Decisions

I saw something yesterday that made me cry. A story about a family seeking advice from a mother of a child with Down Syndrome. They had received a prenatal diagnosis and were considering abortion. This mother, who had been reached out to, was trying to figure out the best way to put the joy her children (she has two children with Down Syndrome, one adopted) have given her into words. A difficult task. To not pass judgment, to not be angry, but to put the importance of a life into words in an email. Time and time again I have looked back at myself when I received Ellie’s diagnosis, I have remembered the look of fear on my face, and I wish I could shake myself. I wish I could stand in that hospital room and scream at me. I never once considered abortion when there was a possible marker for Down Syndrome at Ellie’s first ultrasound and I never considered giving her up when the doctors told me she had Down Syndrome at her birth, but I was scared, and I was sad. Now, with the power and knowledge I have, looking back, I feel saddened by my fear. Because Ellie is the best thing that ever happened to us, she is the furthest thing from fear and sadness. But how would I express this to a parent who is pregnant and heartbroken? There are a lot of amazing doctors in this world and I am truly lucky to have had wonderful doctors in our lives, but there are some, who can cast a shadow on a diagnosis, who can present medical facts and forget that with a heart defect comes strength, with low muscle tone comes drive, with almond eyes comes grace and joy and a ferocity for life I have never experienced before, and Ellie is only 15 months years old. The fact that decisions like this present themselves all over the world every day makes me cry. It breaks my heart. I have no judgment, I am not in these people’s lives, but knowledge is power and a disability diagnosis should not be the end, of anything. On Friday night I met a wonderful family who has a daughter with brittle bone disease. We immediately connected on a shared life of doctors and decisions. We happen to have all of the same therapists. As the night wore on we delved into the depths and shared those feelings we had on our child’s birth day, sad feelings we wish we could take back on such a special day but were part of our journey nonetheless. Before their daughter was born, their doctors had told them to abort their baby girl, but they resisted. No one sent them an email, no one told them what to do, it was a feeling in their hearts that they needed to meet their girl. Her name is Anne Marie and she is almost two years old and when I met her she was wearing a beautiful pink dress and scooting across the floor. She is strong and sweet and a fighter who deserves her life. If someone approached me with such a question I don’t know how an email reply could describe what Ellie has done for us. And to be placed with that responsibility is a difficult situation to be in. If I had an endless bank account I would fly to them and show them Ellie, and the belief I have in her power, would be all they needed to understand the words, a blessing not a burden. But I don’t know these people, I’ve only heard a story, so I have to believe their child is already sending them messages. One can hope. Someday the mystery behind special needs will be lifted. Children will grow up going to class with other children with Down Syndrome. They will be their classmates, their friends, and these children will know that differences only make our society stronger. In my daughter’s lifetime, knowledge will break fear. I know it.

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