Tuesday, February 22, 2011

Closing a chapter

Like in a good book, when you finish the last chapter, you tend to feel a bit of nostalgia at leaving the protagonists behind, well that's how I felt today when I returned Zoé's walker, her "chacha" (the name we had given it after Zoe followed her friend Charlotte for the first time). I felt like it was a double- edge sword, feeling blessed that Zoé no longer needed her walking device, but also recollecting the first day I had come to CCS with mom and dad, and how I had cried when the clinic doctor had told me that Zoé would probably not walk, but that only time would tell...well, it's been a triumph, defeating the odds, contradicting what an other neurologist at UCSF had told me as well, that she'd be in a wheelchair.
I had prepared myself and I still think of it as an eventuality in the future, down the road, but as I like to say, we'll cross that bridge when we get to it.

I don't look at disability the same way, and even though I used to always feel very far from it, I now embrace the chance of knowing so many people with differences, with disabilities, with their own norms, we share a lot of them.
Now I read Dandelion, my special needs magazine where I read about helpful tips to survive the IEP, where I muse over the challenges faced by a family with a child with down syndrome.
Don't worry, I still read fiction and non- fiction for pleasure and relish sitting down with a cup of tea and The New York Times.

This weekend, Irina a longtime friend and old colleague of mine spent two nights at our house. Her son is on the autism spectrum and I remembered going to his baptism and a BBQ at their house before I ever had Zoé. I had no idea what she was going through. I hadn't the slightest clue of what her life was all about, and I can now so relate to what she is going through, the hurdles she's faced, the little victories we are now sharing on a daily basis-- when her son ate chicken for the first time, and when Zoé crawled for the first time. I watch those videos to remind myself how far we've come. Irina was such an inspiration, we shared our many tales and spent a lovely day driving around the bay, talking about our kids, about what natural remedies could help them (homeopathy for example), we talked
about the future and the hopes we have and share.

I last wrote on the blog a couple days ago and I now have time to write as I sit in the waiting room of Zoé's speech therapist.
It's funny and eerie the way we all look at each other. All the parents I meet, shy smiles, side glances and nods of understanding, as if we were all together in the same boat gliding over the seas of differences.
We speak the same language, it is called silence. Sometimes we don't need to say what is written all over our faces.
Sometimes the bold ones ask you what your child has, why he/ she is here, what the future holds, and then there are times when nothing needs to be said, where silences tell many stories.
On a different note but still pertaining to life with MMD (Steinert), which is the subtitle to this blog, I have decided to really get into an exercising regimen. I need to move my muscles as much as Zoé's. I am quite proud to say that I went on a 4-hour bike ride through San Francisco this week, with a friend, Olivier, who made me discover a side of the city I didn't know.
Symptoms are creeping and so I need to keep moving. Steinert sometimes exhausts me, but also Zoé's schedule, and the fact that I have to carry her a lot. It's 33 pounds of love, but also of "dead weight" for she doesn't really strap onto me. It takes its toll on the body.
I now try to take a nap when Zoé goes down to catch some ZZs. Reenergizing the battery, so I can keep on going for Zoé whose day finishes at 8:30pm when her Daddy puts her to bed.
I hope this post finds you all well wherever you may be. Have a lovely weekend. I will put some pictures on my next post.

1 comment:

Fiamma said...

Go, Zoe, Go!
We're rooting for you on the East coast! and so proud of you!
Lots of love to all-and love the picture of Zoe in her headband! So cute!