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Why I Stopped Praying For a Diagnosis For My Daughter

Can you imagine someone praying for a diagnosis day? Someone who has spent years surfing the Internet for some clue that could lead to a diagnosis day. Someone who has waited by the phone hoping that this blood sample is going to be the final piece of the puzzle leading to a diagnosis day. Someone who has picked up the phone too many times to count, only to hear those words, “all the tests came back normal.” Great news, right? Wrong!

I have spent more time than I care to share searching for an answer. I want to know the name of the monster that took away my daughter’s abilities to walk, talk, eat enough calories to sustain life, to look me in the eye, to chase her little brother and sister around the yard and to say, “I love you, Mommy.” I want to fight for a cure. I want to have the slightest hope for a cure. I want to meet someone who is just like my daughter and wrap my arms around that child’s mommy because we are bonded before we even speak a word.

But that is not the path for our family. Now that my daughter is 11 years old, I have accepted the fact that we will likely never have a diagnosis. But for the first five years of her life, the questions consumed me. I thought answers would change something. Now I know we are exactly where God wants us. I believe God gives everyone exactly what they need. Some get a diagnosis because they will be the one who change the course of that disease. Others use the diagnosis to show the world the tiny miracles it brings. And others don’t get a diagnosis because God has a different job for them.

Even without a diagnosis, my daughter is still perfect in every way. A diagnosis would not change the way I feel about her. It may even hinder our dreams for her. Maybe we wouldn’t push her as much because that diagnosis told us there was no use. A diagnosis wouldn’t stop the seizures or take away the feeding tube. It wouldn’t stop the pain of watching her suffer and it certainly wouldn’t make our family normal. And a diagnosis may take me away from doing the one thing I finally feel called by God to do: write.

This past year I finally started sharing my daughter’s precious life. I write about how this horrible unforeseen tragedy has brought me closer to God. And how the horrible unforeseen tragedy is actually a blessing, a blessing that has flipped me around and turned me inside out into a different person. A person I really like. By writing, I hope to do my part in this world of horrible unforeseen tragedies.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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