Our day today started out like most Saturday and Sunday mornings. We hear Malaky start to Jabber and squawk…we hear Mathieu make his way into the bathroom, then go into his baby brothers room to turn on the television. No doubt trying to keep him quiet so he can come and crawl into our already, too small Queen bed and wake us up. It seems to be his favorite place, between his two favorite people.
He is gone with Stephane, his biological father, as he does every other month, for a night. He likes to sleep in his bed though, so it is usually a tough sell for him to spend the night away from home. But as always we try and explain to Mathieu that it is the right thing to do, to spend time with him, even though he wants differently, now is not the time to start letting him make the rules.
As my husband says, he still has to be raised, and we have to raise him as hard as it is right now to keep discipline and structure, we wouldn’t be doing him any favors if we didn’t.
James told Stephane the news when we first found out. James is more articulate when it comes to speaking with certain people. Maybe it was my responsibility to talk to Mathieu‘s father. But right now, and especially then, I am just trying to get the words out of my mouth without falling apart.
Our family is now part of Muscular Dystrophy Canada, so I suggest visiting www.muscle.ca for all information on the disease.
The doctors told me I may be a carrier. If I am a carrier it means Malaky has a 50 50 chance of being positive.
One third of all cases of Muscular Dystrophy are spontaneous, which means not genetically passed. I hope to God this is the case. If I am a carrier of the mutated gene, my sister will need to be tested, then her girls…It may begin this web of investigation into my ancestry to find out the pedigree of my family.
The doctors say that it is usually the family that stumbles onto something, a new treatment or medicine or anything that may help find a treatment or possibly a cure. Please let me know. I will post here events that are happening in your area. Please read about Duchenne Muscular Dystrophy in the meantime and if you have any questions please let me know.
I will post again soon.
Marian
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5 comments:
Marian,
I am very proud of you for speaking out. You are giving your emotions a voice and I have a feeling that doing what you do best, writing, will help you cope. You are a great person and Mathieu is in the right hands. We are all here for you, we will pray, we will hope, and most of all we will live every day to it's fullest!!
I love you, Mathieu, Malaky and James. With all of the love that surrounds your precious little boy, we will all be there for him on this journey.
Your sister who loves you very much, Tina. XOX
Marian,
It sometimes is hard to put feelings into words, so this is my second attempt! It has been one month since you welcomed me into the neighbourhood. They say people are put into our lives for a higher purpose, you have made me a believer. Mathiue has become my wake up call every morning on his 4-wheeler, He has become a long distant "boyfriend" to my daughter Emily. Malaky, with his beautiful smile and awesome temperament. James is just simply a great guy. Marian, you are an incredible friend,wife and amazing mother! I cherish your friendship, you inspire me. From ten steps away, to a wave from our windows, to a shout "Mama" from our yard's!If anything you have made me a better person. I am here for you.
Your friend, Tanya.
Marian...
This is so nice of you to be able to speak out and to let go of your emotions.....
Me and Gaston are very proud and happy to be Mathieu God Parents....
We will always be there for you all....
Love you...
Hug and kisses...
Ma tante Diane...
Marian:
Bravo for the wonderful "blog" you've created. You have the gift of words and I admire your strength.
Please know that you are in our thoughts and prayers.
Félicitations pour ton courage.
We love you very much. Give all your boys a big hug for us.
Love.
Bob & Carole XXOOXX
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