5 Secrets I Want to Share About My Life as a Special Needs Mom

The last 14 days I spent in the hospital taking care of my daughter Sophia really allowed me to look internally. I realized that as a “special needs mom,” I have a few secrets — secrets I’ve never talked about, not even to my friends and family.

I’ll admit, I am pretty hesitant to share this, but after thinking about it for a few days, I decided I would like to share my secrets.

1. I’m not always strong/brave.

I worry. I cry. I get nervous and anxious. I am told with some frequency, “You are such a strong mama!” In reality, I feel anything but strong. I do what needs to be done because I have to. Because there isn’t another option. And this doesn’t make me special. This doesn’t make me brave. This certainly doesn’t make me a “super mom,” because if you were in my shoes, you would be doing this, too. Isn’t that what moms do for our kids?

2. Society as a whole is filled with kind people. Nice people. Down-to-earth, open-the-door-to-let-you-in-first kind of people. But some people are cruel.

I don’t live in a bubble. I know there is hate in the world. I know there is racism, prejudice and discrimination. I just didn’t know how real it was until I became a special needs mom. I’ve been told I should have aborted my child. I’ve been told she will be a “drain on society.” I’ve been told I am lucky to at least have one “normal” kid at home. These words hurt. I know it seems like I let them just roll off my back. I know it seems like I have thick skin. But I cry. I cried every time someone said those mean things. But I also moved on. Even though these words hurt, I made a point to move forward in spite of them and not let them have power over me.

3. I’ve lost friends, and it makes me feel lonely.

Why? Maybe they can’t understand what I’m going through. Perhaps it’s too hard for them to relate. Maybe they feel like I have enough on my plate and they don’t want to burden me and choose to leave me alone. What I want to say to them now is, I needed you. When my life got busy with appointments, therapies, doctor’s visits, hospital stays and treatments, I needed you. I didn’t need space. There was already too much space.

I have watched over the years as the “space” between some friends has widened, eventually opening so wide that neither of us could come over again. It’s heartbreaking.

4. And the one you will never hear me speak — I worry about dying.

Specifically in regards to Sophia. It’s horrible to write these words. But when your child has health issues and is at a higher risk to develop illnesses, it worries you. You don’t let it consume you. But it’s there… hidden deep in the back corner of your brain and your heart because you know how awful it feels to even think this. To feel this way. And every time you do think about “it,” you quickly tuck it back into that deep corner and feel ashamed for even thinking it, no matter how brief.

But the biggest point I want taken away from this post, is this:

5. I wouldn’t change any of it. Not for a day, not for a minute, not even for a second.

No matter how hard or challenging things become, no matter how many friends walk away, no matter how many cruel comments, no matter what health issues we will face, we will face them together.

I love you, sweet Sophia.

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