A Letter to the New Mom Facing a Bewildering Diagnosis


Dear Past Self,

Seventeen years ago after three years of searching for answers, your son was given a diagnosis of Ring 22 syndrome and autism. Ring 22 is considered a rare disorder, and at the time of his diagnosis, not even the geneticist had ever met anyone with it. In fact, they wanted to use your son for information and research.

I remember that day well, the day of diagnosis. You had been getting test results back, and as each one came back OK, you thought to yourself, “This is just a developmental bump in the road, maybe he is really OK.” Then on the last day — the day you thought you were home free — the neurologist handed you the sheet of paper showing the diagnosis of Ring 22 syndrome, a spontaneous mutation, a rare occurrence.

You did not take it well. You became sad and disheartened, and there were many tears, perhaps even some depression. You were desperate for information and desperate to know what the future would hold for your son and your family.

I wish I could have shown you the crystal ball; I wish I could have told you then and that you would have believed me — it was all going to be OK. Not always easy, but OK. I wish I could have told you that through all of the pain and heartache there would also be moments of great joy and untold blessings that you never thought would come your way. Would you have believed that you would laugh again, that you would have fun and enjoy life? Would you have believed me then that you would find strength that you never knew you had? Would you have believed that your career, many of your friends and the life you lived would be a beautiful outcome of what seemed to be the most horrific day of your life? Would you have believed that it would make your entire family stronger? That it would give your daughter strength and determination and motivation? That it would have an affect on her career choices, her ability to interact with those with differing abilities and also bring her to some of the most important people in her life?

I wish I could have shown you then and I wish you would have believed me  — that through it all you would enjoy a most amazing journey with your family.

As you read this seventeen years later, you now know what I did all along. You are a force to be reckoned with; you are stronger and more capable then you ever imagined. There were times you thought you could never do it, but you just had to look at your son and feel the love in your heart and you did it… and you will continue to do it. You did not realize it then, but I know you know now that no diagnosis or label will ever take precedent over the label he was given on the day of his birth: son. Keep up the good work!

XO,

Your Very Intuitive Future Self

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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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