Skip to main content

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 prognosis, 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 that the child you thought you were going to raise 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 that 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 okay. 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 that 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 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.