Reflections of an MTM mother...
My daughter has begun writing a blog that reflects on being a sibling of a MTM child. Reading her blog has been both enlightening and heart breaking. Raising a child with Myotubular Myopathy is like parenting in an alternate universe. When there are other children in the family, their childhoods alter course and begin on this new strange road where everything is about someone else.
My children are my heart...like every parent, each decision is made hoping that all will benefit. When life is determined by hospital visits and nursing hours, it can make having a "regular life" a challenge.
Our older three children are all adults. Each of them have been impacted by the cutest boy in different ways. I haven't heard all of their stories...I hope at some time they will feel comfortable sharing, but I do know that each and every one of them has been impacted...their lives altered in some way.
As I walk this path and become a resource for other parents, I hope that our experiences can help other's lives. There are many other children, siblings whose lives are walking this altered path. Even with new research on the forefront and potential treatments and/or cures in the future...these children's childhoods will never be the same. An element of the other shoe dropping, waiting or being prepared for a quick bend in the road is ever present.
Regular parenting is like driving a freeway...there are many exits and paths. You don't know which is the best exit (and some will be horrible with roads that are ruts and pot holes galore), but ultimately you are moving towards a path.
Parenting an MTM child is different...your life is about opportunities for your child to participate, making sure that things are accessible, pacing energy, and talking to others. Having play groups and resources that are across the country rather than in your neighborhood and being an expert in a disease that was once foreign.
There is no manual that prepares you for any sort of parenting, but unlike regular parenting where your primary concern is your child, parenting an MTM child means that you not only worry al the time, but you have to worry about life, death, and hoping that your other children don't perseverate on those things too.
To read my daughter's amazing blog go to The One that Walked...