We haven’t met before, but it is nice to meet you. Perhaps you landed here after frantically scouring the Internet for 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, and it all might have temporarily helped. But what’s next?
Not as planned
Our children might be nothing alike. They might not share the same prognosis, or have the same concerns or forecasts for the years to come. We might not have the same political beliefs or parenting philosophies, or even live in the same part of the world. But I know what it is like to be told that your child is going to develop on a very different path to the one you expected. Perhaps I will 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. But 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 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 that she hadn’t changed. The chubby-faced baby I carried into the doctor’s office was the same one who came out. She would still need dinner when we got home and would still 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.
For you, there will be many steps to follow. But for tonight, kiss your child and put him or her to bed. Then plan to start filling your world.
Fill your world
• Bring along only the most supportive people, the ones 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 the right people will hang in there. They may send take-out or jellybeans or bring over a movie (that you will sleep through), but they will be there. They will have no idea what to say to you. That’s okay. Just their presence will be enough.
• Fill your world with frozen meals. Cooking might not seem possible in the first few days and you want to make sure you eat.
• Fill your world with experts. Find people who can help you learn how to best advocate for your child.
You can do this.
I’m not one to say that you have been given this test to prove your strength or that there is a higher power involved, although many find comfort in these words. I’m simply a mom that wants to extend some kindness and to tell you—you can do this.
You will find that each day you learn more and become a stronger advocate than you ever thought you could be. It will not be an easy road, but it is never one you will have to take alone.
There are many of us out here. We are at 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 worry about the rest of the world tomorrow.
Leah Moore is a teacher and mother of three delicious children. She captures the stories of her special-needs daughter with Cri du Chat syndrome and the adventures of her twin baby boys in her blog, thecheesebus.com. She believes life’s odysseys can best be handled with kindness, a sense of humour and the perfect pair of sweatpants.