Tuesday, June 26, 2012

a rett syndrome roller coaster ride

If I could compare living with Rett syndrome to riding a roller coaster, I think it would be safe to say this past weekend was definitely a loop on the track - the kind of loop that gives you whiplash and makes you feel like you need to throw up a little. Or maybe even a lot.

I've gone back and forth about how I would record the events of the past few days - or if I would even record them at all. I'm trying to balance my own personal need to be honest and record the truth while still trying to maintain a relatively positive outlook. Or at least not make Leah {or myself!} look like a horrendous villain.

Because to sum it up, the past few days were filled with everything I truly and deeply despise about Rett syndrome. As a mother, I have always and will always love Leah with my entire being. But this past weekend, I didn't like her. And that made me so sad.

Then it made me feel downright awful because I realized it wasn't Leah that I didn't like. It wasn't even Leah with Rett syndrome that I didn't like. It was Leah with Rett syndrome who has to take seizure medications that I didn't like. Medications that have to alter her brain so her body won't flip out. Medications that make her dizzy and tired and aggressive and, this weekend, downright mean.

Right now, she just isn't my happy-go-lucky, always lovable Leah. And it breaks my heart.

I won't go into details about what, exactly, went down this weekend because that's just not fair to Leah. But I will say there was a lot of screaming {mostly me}, crying {both of us}, and hitting, kicking, biting and throwing {miss Leah...and maybe I threw one thing}. And I got peed on. Intentionally. By Leah. It was not awesome at all. {As a sidenote: apparently potty seats will break when they are thrown against the wall. Just a tip.} And it definitely wasn't pretty.

Yesterday afternoon, just after an altercation that included blueberries being strewn about my kitchen and living room {those apraxic hands can sure be accurate when they want to be!}, I marched her to her bedroom for a much needed nap. I then strapped Kate into the bjorn and the two of us took multiple laps around the circle in the fresh, damp air. For 45 minutes I walked. I vented to myself. I teared up more than once. I despised passersby for their obviously normal and problem-free lives {which is obviously ridiculous}. I marveled at the beauty of my surroundings. I thought about 20 things all at once. I thought about nothing at all. And I breathed.

When I finished, my problems were still there, but I felt renewed enough to walk back through the front door and try to be human again.

I feel like there has to be a solution. We can't chalk it up to learning to be patient because no one deserves to be treated like garbage just to learn patience. People who come in contact with Leah don't deserve to be whacked in the face by her flailing hands, but Leah doesn't deserve to be secluded just because she is physically unable to control all her body does - and all it doesn't do that she wishes it would.

My thoughts inevitably led me to New Orleans where so many of my friends were gathered this weekend at the 7th World Rett Syndrome Congress hosted by the IRSF. Although I'm not about to complain about the reason I couldn't attend {ahem, Kate}, I would be lying if I said I didn't wish I was there. My heart hurt all weekend as I saw Facebook updates from someone in New Orleans every time I turned on my computer or phone. Or when I saw pictures posted of Rett parents and friends wearing strands of mardi gras beads - the same beads Leah had to wear at all times just a few years ago. The ones she put over her head with her own two working hands.

This weekend, more than most weekends throughout the past 2.5 years, I needed to be in a room with someone who could tell me it will all be okay. Someone who could say they understand. Someone who could offer some sort of advice or buoy me up a bit.

That's when I got a text from Colleen. A text with an audio recording of the closing session of the Congress given by the Chief Scientific Officer of the IRSF, Steve Kaminsky {the one I met in Cape Cod a few weeks ago}. Mr. Kaminsky made a pledge to a room full of parents, doctors, caregivers, teachers and girls with Rett syndrome that our pleas are being heard. Treatments are coming. And he will make sure to find a way to move that research forward as fast as possible.

And then I read a post from Erica summing up her incredible weekend there.

So, although I wasn't physically there, Colleen and Erica were able to send a bit of the conference to me and I couldn't have asked for more. I climbed the stairs to Leah's bedroom and kissed her sleeping cheeks.

Tomorrow is a new day. And although there will still be Rett syndrome tomorrow, we will also be one day closer to a viable treatment. We will be one day closer to a cure. One day closer to getting the real Leah back. My happy-go-lucky, always lovable Leah.

And that makes the roller coaster ride worth it. Whiplash, throw up and all.


Kelli Marshall said...

so you're telling me my package came on a "good" weekend:) sorry dude. i wish i was there to help give you a little break....and i hear ya on the throwing things... it may or may not happen around here:)

mj said...

Kb you have no idea how perfect the arrival of that package was for us.

Morgan said...

i'm so sorry mare. if it helps, i think you are a rockstar mom. seriously, you're amazing and strong, even if you don't feel like you are. it's true. if you feel like you need to come lay around and relax in central park or one of NY's fine beaches, we would LOVE it!! although i'm sure a 4 hour drive by yourself isn't high up on your list of things to do while ryan is gone. ;) but even so...

Erica said...

oh im so glad colleen was so smart to record that! and then send it! you know how you topped off my weekend? by sending me those awesome ribbons. I smiled through my tied eyes when I got home from the airport. we missed you terribly in new orleans. terribly.
you know I have had my share of weekends like the one you just had. it stinks big time. and you are right about it all. none of it is fair. but we are heading toward an amazing day in the not too distant future. i know it. huge hugs.

Jen said...

That's a beautiful toothless smile! :)

Colleen said...

Sorry that your weekend wasn't an easier one, I hope that the meds mellow and Leah shines through again like she somehow always seems to do. Love and miss you. xx

Marcy said...

I don't know what it's like to have a child with Rett syndrome, but I do know what it's like at times to get so frustrated as to yell and even feel like I don't like my own "normal" healthy children. I'm sorry you had such a difficult weekend. For what it's worth, none of you sound anywhere close to "villains." indeed you sound like an incredibly patient and loving mom living through circumstances that would stretch most people pretty thin (including that whole just-had-a-baby-and-your-husband-is-away thing).

Kelly said...

such a heartfelt, honest, and hard to read post. I want to just jump through this screen and give ya a big old hug! I can't say there will not be any more deep bends or cork screws in the roller coaster but I can say that there are cars full of us with you on this ride....through every high and low!

dah said...

I love you Mare....and in my "pervasive disorder, autistic, mentally retarded" experience I can relate..I wish i could share the load. I think it is such an oxymoron to try and have a contention free home...that we long for...when "contention" comes with the territory...I listen to a lot of Hilary Weeks cds :) And by the way...i am glad I am not waiting by the phone for you to call like you threatened :) I want you to call when it is a good time for you....and in the meantime I will stalk you on blogs :) You are loved! Dah