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.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Find this story helpful? Share it with someone you care about.

Related to Undiagnosed

For the Mom at Playgroup Whose Child Has Developmental Delays

My lovely 5-year-old son has an undiagnosed genetic condition and global development delay. My oldest girl was only 3 when he arrived so we were already firmly ensconced on the playgroup circuit. She had a little gang – girls and boys she’d one day go to school with – and she looked forward to the twice-weekly activity a lot. No matter how strong I thought I was, how [...]

To the Mom in the Waiting Room Whose Child Is Undiagnosed

I noticed you right away as I walked into the waiting room at the geneticist’s office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was 10 years ago. I could hear you talking excitedly to your husband, who was holding your son in his [...]

To the Parents Searching for a Diagnosis for Their Medically Complex Child

With Rare Disease Day right around the corner, I would like to reach out to those who are undiagnosed. Rare Disease Day is the last day of February every year, and every year, I see tons of profile pictures and lots of great information about different disorders and diseases. What a great month it is [...]

When You’ve Been Bleeding for a Year With No Diagnosis

I’ve had issues with my menstrual cycle off and on for my entire life. Longer periods here, practically non-existent periods there. Nothing too bad. But one year ago everything changed. My cycle was drawn out to awful levels. I was bleeding all the time. It seemed like as one was ending, the next was beginning. [...]