I had a few minutes after VT yesterday so I sat down and read a book. Childrens’ books generally have large print so they are easier for me to read. Plus they are heavy on the pictures, which I also like. Much of the clientele is pediatric, so the waiting room has a bunch of books and puzzles for kids. I picked up a hardback picture book called Will You Take Care of Me? (Bridges & Sweet, Harper Collins 1998). The premise is that a mommy kangaroo and her baby are on their way home. On the way, the baby kangaroo asks a series of questions, e.g. “If I turned into an XYZ would you take care of me?” The baby imagines turning into many things, including an apple tree, a bicycle and a bar of soap, and each time the mommy responds with some appropriately witty answer that indicates she’ll always take care of the baby no matter what.
At the end of the book the little kangaroo asks, “What if I became a baby again?” – would his mom redo the hard work of caring for an infant? Of course the mommy answers with a resounding “Yes” and I was ready to bawl at that point. Thankfully my own Mommy came in the door at that moment so I distracted myself with putting on my coat and getting into the chair lift.
The reason why that book made me sad was because that’s what happened to me. I was 30 years old, able to support myself and live independently, and then all of a sudden I became a baby again and my parents had to move to OR and do everything for me. I’ve asked Mommy about it, and she kind of shrugged and told me, You’re our child. Where else would we be?
Many people might agree and think that what my parents did was an ordinary and expectable response. Based on what I’ve heard about parenthood, perhaps others would have done the same thing. I’m just pointing out that my parents rearranged their lives to move to OR for a few months, then kept on rearranging them so I could move back in with them. Naturally, it’s hard for me sometimes since I’m an adult and was used to living in absolute independence, but I gratefully acknowledge the backbreaking work my parents have put in to take care of me, a very large “infant,” since I’m physically unable to care for myself.
Since it was unknown when I’d wake up, Mom and Dad just waited by my bedside for over a month. “Wasn’t that boring?” I asked one day. Mommy didn’t even dignify my question with a response. She just made a sound like, Pshaw. The sameness was made bearable by the expectation that one day I would wake up, so they waited patiently. Spoiler Alert: I woke up and gave lots of people a (mildly) hard time.
What happened to me was sudden, meaning there was a point in time that marked my transformation from independent to disabled person. But there are many folks who face a life of caring for a child with special needs from the point of birth. The road can seem awfully long and I applaud those parents who care for kids like this on a daily basis. I also take my hat off to the grandparents who spend their golden years raising their grandchildren for whatever reason, but I digress.
When I was in OR I got to know a family with 2 daughters. Our care group met at their house and the dad was the ringleader. He also happened to work in the group I interned for in 2008. The eldest (K) has special needs and will likely require care for the rest of her life, and the youngest (B) is currently away at college. I got to know them both, and got along with K since I thought we were very alike (more so now that my filter is compromised), and I was also like B in that we both tend to work/study a lot. Maybe a bit too much. Their mom told me once that sometimes it might be hard to face a lifetime of care (when the normal way of things is to be an empty nester and eventually spoil grandkids) but in the perspective of eternity this life was actually very brief, and her expectation was that God would eventually make everything okay. This thought took hold of me and gave me the perspective/courage I needed to leave my family and move to Africa.
I also know a family here in the D.C. area with 4 kids. The eldest has Down’s and is a complete riot. I only met her once, but I still hear stories about her that make me laugh. When she was born people understandably struggled to find the right thing to say. Some of the comments were a little too pitying to be encouraging, though, making her father glad that he was/is her dad, not anyone else. Thankfully, the Lord knows where to put kids like us.