Wednesday, April 22, 2009

Some words to live by:
- Be creedless: be intelligent without dependence upon some formula.
- Be self-reliant: avoid dependence on supernatural agency for intellectual support or moral guidance.
- Be critical: question assumptions and seek certitude scientifically.
- Be tolerant: be open-minded and hold conclusions tentatively.
- Be active: live today and grow by exercising your capacities.
- Be efficient: accomplish the most with the least effort.
- Be versatile: vary your interests to attain a variety of interesting thoughts.
- Be cooperative: find some satisfaction in social activities.
- Be appreciative: make the present enjoyable by your attitude.
- Be idealistic: create and live by ideals which you find inspiring.

Adapted from "A Religious Affirmation," by Archie J. Bahm (1933)

I'm up early today. It will be another busy one, with physical therapy at 9hoo and music class at 11h30. Zoé has been doing great lately. Still crawling like a champ. A true busy bee, she's constantly on the go, opening drawers, dumping her plate of food on the high chair, doing finger painting with apple sauce, emptying Raisin Bran on the floor to see how it feels when it crunches under her braces.

I've been thinking a lot about her and what challenges she faces. It's funny, I read that Marie-Antoinette mentioned that "tribulations make you realize who you are", well I guess it's the case for me.

I have learned how much strength it takes to care for a child with special needs, and how it's okay to not always be okay. To hold grudges against yourself won't help, to look at the glass half full and not half empty is better. It's a challenge, but it now gives true meaning to my life. I don't have time to contemplate the minute details of life, because everything my Zoé does is a true miracle in its own way. We have come from so far, from stretching her little body, having her rest on a little roll, so that she could hold her head up, massaging her tight neck, her helmet, her feet braces, from her glasses to her cute little smile that is now showing itself in its own shy way...

We got the reports on Zoé's occupational therapy and how much she can accomplish and how much more work is needed. I know that for Zoé and for us, it is going to be a life-long process.

We are told that Zoé has good rehab potential, and that is kind of hard to materialize...what does "good" mean? That it will take a very long time, that it's around the corner, that she might not walk on her own, that she will need a stander?

In my filing cabinet I have a drawer for Zoé: medical claims, ophtalmology reports, neurology, cardiology, Pt and OT assessments, prescriptions, Muscular Dystrophy Clinics, but in her filing boxes she has Babar, Old Mc Donald animal farm animals, Raggedy Ann and a plethora of books, for Zoé is an avid reader.

The picture on this page is one of my favorites, it's the first time I got a TRUE smile from Zoé. She was probably seven months then, and we were on our street going for a stroll.

Wednesday, April 15, 2009

First day on the blog

Well, I did it!!!! I'm not sure I know how it works, but I'll try my best to keep you updated on our little angel Zoé and how well she is doing.

She is sleeping right now and I take this opportunity to introduce Zoé. She was born in NYC on December 1st and was diagnosed with Myotonic Dystrophy a genetic disorder that affects her muscles. She was like a little rag doll when she was born, but she can now crawl and do pretty much everything excpet walk. We are working on it though and I am sure that with much perseverence she will ba able to.

She is a lovely little girl (I am not biased ;-) with great disposition, a lot of energy and great enthusiasm. She is a true fighter and will, in time, manage to overcome life's challenges and life with DM.

This is my first time on Zoé's blog, but I'll try to keep you guys updated on everything that goes on, our daily rituals, anecdotes and fun facts about life in Piedmont.

Stay tuned for more to come.