After Your Child's Diagnosis, Fill Your World With This


Dear Parent,

We haven’t met before, but it is nice to meet you. Perhaps you landed here after frantically scouring the Internet for more information. You may have already clicked on pictures that took your breath away, found support groups to join, or landed on the “Welcome to Holland” poem that may temporarily help, but what is next?

Our children may be nothing alike. They may not share any of the same prognoses, concerns, or forecast for the years to come. We may not have the same political beliefs,  parenting philosophies, or even live in the same part of the world. But I know what it is like to be told the child you are raising is going to develop on a very different path. Perhaps I may be able to help.

I remember our day.

I cried. And cried.

I had to pull the car over because I was worried about driving home through so many tears.

Yet, when I looked into the rear view mirror, I saw my child looking at me, and she was laughing.

I presume she thought mommy looked very silly. Why was I making all those ugly faces and replacing my usual habit of singing to the radio with this wailing? It was then I realized she is exactly the same. The chubby-faced baby I carried into the doctor’s office is the same one who came out. She would still need dinner when we got home and curl up on my lap to read “You Are My I Love You” before bedtime. I couldn’t be sure of what next week would look like or next month, but in that moment, when my greatest fears were realized, I just needed to look at her.

There will be many steps to follow, but for tonight, kiss your child and put him or her to bed.

Then start filling your world.

Fill it with only the most supportive people who don’t make you think twice about what you can give them. It took me a good year before I could even begin to be a good friend again, but they will hang in. They may send take-out, jellybeans, bring over a movie while you sleep during it, but they will be there. They will have no idea what to say to you. That is OK. They are just there. And that is enough.

Fill it with some frozen meals. Cooking will not seem so practical in the first few days and you want to make sure you still eat.

Fill it with experts. Find the people who can help you learn how to best advocate for your child.

You can do this. I am not one to tell you, you have been given this test to prove your strength, or there is a higher power involved, although many find comfort in these words. I am simply a mom that wants to extend some kindness to tell you – you can do this.

You will realize that with each day, you will learn more and become a stronger advocate than you ever realized you could be. It will not be an easy road, but it is never one you will have to do alone.

There are many of us out here. We are in all different stages of processing our children’s diagnoses, and continue to learn from one another.

Tonight, however I would just recommend some Netflix and holding your child – you can start filling your world tomorrow.

Follow this journey on The Cheese Bus

We want to hear your story. Become a Mighty contributor here.


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


Related to Rare Disease

Couple pointing to blueprints

A Diagnosis Gives Us a Guidebook

My son was diagnosed today. Our son’s second home was the Children’s Hospital before he was even born. Due to a number of his anomalies, specialties were a part of his birth history, one being Genetics. There’s nothing like a doctor coming in and picking apart all that is “wrong” with what they see with your child [...]
pituitry cartoon

A Non-Scientist's Guide to Hypopituritsm

Sometimes when I tell people what my daughter Molly has, they look at me blankly. They appear almost scared, like the strange word sounds too complicated to even think about it means. That in and of itself makes me think, “Here we go again…” When I start to explain, I wait for the, “I wish I never [...]
young fitness woman runner running on road

Why I'm Running for Rare in the New York City Marathon

Kate. One of the questions I find myself constantly answering is, “Why would you run that far? I’d rather be sleeping!” I’m usually responding to someone who does not understand how much time and effort it takes during marathon training to wake up every Sunday morning and run 12 – 20 miles. Nevertheless, you’re guaranteed at [...]
Arianna in the hospital w/ a therapy dog

How My Misdiagnoses Almost Led to My Death

On my 22nd birthday, a surgeon told me I had six weeks to live. In response to his statement, his somber face and his outstretched hand across my hospital bed, I burst into laughter. “Doc”, I said incredulously, “There’s no way I’m dying. I’m a vegan.” The doctor stared back at me, a slightly bemused [...]