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
Saturday, July 26, 2008
Friday, July 25, 2008
Finding out; the begining of a new journey
I never really thought about when my life would start. I thought, well, I am living, so my life is started. Little did I know.
Three weeks ago our six year old son Mathieu was diagnosed with Duchenne Muscular Dystrophy. We have another son, who may have the disease as well.
Our world seems to be falling apart right know.
This is my first blog, and I seem to have so much to say, I am scatter brain, still, after three weeks of knowing that I have one very sick child and potentially a second.....I am exhausted with grief.
I am a writer. So I figure I should write.
Write what I am feeling, what I am living.
He was a preemie baby, Mathieu.
He was about 2 years old when he finally let go of the chair and walked off by himself.
We sent him for x-rays to check his back and his legs, MRI's to check his brain. Everything was fine. "He has a wonderful physique," the doctor said, "why are you worrying?"
School came, and Mathieu seemed to fit right in with all of the other kids. He was having trouble with his mini motor skills in the beginning, but that seemed to settle itself. Then trouble with major motor skills. But again, everything fine. He played soccer, and okay, he wasn’t the fastest, or the most agile, but what the heck it was kids soccer. He played hockey, swam, wrestled, ran. Everything…just a little slower.
It wasn't until we moved to Ottawa, that things would change so much more than we thought.
I had it all planned for when we moved here. We finally had a family doctor, after living in Kapuskasing without a family physician for four years. We saw a posting for an Orleans physician accepting new patients.
Dr. Mobayed accepted us right away.
His little office in the back of his house, Johanne, his wife, the office manager greeted us. We felt part of the family right away. Dr. Mobayed noticed the way Mathieu walked into the room and said that it looked like he may be suffering from some muscle weakness and referred us right away to Dr. Doja and Dr. Jacob, neurologists at the Children’s Hospital of Eastern Ontario (CHEO).
It was a long six weeks, waiting for the results. Anxiety, fear, sadness, guilt. My husband and I thought, okay, how could this happen. I have cousins that are body builders, boys all throughout the family tree, perfectly healthy. Not one relative has ever mentioned muscle weakness, or stiffness, or anything.
The internet severed us as a useful tool in the beginning. Then it was our nightmare. So much information. So much stuff that we had no idea about, or even thought about. Scared of knowing what was happening to our baby.
I lay crying in my husbands arms night after night, fearing the worst, what was to come of all of this.
It was like in a movie. When we found out.
Dr. Doja confirmed my worst fear. All I heard was Duchenne Muscular Dystrophy. My head fell in my hands and I sobbed. I almost threw myself on the ground to stop the pain, I wanted to throw myself at the doctor to hold his mouth shut and say “How dare you say that about my son,“. My husband held me as I sobbed. I sobbed so much I thought I was going to die. Right there in front of the nurse and social worker. It hurts so bad.
It’s been three weeks. I didn’t think I would make it through that day. With the help of my husband James, my sister Tina, my best friend Terri, my grandmother and of all people, my new neighbor Tanya that I am staying strong. They let me lean on them, and they cry with me.
I will write again soon.
We find out next week about Malaky, our youngest. I feel sick about all of it.
Marian
Three weeks ago our six year old son Mathieu was diagnosed with Duchenne Muscular Dystrophy. We have another son, who may have the disease as well.
Our world seems to be falling apart right know.
This is my first blog, and I seem to have so much to say, I am scatter brain, still, after three weeks of knowing that I have one very sick child and potentially a second.....I am exhausted with grief.
I am a writer. So I figure I should write.
Write what I am feeling, what I am living.
He was a preemie baby, Mathieu.
He was about 2 years old when he finally let go of the chair and walked off by himself.
We sent him for x-rays to check his back and his legs, MRI's to check his brain. Everything was fine. "He has a wonderful physique," the doctor said, "why are you worrying?"
School came, and Mathieu seemed to fit right in with all of the other kids. He was having trouble with his mini motor skills in the beginning, but that seemed to settle itself. Then trouble with major motor skills. But again, everything fine. He played soccer, and okay, he wasn’t the fastest, or the most agile, but what the heck it was kids soccer. He played hockey, swam, wrestled, ran. Everything…just a little slower.
It wasn't until we moved to Ottawa, that things would change so much more than we thought.
I had it all planned for when we moved here. We finally had a family doctor, after living in Kapuskasing without a family physician for four years. We saw a posting for an Orleans physician accepting new patients.
Dr. Mobayed accepted us right away.
His little office in the back of his house, Johanne, his wife, the office manager greeted us. We felt part of the family right away. Dr. Mobayed noticed the way Mathieu walked into the room and said that it looked like he may be suffering from some muscle weakness and referred us right away to Dr. Doja and Dr. Jacob, neurologists at the Children’s Hospital of Eastern Ontario (CHEO).
It was a long six weeks, waiting for the results. Anxiety, fear, sadness, guilt. My husband and I thought, okay, how could this happen. I have cousins that are body builders, boys all throughout the family tree, perfectly healthy. Not one relative has ever mentioned muscle weakness, or stiffness, or anything.
The internet severed us as a useful tool in the beginning. Then it was our nightmare. So much information. So much stuff that we had no idea about, or even thought about. Scared of knowing what was happening to our baby.
I lay crying in my husbands arms night after night, fearing the worst, what was to come of all of this.
It was like in a movie. When we found out.
Dr. Doja confirmed my worst fear. All I heard was Duchenne Muscular Dystrophy. My head fell in my hands and I sobbed. I almost threw myself on the ground to stop the pain, I wanted to throw myself at the doctor to hold his mouth shut and say “How dare you say that about my son,“. My husband held me as I sobbed. I sobbed so much I thought I was going to die. Right there in front of the nurse and social worker. It hurts so bad.
It’s been three weeks. I didn’t think I would make it through that day. With the help of my husband James, my sister Tina, my best friend Terri, my grandmother and of all people, my new neighbor Tanya that I am staying strong. They let me lean on them, and they cry with me.
I will write again soon.
We find out next week about Malaky, our youngest. I feel sick about all of it.
Marian
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