When Olivia was born, I knew something was wrong right away. But it took a week to confirm that she had Down syndrome. At first I was devastated. I was grieving for the healthy child that was lost. Then I was terrified. I thought, “I’m not strong enough to raise a child with special needs.”
How did I do it? At first, I had to dig deep to find the strength.
I went to therapy to work through my feelings of not being strong enough. And I became more involved with other moms. But also, I just dove in and did what every mother does. I cared for Olivia. I changed her diaper, fed her, and went to all her doctor’s appointments.
Olivia will be five in April. She operates at the level of a three-and-a-half-year-old. She’s a high-functioning child with Down syndrome, so she’s very verbal. But she needs to be taught things that other people take for granted. She had to be trained on how wide she needs to open her mouth in order to eat a hamburger. She struggles with spatial awareness, so if she has shoes on she doesn’t know where her body is relative to the floor. But if you take off her shoes, it instantly makes her feel more in tune with the space around her.
The biggest challenges have involved getting Olivia the extra help she needs. I had to call a lot of daycare centers to find one that would accept her. I have to stay persistent when trying to get her to see a specialist or therapist. It is even difficult to find her health coverage. There’s a lot of follow-up. A lot of being on hold. If I didn’t work from home, this would all be impossible.
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I have such a huge feeling of gratitude and appreciation for every milestone that Olivia meets, because I know how hard she worked to get there.
We may have to do things slower, or do them more frequently, but we always get them done. Every time Olivia does something that someone said she couldn’t do—like put on her clothes in the morning—my heart soars. She’ll say, “No, mommy. I do it.” It reminds me that I should have faith in myself, too. Even though it can be tough.
Some people are dismayed when they learn that Olivia has Down syndrome. People will say things like, “Oh, I’m sorry.” Why are they sorry? I’m not sorry. Olivia’s not sorry. She is the true essence of unbound happiness. My friends will come over just to hang out with her. Being Olivia’s mom is a truly positive, life-affirming experience.
In the beginning, I was terrified. But raising Olivia is not as hard as I imagined; the biggest thing that has changed is my capacity to love. It’s grown since she was born. That’s it!
Image Credit: Ben Rusnak/The Verbatim Agency for OptionB.Org