Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.

 

The Alternative

We are not required to participate in the Duchenne medical complex. We could refuse testing. We could refuse physical therapy, swim therapy, stretching. We could refuse to participate in clinical studies and trials. We could refuse medications. We could refuse to send our sons to school. We could decide not to use technologies and gear. We could refuse to get our son a wheelchair. We could refuse to use a cough assist machine or BiPap or oxygen.

 

We could say no. That is always an option. But if we do, we must be prepared to suffer the inevitable consequences.

 

If we decline to use the medical tools that are available to us, we are making the decision to stay in bed and hide under the covers until the fast-approaching end. It is an alternative that is always available to us, yet it is totally unacceptable. We cannot just sit around and wait for death. We must strive, we must work, we must buy in, and self educate and self advocate and participate, if we want to give our children the life that they deserve. We gave these babies the gift of life in the first place (or we adopted them to give them a chance at a better life). We cannot abandon them now that they are ours. We must fight against the tide of Duchenne.

 

There are current and well considered guidelines for improving both the quality and the quantity of life with Duchenne.

 

But it isn't easy. There are always trade-offs and consequences. These are some things I have to tell my six year old:

  • "No, we cannot stay after school to play with your friends today because we have to take you to another therapy/doctor's appointment today instead."
  • "I know that you are afraid to go to the hospital and get hooked up to wires and stay there the whole night long, but we have to find out what is going on with your body while you sleep."
  • "I'm sorry that you are tired and grumpy and want to go home. We can't because we have to go to another therapy/doctor's appointment."
  • "I also wish we could be playing outside on this beautiful day but we can't because we have to go to another therapy/doctor's appointment right after school."
  • "You will just have to wear that stained/old/non-preferred shirt at the bottom of your drawer today because I haven't had a chance to do laundry yet since we are always in the car driving to another therapy/doctor's appointment."

 

Often these statements are accompanied by tears, and not only those of a six year old.

 

I wish that I could wave my magic wand and make Duchenne go away. Even if it just went away on vacation for a few days. If wishes were horses then beggars would ride.

 

We will do what we always do. We will struggle and balance and work to live a life that meets our needs. Some days it will mean more therapies, more doctors’ appointments, more gear, more wires, more tools. Some days it will mean more fresh air outside, more play time, more time spent at 2 o'clock in the afternoon in our pajamas surrounded by Legos. It isn't a pretty life. It isn't ideal. Needs of one kind and another will always slip through the cracks. But it is a life. And we are not willing to accept the alternative without a fight.

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