Warning: I was MAD at Rett this morning.

I love that there is a month set aside for Awareness of Rett Syndrome but to be honest every single day I am very VERY aware of Rett and what it has taken away from my daughter. From the time she wakes up until the time she closes those beautiful eyes to go to sleep each night Rett Syndrome challenges her – it challenges us. This morning was one of those tough mornings where everything that could go wrong with our morning routine did. Today was one of those mornings that at one point I leaned against the wall – slid down to the floor and asked “why?” By the time we got loaded into the van I owed Brooklyn an apology for being frazzled, heck – for being a brat. She gave me that one of a kind smile letting me know it was ok and we ROCKED OUT all the way to school, her bright eyes looking back at me in that rear view mirror reminded me that while I might have hectic mornings from time to time – SHE LIVES WITH RETT day in and day out – fighting against her own body, and she does it like a champ. I don’t see her curled up in fetal position, crying, throwing in the towel – nope – she fights every single day.

Today – her body was fighting her a bit harder, she was not able to sit up independently and we struggled to get every single item of clothing on her,  her muscles were so tight that we needed to take a few extra minutes to massage and apply additional  DoTerra oils simply to stretch her legs out to get her pants on,  the wipes warmer was empty, the dog took off with her shoe, her breakfast blend ended up ALL OVER the kitchen and ALL OVER me, her seizure meds dumped, and…..ok you get the idea – it was a ROUGH one and I got grumpy and I pouted and yelled and I am sure Brooklyn felt it and I sure as heck know she heard it and she does not deserve that. I mean really – oh my goodness – she does NOT WANT to have Rett Syndrome. She does NOT WANT her mom to dress her, she does NOT WANT to eat her breakfast through a feeding tube, or be carried to her wheelchair, or have her mom put her shoes on or not be able to tell me to knock it off when I am brushing her hair a little to rough or singing (badly and probably the wrong words) in the van. (although, if looks could kill…..the girl has her eye roll down!) but the truth is all of this is what Rett takes away from her. Her freedom to be a typical ten  year old girl – to roll out of bed after I ask her 10 times to get up, to pick out an outfit that I might hate, to get on her ipad and play games instead of studying her spelling words like I asked, to put in her ear buds and JAM to One Direction completely ignoring my request for her to eat her breakfast. You know – all the things that frustrate the heck out of my friends with their 10 year old daughters  – I want that. I ache for that. I want Rett to take a long walk off a short pier and give me my daughter back.

But that is not for today.

It might not be ever.

But that is why I fight, that is why I educate, that is why I raise money. So that maybe, hopefully one day soon treatments or our CURE will be here – so that thousands of mothers coming after me don’t have to battle Rett everyday, with every breath, with every ounce of strength they have (and then some.) So Rett won’t ruin any more mornings!

I realize this might not be my typical awareness post – but it is typical of what Rett does to us – how it affects simple things like getting ready for school. Rett Syndrome affects every second of every day – now that sounds like an awareness fact : Rett Syndrome: it affects every second of every day.” Now that is some awareness for ya!

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I love this girl so much it hurts.

 

 

11 Responses

  1. Lesley October 6, 2015 at 10:12 am | | Reply

    Nice! It’s sure is very difficult.

  2. Tammy October 6, 2015 at 10:30 am | | Reply

    Well said, I feel the same way, glad you put it to words…….my favorite line “I want Rett to take a long walk off a short pier and give me my daughter back.

  3. Michele Davis October 6, 2015 at 11:27 am | | Reply

    So beautifully stated, Kelly. One of the many things I have cherished about having you and Brooklyn in my life is appreciating all of the little things with my children. I’ve told you this before, but when I get frustrated and ask them to please quit yelling my name, etc. – I stop and think about how you would love to have that problem. I think of you and Brooklyn often and you two are honestly my heroes. Love you both!

  4. Monica October 6, 2015 at 7:35 pm | | Reply

    Beautifull written Kelly.

  5. Nita Ritze Neu October 6, 2015 at 9:39 pm | | Reply

    I am so glad you have this blog so that I can share in your pains and your joys. Your blog today brought me to tears. I want Rett to take a long walk off a short pier too…for you…for her…for everyone who loves her. Who knew that when you and I worked together with Chase and Mitch, God was preparing you, for the mountains you now have to climb every second of every minute of every day. You and Brooklyn are my heroes too! I want to help you Kelly. I wish we lived closer. I will be in touch. Much love.

  6. Anita sargent October 6, 2015 at 9:52 pm | | Reply

    Thanks for that my daughter Amber is 20 and we have those days to I know exactly how you feel I think about how she would be if she didn’t have rett syn she probably be in college and living her life the way she wants to. But she helps me more than I help her get through the day sometimes it is amazing how strong they can be sometimes she is my rock and and my world. Thanks again I don’t feel so alone now it really helps. God bless you and your beautiful angel.

  7. Cathy October 7, 2015 at 4:20 pm | | Reply

    Kelly,

    Thanks for sharing this with us. I am a recently retired teacher of children with special needs. I have taught 6 students who have Rett’s Syndrome. This certainly gives me insight from a parent’s point of view.

    Your honesty is refreshing as well as your love for your precious daughter. Brooklyn is indeed blessed to have you as her mommy. God bless you and your family.

  8. Melissa H October 8, 2015 at 5:53 pm | | Reply

    I know it is therapeutic for you to write, but I want you to know that it is also therapeutic for me to read your posts. We all need these occasional reminders which makes me stop and be thankful. So often I rush around all day long without taking time to appreciate the little things. Always remember your an inspiration.

  9. Jennifer Endres October 9, 2015 at 12:36 pm | | Reply

    Kelly,
    I just read this…it is beautiful and so spot on…gosh our girls are amazing; they deal with so much and SO gracefully…I have many mornings like you wrote about – all us Rett mamas do…it sure makes those good mornings that much sweeter, right?
    xoxoxo to you, Brooklyn and of course Boston too.
    Jennifer

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