What You're Not Supposed to Admit as a Special Needs Parent

Our life is different. Very different.

Today I spent my morning grieving over another child who earned her angel wings. She has the same genetic disorder as my son, so I can’t help but put myself in her mother’s shoes. I was overcome with sadness. Tears streamed down my face as I drove my son to his sixth appointment of the week. Life is not fair. The unfairness of life and my sadness turned to anger.

In line at preschool to pick up my 5-year-old, I was angry as I listened to other mothers talk about wanting larger closets and getting Botox. I was angry this was what other parents worry about while I spent my morning in tears. Tears grieving over a child who wasn’t mine but could very well be. I know people whose biggest worry is getting to the fall sale while my worry is keeping my child alive. So I know it’s not right… but sometimes parents of “typical” children upset me. 

I said it. Out loud.

I know it’s irrational to get angry. I should be happy for them. I should be happy they don’t have to endure the heartache I do. I should be overjoyed that their child is excelling in coloring between the lines. And really, I am. But right now I’m angry.

I’m angry I have to worry about things that other parents can’t even fathom. I’m angry there are days when I simply cannot relate to others. I’m sorry I can’t relate to discussions about Hollywood heartthrobs. Now ask me who the hottest gastroenterologist is at the university and I might know. I’m angry I can’t plan playdates on a whim. I’m angry that I’m angry about parents sending a child to school with a cold. Not only is our life different, but I am, too. I’m different than other moms.

I changed when our son came along. I’m not who I used to be. I’m blessed. I celebrate the little things. I love bigger. I feel deeper. I’m stronger than I ever knew. I’m deeply loved. I’m more than I ever knew I could be, and there is no way I’ll ever be angry about that. I’m more because of him.

Today I’m angry that our life is different, but even with my anger, I’m grateful. Grateful that I’m different. I’m grateful to see life through different eyes. I’m thankful I don’t take small moments for granted. I’m grateful that every triumph is just that — a victory. I’m grateful that I’m going to look back on my life and know I drank in every moment and soaked up our life, the good and the bad.

So yes, I do get angry on occasion because I’m different, but it doesn’t take me long to add up why I’m grateful for the life I never wanted.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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 Submit a Story page for more about our submission guidelines.