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To the Next Doctor Who Says 'I Don't Know' When I Ask About My Son


One of the most difficult parts for me about my son’s condition is not having a diagnosis, not having a name to Google. If only I had a name, I could take the bull by the horns and not feel so helpless.

So with each new doctor’s appointment, my heart fills with hope that this time, this doctor will be able to answer my questions. And yet, we are still searching for that doctor six months later. You see, when you don’t have answers, your hope hangs on possibilities.

I understand that if you don’t know the answers, you don’t know. You don’t know what his quality of life will be. If he will ever be an oral feeder. If he will be able to walk. If he will be able to take basic care of himself or be able to live independently.

But every time I am told “I don’t know,” my heart breaks all over again. I go through the stages of grief, all over again. You can’t live the life of parenting without having hope, and every time it shatters, my heart breaks all over again.

The next doctor who has to tell me, “I don’t know,” please tell me this instead:

Your son is so stubbornly unique, we can’t answer those questions right now.

But we can tell you a few other things:

No one can love your son the way you and your husband do. He was given the best possible parents to fight for him.

He will teach you to be the best versions of yourselves that you can possibly be.

Your life might be difficult at times. However, just like Newton’s law, for every action there is an equal and opposite reaction: the rewards will be that much more exhilarating, meaningful, exciting and joyful.

He is not the sum of his deficits. He has beauty in him that so many others don’t have.

You will bear witness to miracles happening every day. Few parents get to experience the pride that comes with that.

He will still have quirks and things about him that make you fall in love with him more every day — just like any other child.

Your other children are watching you — and simultaneously taking notes to learn how to face the challenges of the condition just like you are.

He’s different, yes. But no diagnosis you may find will tell you that he is any less.

Lastly, you are not alone. He has an entire team of professionals fighting for him right alongside you, as well as a family full of love for him, just like you.

Please, doctors of my son, be the positive my children need me to be. So often you underestimate the power of your words. You can inspire or dash hope in a matter of seconds. These simple statements would make it so much easier to come home to our family without any answers, again.

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