Lydias diagnoses of Dandy-Walker syndrome and hypotonic CP do not take center stage in our days together. I remember when we received answers, and how those medical terms took my breath away. I immediately thought that our lives would revolve around them. How wrong I was friends. I forget all the time. I forget that other 3 year olds words come out clear as they sing Twinkle Twinkle and read along to nursery rhymes. I just hear the musical sounds of Lydia,(with very good timing and intonation I might add) and it is my normal. I kiss her soft, creamy forehead after we say our prayers at night and centimeters away her malformed brain, which is possibly even missing some important functional areas, and my fear is dormant, forgotten. I watch her walk happily in front of, behind, beside me and I see my beautiful little girl: one who loves life, her people, animals, learning, playing, dressing up pretty and screaming NO just because she wants to. I see Lydia. I see our normal. I wish I could say that I never have to worry about her diagnoses. Of course I do, especially when reminded by all of the doctors appointments, weekly therapies, IEP meetings, special needs trust/estate planning seminars, fears about me and Eriks health, a 3 year old in diapers, and terrifying genetic testing. I am well aware that my sweet baby could have a seizure at any time. She is at risk for them because of her diagnosis. Her precious head will need to be monitored for hydrocephalus(water on the brain/build up of fluid). I am aware that she may need a wheelchair at some point in the future and I am aware that she may always need my care, but I can promise you that these are not the thoughts of my daily life. Our life is full of joy! We are living in the present. Her diagnoses are quite loud when I see Lydia around typical 3 and 4 year olds. Comparison tries to steal my joy. What do I do? I breath in. I smile. I look at my girl and I see my normal. I see beauty and Gods pure love.
Posted on: Fri, 19 Sep 2014 01:14:19 +0000