Thursday, September 26, 2013

Some dreams are still possible

Almost two years ago, I wrote a post on this blog titled "what would Caroline say?"
I read it again this past week with an overwhelming sense of wonder and gratitude. In the post, I described my dream to communicate with Caroline. I also talked about our wish for Caroline to have access to an eye-gaze computer.

Rett Syndrome can really do a number on hopes and dreams. Looking into the future can make me spiral down into a rabbit hole of fear and dread. I had to accept what was robbed, but I also allowed myself to remain cautiously optimistic about certain things. For some reason, I've always felt communication was within our reach. That dream is now closer than we ever imagined it would be at this point.

Before I continue, I'd like to share my personal opinion about skills and Rett Syndrome. I feel like parents are often inadvertently blamed or praised when it comes to their disabled children's skills. To me, Rett Syndrome is the ONLY culprit for missed milestones. Conversely, its occasional mercy allows for some skills to flourish. And each and every single one of our girls has unique strengths. I believe our girls' particular skills are a reflection of how the disorder has decided to manifest itself. I think therapies are incredibly important and necessary (and can often maintain or improve skills), but they can only do so much to fundamentally change what Caroline can and cannot do. Some girls walk, some girls have better use of their hands, and some girls can communicate with a little more ease.

Rett has left Caroline severely physically disabled, but it has also cut her a break by allowing her to express certain needs. I still feel like Caroline and I are separated by a wall that prevents me from hearing what she's telling me, but her eye-gaze computer has started to crack open a door. Caroline can now tell us when she's thirsty, hungry, sad, happy, etc. She tells us if she likes something, and she certainly lets us know if she doesn't. She is able to call for specific people. She even picks who gets to feed her. Most importantly (for her!), she has mastered the use of several different symbols to express her most frequent and urgent need: "Want. Yo Gabba Gabba. Please. Play. Yo Gabba Gabba. Want. Please."

I savor every word she says. And I hope we can eventually kick that door wide open.

I will work on taking video of her using her computer. In the meantime, here are some pictures.

Caroline's main page (each symbol opens up options for more words)

Sunday, September 22, 2013

Running away from Rett Syndrome...until it catches up with me again

Focus on the positive. Focus on the positive. 
Be grateful for what you have (which is a lot).
We are going to be happy despite Rett Syndrome. 

This mantra runs like broken record inside my head.
I took it so far that it ended up blowing up in my face.

I learned to cope with my sadness by tucking it away where nobody could see it, especially me. I also got good at distracting myself from it. Keeping busy is key (and also easy given our schedules). Happy moments with Caroline are always the best distraction. I also have my job, which helps me escape back to a life where I am still "the old me." But the truth is that no matter what's going on, the sorrow is always there. And the difficult feelings bubble up to the surface when I'm alone with my thoughts. So I escaped them again by filling every possible quiet moment (in the car, when I run, when I clean, when I get ready, etc.) with audiobooks, podcasts, music, or comedy.

I did such a good job during the day that something had to give. My sadness, my fears, my anxiety, my anger--all these feelings started keeping me up at night, where there was no escape. The result? I ended up with a horrible long bout of insomnia that I'm still treating with medicine.

I don't think I will ever be able (or want) to change my naturally energetic and happy disposition, but I'm more open about sharing my most difficult feelings. I can say "this sucks" and not worry about people interpreting that as a complaint about Caroline. I'm no longer constantly trying to escape my sorrow. I finally accept that what I really feel is a combination of happiness and sadness, sometimes all at once. And I now know that I can acknowledge these feelings and still remain positive.

I'm starting to feel less alone these days.

Nothing melts away sadness better than seeing this little lady happy