The First Few Days After Meeting the Neuromuscular Specialist

After I left the neuromuscular specialist, I had so many questions.  I was overwhelmed.  Since I believed that I could not ask these questions of the new doctor, I turned to the primary care physician.  His office listened to my question with due consideration, and gave an insightful answer.  He disagreed with her assessment of how the boys are doing, and trusts whatever decision I may make.  Then, I had more questions, and spent the next few days asking them of the others.  I didn't set up loaded questions.  Instead, I presented it as, "The appointment didn't go as we expected.  I didn't get to ask questions.  Here's my question for you."  Even though I asked different questions of each professional, I received the same responses from all of them.  None of them agreed with the neuromuscular specialist; all of them agreed with each other independent of each other.  My most serious concern with her was that she was not taking into account each boy's other - and primary - diagnosis.  She was considering their condition as if whichever muscular disorder they have is their primary diagnosis, and the cause of all their symptoms.  This cannot be true, and all of the other professionals agree.

I spent the first week in despair, crying off and on, convinced that my children would not grow up.  Now I know that is a possibility which we cannot rule out now.  After the fourth professional disagreeing with her, and a week to emotionally process the situation, I came to a place of acceptance - not denial nor defiance.  My children's condition is whatever it is.  It cannot be changed or cured.  Whichever disorder it is, it is serious.  However, no one will be able to tell us what it means to have these particular combinations.  No one will have seen this before.  The only one who can be confident in this scenario is me, because I am their mother and I love them.  They are not my patients.  They are my children.  It's time to shift from a medical focus, to a family focus in our plan of care.  It's time to prioritize our quality of life, over maximizing their future potential.  It's time to scale back from over twenty professionals giving their input and scheduling our appointments.  It won't be wrong to do so.  No matter if their time is short, or if their lives will be long, the children will not be short changed from living a family life in childhood.  Most children do, and my children deserve that more than others.  While a medical model is great for kids who are going to grow up, and only be independent if their families make that adjustment in childhood.  Since no one can tell us what our future holds, we need to make the decisions that will keep us together, happy and being ourselves.  Our children will do well and lead independent lives on their own terms, or they will live out whatever time they have in a loving home.