For a long time I've been considering creating a blog about our family. For a long time, I was really lazy when it came to the idea of taking on that task. However, I really enjoy talking about my family, and there is so much I want to share with the world.
We are alot like The Brady Bunch. We have a dad, who came with two children of his own. And a mom who came with three children of her own. Most of my Stories will probably be about Spencer, who is my wonderful 8 year old step-son who happens to have Duchennes Muscular Dystrophy. You will probably understand why once I get a few blog posts under my belt. Spencer's personality is magnetic and he brings magic with him wherever he goes. My other children are getting older and with age comes independence. Spencer will never have that level of independence, therefore his days are always my days.
DMD is a recessive x-lined form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and eventual death. It is caused by a mutation in the dystrophin gene, which is located on the human x chromosome. This gene codes for the protein dystrophin which is an important structural component in muscle tissue that provides stability to the cell membrane. Both males and females can carry the mutation, although females rarely exhibit signs of the disease. Symptoms usually appear by age 5 and begin with muscle weakness in the legs and pelvis. This then will spread to the arms, neck, and other areas. As DMD gets worse, the muscle tissue wastes away and is eventually replaced by fat and fibrotic tissue. Generally, by age 10, braces may be required to aid in walking, and most patients are wheelchair dependent by age 12. Beyond that, symptoms may include abnormal bone development which can lead to skeletal deformities. (Such as Scoliosis.) Due to this continual deterioration of muscle, loss of movement later occurs, eventually leading to paralysis. Some children, like Spencer, also have some intellectual impairment from the disease, which does not get progressively worse as the disease progresses. The average life expectancy for children with DMD is around 25 years. Luckily, with advances in technology, this number can only go up.
Spencer is currently 8 years old, and about to go into the second grade. He has had the same wonderful teacher for the past three years, and we hope to keep her for quite some time to come. Spencer and Madi's biological mom passed away four years ago from breast cancer, and Spencer, due to his mental capacity and age, likely doesn't remember her. Madi, however, struggles some with her mothers death. I'm sure any young girl would. Life is not always fair, even to children.
My other children have had their own share of medical issues. Madison is a childhood cancer survivor (he was diagnosed at age two, and is now cancer free), Morgan has Juvenille Arthritis, and both Madison and Aspen have Von Willebrand's Disease (a bleeding disorder.)
All five children are uniquely amazing.
Who's Who: Mom Debbie, Dad Mike, Sister Morgan (17), Brother Madison (13), Sister Madi (12), Sister Aspen (11), and little brother Spencer (8).
What Is Everyone Like? Mom (that's me!) stays at home with the kiddos. I wish I could say this makes my house immaculate, but actually its the fact that my husband likes to clean that does that. I would rather spend my time playing with Spencer or reading. :-) Dad is about to retire from the United States Navy after 20 years of service. He starts college in less than 30 days. That makes him about to be unemployed. I'm sure he plans to work on that. :-) Morgan is about to graduate high school, one year early. Four years of taking summer school gave her the credits she needs to get out of there and start college...yes, two freshmen in one house. It's like a big frat party. She's blonde and she was a high school cheerleader. That should just about sum up her personality for you. :-) Madison (a boy!) is the intellectual genius. Although he gets honor roll grades, at the moment he chooses to spend his intelligence mastering the x-box. He's also a human hard drive. Any data that goes in, gets stored and spit back at you at random moments. He's usually never wrong. :-) Madi likes to sing and plans to be famous. Unfortuneately, we are hindering her dream as we do not live in LA or New York, and have yet managed to land her a recording contract. I also believe, from monitoring her facebook page, that she dabbles in hair tutorials. There could be a career in cosmetology there. :-) Aspen cannot be described in mere sentences. Maybe random words. Fireworks. Peanut butter sandwiches. Skateboards. Manipulator. Oh...and she likes Star Wars. :-) Spencer....Well he's already famous in our town. And my blog is bringing him to a town near you. :-)
Do the kids know you are blogging about them? No. But they are on the internet and they may google themselves periodically. It may pop up. They MAY become contributing editors. Spencer of course will probably figure it out. He usually has a hand in everything. He will probably want to hand out business cards with the url on them.
Is there a cure for DMD? No. Not yet. But I'm a believer.
How did you all become a family? Pure Luck. And destiny. Although we didn't get it right the first time. But then again, we weren't meant to...there wouldn't have been a "tribe" for me to blog about. Mike and I were 5 when we met. Or I was 5. He was 4. My parents built a house across the road from him. Everyday for years we played together. We got on the bus together. We went to the same high school together. And that is where that story ends. We never held hands. We never kissed behind the house. We never even thought about going on a date. We each moved on in different directions. Almost 20 years later, we reconnected on facebook. Still living in the same state, yet four hours apart. Each of us miserable, each of us alone. And then we weren't. It took us 5 months from first date to marriage. I moved to the beach to live with my family. We became a family of 7. (Ten if you count one dog and two cats.) We've never been happier. I don't know why we didn't do this when we were 18. But again...I do. We needed the tribe. Just as they are.
Can I email you? Absolutely! email@example.com