What does “Mothering Bookends” mean, anyway? Well, for me, it refers to the fact that, if you lined up my children in order of age, the two on either end, youngest and oldest, are my “bookends.” And they’re so very different — the oldest one has Down’s Syndrome. The youngest one has emotional and mental difficulties. The issues that accompany these two very different challenges couldn’t be more different.
I don’t know if most people could understand why many parents of Down’s kids think of them as a blessing, but mine certainly is and has been from the beginning. HE’s the blessing, but I never thought of how Down’s itself could be a blessing until my other bookend presented with the many challenges of a mental illness. How can Down’s be a blessing in that regard? Well, my child with Down’s, we’ll call him Bill to protect his privacy, has a handicap that is readily visible. I had always thought of that as a cross of sorts for him, because people make immediate judgments based on his appearance. And, that’s true to a large extent. But, my other child, on the other hand (whom we’ll call Anthony), doesn’t have that “luxury.” While Down’s has a visible component that can often have the effect of people finding a capacity to understand or be more tolerant of certain things, most times people with mental illness look just like the rest of us. There is not necessarily a visible component that hints at the chaos, confusion and hurt that live just beneath a smiling face or an awkward comment.
Bill has a direct line right into people’s hearts. He is very intuitive, and overflowing with love and compassion. People love him because he IS love, and they can feel that from him. Anthony has a very difficult time understanding the meaning behind a glance or a remark that most people would be able to quite readily interpret. He is bright and bubbly, intelligent and curious. But, there is a level of connection that doesn’t work quite right. He knows it and it makes him feel very different, like an outsider. Although he extends a hand of friendship to most anyone, many do not accept it because he can come across as a bit disconnected. So, he’s lonely, no matter how many people love him or how many friends he actually has.
Bill is never lonely. Bill has a deep, abiding, enduring Faith. If he were alone on an island for 40 years, he would never be lonely because Jesus walks every step of his life right with him, and Bill knows it. Of course…there would need to be Twinkies on the island, just the same.
The journey with Anthony has proven, and continues, to be much more challenging and heart-rendering than the road with Bill. Bill is an open book. Anthony is a Rubik’s cube. I never could solve those buggers.
When Bill was born, I could, and did, study everything I could get my hands on about Down’s Syndrome. I could find doctors who specialized in developmental disabilities. I could join support groups for parents of kids with Down’s. I could work it out — okay, he needs language development, I can do that. Visual stimulation? I can do that. He needs physical therapy — I’m on it. These were things I could define and attack head-on. From the beginning, it was, “Don’t tell me what Bill can’t do; help me find a way for him to do it.”
It’s not so clear with Anthony. He doesn’t think like other people. It’s not the same as a developmental disability because with a DD, there are pretty clear-cut strategies to improve areas of weakness. But, with an emotional or mental illness, it’s like…like that scene in one of the “Lord of the Rings” movies, where Frodo is in the big spider’s lair (Rosie?). He’s cutting through the webs, and getting caught, cutting through, getting caught. But, luckily, this is real life — we’re doing a lot more cutting through these days; a lot less getting caught.