What Being a “Special Needs Mom” Is Actually Like, According to 1 Honest Parent
As the mom of a 20-month-old little girl who has Down syndrome, Pam De Almeida has learned to be brave. From strangers' stares to endless doctor appointments, this dedicated mother of two has been her daughter Sophia's unwavering support system — but there's something that she wants people to know.
After spending 14 days in the hospital taking care of Sophia, Pam realized there are a few secrets she's kept from friends and family about what it's really like to be a "special needs mom." She decided to share her raw truths in an honest Facebook post.
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!" when 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 not make me a super mom, because in reality, if you were in my shoes, you would be doing this too. Because ultimately 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-let-you-in-first-kinda people. But some people are cruel. Now 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 have been told I should have aborted Sophia. I have been told that she will be a drain on society. I have been told that I am lucky to at least have one "normal" kid at home. These words do hurt. I know it seems like I let them just roll off my back. I know it seems like I have a thick skin. But I cry. I cried every time someone said these 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. You lose friends, and it makes you feel lonely. Why? Maybe they cannot understand what it is your going through. Perhaps it's too hard for them to relate. Maybe they feel like I have enough on my plate that 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 crazy busy with appointments, therapies, Doctors visits, hospital stays, and treatments, I needed you. I didn't need space. There was already too much space. . . .
4. And the one you will never hear me speak . . . I worry about dying. Specifically Sophia. It's horrible I know. To write these words. But when your child has health issues and is pretty much at a "higher" risk to develop every disease and catch every sickness there is, it worries you. You don't let it consume you. But it's there . . . hidden deep into 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.