We take Marissa to see her geneticist one week from today. She hasn't seen her since July 2008. I am hopeful she will not only be surprised at how far Marissa has come but that she will be utterly blown away. Marissa has developed so much in the last year. We left her office last year without a diagnosis and it kind of stung a bit. I have a feeling this year we will leave without a diagnosis again, but I am actually feeling good about it, if not hoping for it. Marissa has shown us that our theories of what diagnosis she might have just don't fit anymore.
For me, the geneticist used to be one of the more important doctors that Marissa saw. Up until about a year ago. I used to have a really hard time with not having a primary diagnosis. I wanted to know why I had such a difficult pregnancy. I wanted to know why I started bleeding and thought I was going to miscarry (again) around 8 weeks; why we had a two-vessel umbilical cord; why she had an enlarged ventricle in her brain discovered at 20 weeks; why her growth slowed significantly around 31 weeks and why she stopped growing altogether around 37 weeks. I wanted answers as to why she was the way she was after she was born. I wanted to know why she had the brain anomaly; the dysmorphic facial features; the airway issues; the heart problem; the GI problems; the kidney problems. I thought if we knew answers, we could know how to help her better.
I realized a while back that we don't necessarily have to know a primary diagnosis to help her. Her heart was fixed without a diagnosis. Her kidney issues were fixed without a diagnosis. Her airway issues will most likely be fixed without a diagnosis. She was recently discharged from physical therapy and will be discharged from occupational therapy next week. She is overcoming her physical disabilities and limitations. And, what she can't overcome, she has shown us she will adapt to and learn to work with.
At least for the time being, I am glad Marissa does not have a diagnosis.
Now, I don't want to offend any of my wonderful friends by what I am going to say next. Please, I mean no offense.
I think that along with some diagnoses might come a tendency to put labels and limits on people. Like, "If we can just squeeze her into this box right here, we will know what her future will hold. We will know how she will develop and grow because people with this diagnosis develop and grow a certain way. We will know how to treat her, not only medically, but as a person". This carries with it the potential to unwittingly clip her wings before she could show if she could fly. I may be wrong, but I have come to believe that diagnoses are for doctors, insurance companies and school officials, not necessarily for parents, family members, friends and schoolmates. Diagnoses shouldn't be for society in general but they do tend to be, unfortunately. Diagnoses allow people to treat someone in a certain way, but not necessarily how that person should be treated.
And in the bigger scheme of things in life, it doesn't really matter. I know Marissa is a child of God and He created her just the way she was supposed to be.
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made.
Psalm 139: 13-14
As a wise and kind preacher from my youth (who just happens to be my Dad) demonstrated for me with a sign hanging on his office wall,
"I know I'm somebody, 'cause God don't make no junk".