To know or not to know

To know or not to know.

A dear friend of mine just told me that her daughter was diagnosed with "Rett Syndrome". I don't know whether it is worse to know or not to know. She was waiting for the doctors to tell her, and a diagnosis was given. It means that now she might be given the tools she will need to explore the new route that has been opened in front of her.

In our support group, yesterday, we pondered over this idea...Is it harder to know, to put a name on what afflicts your child, to have an idea of what the outcome will be like, or not? I guess knowing helps, in its own strange way. Zoé and I now belong to the community of people afflicted with a neuro-muscular disease.

Once you know for sure, what your child has, the loss of normalcy is what then comes into place. After that, you are faced with the mourning of that loss and what you need is time. To ponder, to reflect, to cry, to find the strength needed to keep going on, and ultimately, you will reach a place from which one never comes back, that of the sorority or fraternity of special parents of special kids. It's a different place and a nice one. I have met so many amazing people in this sorority, that if it hadn't been for Zoé I would have missed out on these beautiful moms and dads.

Again, having a child, period, means a new life, a new chapter, a new set of rules.

Then, you are told that this child, after 3 or 4 years is a new child with a set of symptoms, a new life, a new outcome.

Degenerative diseases are harsh, for you have no idea what life has in store for you.
You try to live day by day, you can't idealize the future. You were dealt one hand, and that's it, you play with the set of cards you were given, you have no choice.

It's the small victories that your child will achieve that will teach you what life is all about. We won't teach our children about life, for theirs will be a different one, they will be our instructors: so that we can learn patience, confidence, faith, strength. They won't need to teach us LOVE for that comes with the cards, no matter what. I love Zoé more than anything. I've often wondered what my life would be like if we didn't have MMD. Well, I can't imagine it and I guess, my only wish would be for Zoé not to have it. She would still be my very, unique, special child!

In fact, for those of you who don't know it, Zoé shed the light on our family tree, for without her, none of us would have known that we were or were not afflicted with Myotonic Dystrophy. I hear of so many stories about moms or dads, who one day, are told that their child has inherited their good looks and their genes, and a small abnormality on chromosome x y z. Life is amazing!


Yesterday, a new family came to visit PIP (Parent Infant Program) where Zoé goes twice a week. We were introduced to their daughter, Nova, a beautiful little 9 week old baby with Down Syndrome. They were thinking about whether they wanted a home-based early intervention program for their daughter or a center-based one. They were thrilled to see our group, how kids interact, what progress they can achieve. It was nice for them to be given a glimpse of what we live on a day to day basis and the journey they are about to embark upon. I wish them well. We look forward to seeing more of Nova really soon.

Till then, we send you our warmest thoughts on this sunny Friday afternoon...