To the Mom Who Just Heard Those Words From the Doctor

Dear mama of a child with special needs,

I know how crazy this journey can get when you first get a diagnosis. I’ve been there myself. I felt all the feelings taking over you now. It’s all so overwhelming, trying to understand and wondering why.

The first time you hear those words from your doctor, it feels like your world is shattered. Then comes the grieving: Grieving for the life you had planned for your child. Grieving for the unknown future. You cry, often hiding yourself to let it all out because you don’t want anyone else to see how hurt you are.

You hear things from your doctors, such as she may not walk, she will need therapy, she will never be independent, she will never talk… I’ve been there too; I heard it all. I felt ashamed for feeling bad, and I was scared no one would understand what I felt. I looked at her and wondered what her life would be like. Who will care for her when I’m no longer in this world? Will society accept her when I’m having a hard time accepting her differences? Will she get married someday? I wondered if I could do it. I wondered if I had the strength in me.

Then you reach a point where you want to tell everyone close to you what’s going on with your child. Why you’ve been distant, why you’re not introducing your baby to everyone, why you’re not hanging out anymore. They don’t know you’re between doctors appointments, or in a hospital holding your child tiny hands and praying things will get better. Then you’re dealing with insurance or in therapy with your child, and the little time you have in between is spent trying to get some rest. But while you sleep, you think of tomorrow and what more you can do for your child. Am I doing enough?

The truth is, no one can really understand how you feel unless they’ve walked that special needs path. People can only imagine what it’s like, but they don’t get it. They don’t see your hard work raising your child and fighting for her rights, and how hard it can be to keep your head held high.

You’re not alone. I’ve been there.

I want to promise you one thing: you will find the sunshine after the stormy days. 

How do I know? I found mine.

With time, it will become your new normal. You’ll find joy and embrace every moment. The smallest milestones will become a victory. You’ll know this is just how it’s supposed to be. You’ll feel proud to share your child’s journey and tell the world about it.

People will understand why you cancel last minute or at least they will try to, but that will happen when you’re ready to talk about it. You’ll find support; talking to other families and sharing our story has became the best therapy for myself.

With time, you’ll forget all those awful feelings you once felt. You’ll feel love, and you’ll find strength for this journey. You’ll realize the little miracle you’re raising is exactly who she is meant to be. You’ll be proud. You’ll smile but you’ll also cry. Cries of joy, cries of uncertainty. You might still have days you just can’t help comparing your child to others, but it’s OK. I still do it, but it motivates me to work with my daughter more.

There will be sunshine coming your way, and hopefully it will clear all the cloudy days. Don’t let fear of the unknown take over; the unknown has lots of magical moments.

Love,
Another special need momma

A version of this post originally appeared on The Beauty of Being Different.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio.