this new world of care teams, indignity, and pain, all with no verbal communication but very real and clear emotions. (The young man dies-after a hard fight to help him end his life mercifully that failed.)
This is what it means to have Rett syndrome. Rett is a spectrum disorder (ranging from very mild with some language to very ill) and our daughter is mildly affected. She isn't in pain all the time, she doesn't suffer many indignities that I know of and isn't that medically involved. But, it does not change the fact that she has very real and clear emotions and is non verbal. This isn't to say she is quiet-because for the most part she is not. And it doesn't change the fact that she could in fact die in her sleep.
Lately, for at least the past 6-8 months, Avery has had almost daily crying spells. She used to never cry.  Really, never. She is almost 12.  Is it hormones? Is she sad about her life? Is she hungry? Is she thinking about something sad? I have no clue. 
Yes, she has a communication device but surprise! It's not working well. And I'm also one of the lazy Rett moms who doesn't invest enough time and energy into programming and facilitating. I really am.  I literally work at a Rett clinic and my daughter should be set. I'm lazy. I am. Working on it.
See, she has always been happy. Almost always.  Except during regression.  But since then, for sure. She loves music, family, parties, school, friends. She is just like me. 
And at the same time this gorgeous girl of mine is like a toddler.  We awaken in the middle of the night to her cries because her sheets are off and she is cold.  She cannot pull her sheets over her. She might have a bug bite and cannot itch it. She might be thirsty but cant yell "mom I need a drink". I literally lift her out of bed in the morning and dress her and feed her every single bite of food. I brush her hair, I pick out her clothes, I brush her teeth, I HOPE I am making the right choices for her. I put her in the car and take her out. At almost 12 years old I change her diapers. It is so normal to me that I dare to think about how it feels for her.  
She will be in middle school in the fall.  I cant even. I have fought for her to go to her neighborhood school for the past three years. I want to keep her in elementary forever. The older she gets the less easy and in the "groove" this life is. At this point I'm wondering if middle school should be spent with me....
In 5 days we go to see Taylor Swift.  This will be her 2nd time.  Whole family going this time. We "chatted" about it tonight and she is clearly pumped. As am I.  But I'm still sad.  This is Rett.  

2 comments:

Harriet Heydemann said...

You have every right to be sad. This is what sad is. I'm not much on pep talks.
Let's see if we can find you some help programming that communication device to make it easier ( and even fun) for both of you.
We can talk more at the clinic next month.

Stacy Martin said...

Beautifully written. :)