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Saturday, April 2, 2011

Team,Why not?

I always write about our experiences with Adoption, different special needs and having a larger family. I have experiences with many different elements that I haven't touched base on. My family suffers from MS. (Multiple Sclerosis) Multiple Sclerosis is a disabling disease of the central nervous system, which is the brain and spinal cord. They say it's not hereditary although there is genetic influences. A little history, my first Uncle, my first cousin and my sister has Multiple Sclerosis. When I was growing up I never understood why my Uncle was the way he was. I wasn't educated about MS until my little Sister was diagnosed. The central nervous system controls much of the body's functioning. Depending on how you're affected, where the MS is basically attacking your brain will depend on what function of your body is compromised. For me to completely understand the damage MS does, I had to be told that it's like having termites chomping in different sections of your brain. Once eaten, there's no repair. Depending on what section MS is attacking it can affect the visual, Motor, Sensory, Coordination and Balance, Bowel, Bladder, Sexually and Cognitively. For me, as a close family member I honestly behave like there's nothing wrong but family members are affected by this decease too. My only sister lives literally five minutes away and we hardly see each other. I know she wants to be an Aunty to all our children, she is......but her MS keeps her away. My cousin is thirty minutes away, she loves children and her family.....but her MS keeps her away. My Uncle only an hour and a half away, a lovely man he's been that I've remembered....but his MS keeps him away. All three of my family members that can't handle crowds, loud noises and bright lights can't come to our home. If they do, it's time framed. From the time I can remember my Uncle walked with an interesting style. Talked slowly with a slur. When I was young and not educated about Multiple Sclerosis, I thought my Uncle suffered from being Mentally Challenged. I didn't understand or know the difference. At times growing up I thought there was a secret. Now of course I understand but why not educate me when I was younger? Why does a decease have to be hidden? With our children I believe in communication. Even if it's not positive because sometimes the truth is preparation. Now I understand. Even understanding hurts because I have a large, louder crowded family that especially my sister is missing out on. AND it's not my sister's fault. Most of our children will not know their Aunty like I do. That's what Multiple Sclerosis is taking away from us. Away from my sister. The only thing I can do is educate our children why. These lesions that can be located either on your brain or your spinal cord (depending where they are) depends on your ability to function. Right now most days my sister, my Cousin and my Uncle are physically mobile but every day is unknown. Mostly I believe my sister is affected with her sensory abilities which doesn't make mobility helpful when she can't be in the same room as noise or bright lights. That's why our family isn't the best place to be. For our family I believe this decease has taken away relationships and has changed everything for what it could have been. I often wonder if my family members that have Multiple Sclerosis understands that it's not me, not our family that seem distant but it's our understanding that we're TOO much. Too much meaning adding too much for their MS. AND it's O.K. because we love you anyways. Multiple Sclerosis is a crippling decease physically, mentally, socially and can change families like ours forever. April 17th is the MS walk, a fundraiser event that our family is a part of, we're collecting pledges for and our team is called "Team, Why not?" If you're interested in helping with this cause, please contact me. Mostly I wrote this post because it's been a huge part of my life, an ONGOING huge part of my life because it's people I love, people that our children love are affected and if not anything, education is the key to any decease. One thing I believe is, if we can't cure it, learn so you can live with it. For my family members living daily with all the unknowns, I truly do understand and so do our children. GO Team Why Not!?

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