Sunday, November 8, 2009


MDA, Muscular Dystrophy Association, the acronym could also stand for "Maman, Daddy and Amusement". We attended a seminar sponsored by the MDA today, and we got to meet up with Lisa, Kayla's mom as well as Leslie, our support group facilitator, and countless other people.
We were really glad to have gone as it made us aware, that we are part of this wonderful community of people.

Zoé was greeted by a lot of people amazed to see her walking triumphantly with her walker. I was so proud of her. She felt empowered herself, and didn't stop walking all morning.
I think she was a true inspiration for others and made quite an impression.

The seminar was devoted to MMD, but also Duchenne Muscular Dystrophy, Charcot-Marie Tooth, Becker and other diseases under the same umbrella of Muscular Dystrophies.

Experts, such as neurologists gave talks followed by Q and A's and we then got to chat with our friends over lunch.
Some awards were given for individuals who go above and beyond for the people MDA serves.

The two-day seminar was entitled " Sharing the Journey", and again, yes, I like this word of journey. We get to voyage through many new territories, meeting new friends along the way. Sometimes, it is a wild ride paved along boulders of medical bills and claims to file. And for Zoé it is crossing the threshold into a new world. The world of those who can walk and see how great it is not to be crawling, face down.

"From [y]our unique perspective, [you] may have the ability to see the full beauty and diversity of this life." (Michael Bougher), and this is so true for both Zoé, David and I. We have come to realize how amazing this life is, despite its challenges. It has so much to offer.

We were told that this month is "National Family Caregivers Month November 2009" , and I was honored to be applauded by a crowd of people, who recognize how hard the job is, yet, how rewarding.

"Caregiving is one of the most challenging jobs any person can do. It is challenging emotionally, fraught with feelings ranging from guilt to love. It is challenging physically, as you use your body to perform tasks your loved ones can no longer do. It is challenging financially, as you negotiate staggering medical costs and fragmented resources. It is challenging spiritually, as you pursue love and meaning in the face of irrevocable loss". This is what one of the guest speaker said about caregiving.

I realize that for me, things are a bit different. Zoé can do so much, despite me having to carry her around, those days are numbered...for as soon as the serial casting is done, as soon as she is fitted with braces and proper walking shoes, Zoé will be on her way. I don't deny the financial burden, but I have learnt as I spend hours battling the system that"the squeaky wheel gets the oil"and I have now adopted this as my motto.
Spiritually, it is challenging, but I don't feel loss, I have learnt to accept that my life is nothing like I had anticipated it to be. I only feel the loss of not having gone to Italy, but as I mentioned before about the "Welcome to Holland" metaphor, I love The Netherlands! They have made me a better person, I think, a stronger one, and I wouldn't change my journey for anything in the world!

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