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.