I'm interrupting the FAQ blog series to share a "life with special needs event" with you all. I mentioned in a recent post that I was going to be talking more about living with special needs kids (and parenting so many!) because a lot of people seem interested in it.
Yesterday we had an experience that people with "normal" kids don't have. Our daughter, Grace, is thirteen and severely disabled. She is developmentally delayed, on the autism spectrum, and has seizures. We love her to pieces but she can be a handful--especially when she doesn't want to do something like getting dressed or taking a shower.
We could handle it when she was younger, but she's about my size now. It's one thing when a three-year-old hits you, but it's an entirely different situation when a thirteen-year-old punches you in the stomach. As much as we try to take care of Grace on our own, we needed help.
Because of her disabilities, Grace qualifies for Medicaid, so thankfully we were able to get a nurse to come to our house to handle Grace's showers. This is bittersweet for me. While I am beyond thankful for the help, I hate that it's necessary. It feels like Grace has moved one step closer toward an assisted living facility.
One day, we might not be able to care for Grace in our home. This is just a fact. I have a chronic disease and I'm almost 50 years old. While I know every parent faces the moment when a child leaves the nest, it's different for a child like Grace. She can't speak, so she can't tell me if she's sad or if someone's hurting her. Although I'm pretty good at reading her, there are some things I might never know. Letting go of your children is always scary, but add severe disabilities and your fears escalate.
I worry about the day I won't be there to protect her. About the day her shrieks (her "happy noise") don't ring through the house. I worry that no one will ever love her the way that I do. I also worry about her siblings when the burden of her care falls to them.
It took a long time to adjust to life with a disabled child, but now that I have, I don't want my life to change. People always ask me how I care for so many kids--especially disabled kids. I won't lie. It's hard. There are days when I feel like I can't take another step. But I love my life--the way it is right now. With Grace at home.
A few days ago, I was sitting on the couch. Grace plopped down beside me. She does that a lot, but it's usually so that she can poke me or bounce up and down. This time was different. This time, she leaned over and put her head on my shoulder. We sat like that for a long time. The television wasn't on. The other kids were outside. It was just the two of us. It was a quiet moment full of joy.
When Grace was diagnosed, I mourned my "could have been" life. You know, the life where my husband and I retire to a child-free house. The life where Grace grows up and moves out.
People often ask how I can take care of Grace day after day. But now that we're one step closer to the day she might not live with us, I think the question should be: How can I not?