My Advice for New Members of the Special Needs Moms Club

It’s not earth-shattering. In fact, it’s probably the same advice you got when you first started dating years ago. And I wish someone had given it to me.

Here it is:

Hang on to your friends.

Hang on tight.

Here’s why:

There’s going to be a time when they surround you.

They’ll be there for you. They won’t know what to say and will probably say things that they regret or things that make you cringe. They will probably stick their feet in their mouths. (“Will she ever be normal?” Yikes.) But that’s just because they don’t know what to say. How could they? This is all new to them, too. They’re learning along with you. If you keep them close, they’ll get better at finding the right language.

There’s going to be a time when they give you space.

There’s a steep learning curve when faced with a diagnosis. There are appointments, specialists, research to do, feelings to feel and a lot of processing time. You’re gonna need to muddle your way through it. You’re going to get really busy. They’ll check in and see how you’re doing. They’ll cry with you and celebrate with you, but you’re heading down a road that can’t fully follow you down. Send postcards. Fly over to their road when you can.

There’s going to be a time when you realize your path is never going to be the same as their path.

This is going to make you feel lots of things. Jealous. Angry. Resentful. It might make you feel bad that you feel all these feelings, and none of them are good. It’s going to make your paths feel even further apart. Take a few minutes to look around, find things that are the same on your path and reach out. I know, you’re thinking, “Why should I reach out, I’m the one going through the hard time.” Reach about because it’s boot season and you need a new pair. Reach out because your favorite coffee is back for the season and you have to have one. Reach out because when you do, you remember your life has many paths, and your child is just one of them. You’re still in there.

There’s going to be a time when all those early intervention appointments that kept you busy come to an end.

Those therapists you saw all the time and chatted with and had standing “dates” with will move on to other clients, you’ll move on to a new schedule and you’ll realize you didn’t need to see your friends when you had people who really “got” where you were in your life. Your regular therapists and various nurses were living the smallest details of your reality with you. You didn’t have to mention your new haircut. They noticed. But all of a sudden, they are gone and two years have passed, and where does time go? Meet a friend after your haircut. Plan a lunch after speech therapy. Call a friend on the drive to PT.

There is going to be a time when you finally catch a friend at a good time, and they are going to say something like, “Well I don’t want to complain. Let’s talk about something else.”

You’re going to realize your friends don’t want to unburden to you… you who have so much on your plate. They don’t want to talk about how busy they are, knowing you’re doing twice as much. They don’t want to talk about how tired they are, knowing “my kid doesn’t sleep” means your child actually doesn’t sleep until, like, 5 a.m. every day. They don’t want to celebrate their life with you either. They don’t want to talk about their travel plans or their kids’ successes because they know those things aren’t your reality right now. Let them know you do want to know what’s going on, that you want to hear what’s bringing them down and that you are excited for their lives and their kids (even though there may be days it’s hard to hear it).

There’s going to be a time when look at the calendar and realize you can’t remember the last time you ____________.

There’s going to be a time when you realize that, in addition to being tired and worried and so incredibly busy taking care of your child, you are lonely. Friends who are “giving you space” during this tough time might be waiting a long time to return. So don’t let that happen. Hang on to your friends. Be gentle when they stuff a foot in their mouths, and then the other shortly after. Don’t begrudge them for being happy or make them feel less than for having an easier time that you. Let them know you could really use a friend. Ask if they can meet near you. Or accommodate a weird schedule. Or keep inviting you to things, even though you often have to say no. There will be days you can say, “Yes!” So say yes. Then go. Have fun. Make more plans. Hang on. Encourage them to hang on, too.

Hang on tight.

Follow this journey on Mommydo.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.