I went to my room a few minutes ago to collect my laundry to wash. I was met at the upstairs landing by my 6-foot-tall, almost-17-going-on-four-year-old grandson asking me to sing him the lullaby I made up when he was an infant.
..
I don't know if I remember it all, I said. He started me off, and I soon remembered a few lines and the tune.
...
"Ai-yi-yi, Yi-yi, boo-boo,
Sang the baby boy.
It was the only song he knew;
Ai-yi-yi, boo-boo."
...
"His grandmother rocked him back and forth
and sang him silly songs;
then, before you knew it, he fell asleep,
right there in her arms."
...
I was beginning to choke up. I told him I couldn't sing any more.
...
Sing it to me, Nanny.
...
I just did, honey.
...
No, I mean sing it to me after I get in bed.
...
He couldn't hear it but my heart cracked clean in two. A hurt I try not to feel pushed against my ribs and my lungs, squeezing air out through the hole his words had cut into my chest. I was looking at the face of a little child, peering out through the body of a teenaged boy.
...
I can't tonight, dear, but I will tomorrow night. That was the truth, I could not have sung those words again without sobbing and I knew he couldn't understand why I was crying even if I told him.
...
Hell, I don't even know why myself. All I know is I hurt, I'm bawling, I'm feeling broken-hearted for him and I can't fix it, goddammit.
(c) 1992, 2009 Martha McLemore
18 comments:
Sometimes we learn to handle a difficult situation, a demon, by shunting it into a corner of our minds, a cage if you like. We know its there but as long as it stays in that cage we cope.
But like all cages there are keys. They can be anything and can vary and those keys will, from time to time, let the demons out.
So then you have to find somehwere safe for the key.
Or learn to allow the demon out of the cage.
I hope I'm making sense Martha.
Take care xx
Of course you can't fix it, none of us can. Gosh, we can hardly fix ourselves! I know I can't.
I read the story below. I see you might have learned a lesson yourself.
Put it all into perspective for a moment. He is who he is. You don't control it at all, and the possibility exists that it isn't about you.
You have love for him. Stop right there. What happened is past you, and you don't know what will happen in the future. Love this moment.
I want to make you feel good right this very minute, wish I could be sure I'm doing that.((((((((Martha)))))))))
I was going to remove this post because it seems so whiney. (I did take out language I don't normally use.) I'm letting it stand because maybe, just maybe, there is another grandmother out there struggling with her feelings of inadequacy in dealing with her grandchild's illness, no matter what it is. Maybe it will help her to know she isn't alone and that having down moments is okay - just part of the process of accepting and dealing with something you can't fix for your beloved grandchild.
Donovan doesn't recognize, or have any internal control over, how he acts at times. He will be like this for the rest of his life. What we hope for him is that the training he is receiving will enable him to recognize when he regresses to the 4-year-old stage so he can pull himself out of it on his own. There are no guarantees the training will take.
I cannot begin to tell you the cruelty this wonderful human being has endured at the hands of people who don't know about autism and the multitude of behaviors children with this condition exhibit.
This post isn't about the lullaby. It is about the heartache I feel because I can't protect him from the meanness and mindless cruelty of the rest of humanity. I can't fix things for him in the same way I can teach him to use handtools in my shop, or how to cook or do laundry. I can't fix the heartache my daughter feels, or the depression she slides into when the reality of Donovan's life overwhelms her.
We do pretty well, usually, but sometimes that hurt we try to suppress breaks lose and overtakes us, like it did me last night when this nearly grown young man wanted me to hold like I had when he was an infant and sing that nonsensical lullaby.
Sorry if any of you are offended by the post or this comment. You'll get over it, I'm sure. Just as I will get beyond my moments of despair and carry on, as before. It's what we do, all of us.
Martha (Boo-boo's Nanny)
How very human to feel despair over what you cannot fix. There's no one to blame, nothing to be done. Just keep loving each other and protecting him as best you can.
The world is cruel at times, but he will remember that his Nanny loves him. Maybe when you feel able, you could record yourself singing that lullaby to him. Then he could play it even when you can't sing it.
love, and light, and joy, and strong hugs...
I visit your blog often, Martha, and comment seldom. I feel moved to do so at the moment. The greatest need of any of us is to be loved, and you are giving Donovan the greatest gift of all.
Before I sang to him tonight what I remembered of the lullaby, I told him the story behind the song, which seemed to matter more than the song.
When he was much younger, physically, and he would ask for a story, I made them up, with him as the hero, using things he had done that day as the plot line. He never tired of them, even when the story was short and not much happened. Even when he knew how the story ended before I reached "The End".
Maybe he just wanted to know, tonight as well as then, that I paid attention to him, that he matters to me enough that I keep his story going.
Well, by God, that is something I can do for him. And will do, for as long as I am here.
Maybe, just maybe, he will keep my story going after I am no longer here. We will continue to live on in each other.
A sweet post.
Writing things down can help. They can help you order it in your mind by seeing the worry, concern, despair as a physical thing a few inches away rather than something within your mind too close to face.
And you can go back and reread it and see how your view of things changes over time.
So you did right to post this and to leave it too.
I think I would have had the same feelings. As one gets older, sometimes very small and things we rather took for granted in our relationships, particularly with our children, touch us deeply in a way which it is hard for others (and for them) to understand.
Catching up here and the last post, and feeling sad for you and your family, yet admiration for how wisely you are handling it all. My dearest friend has a son with Asperger's, very intelligent, creative and high functioning but has emotional issues with human relationships where he's even been taken terrible advantage of by a 'friend' (ie. theft). He's in his mid 30's and has lived on his own for many years, in a little house he renovated himself. Anyway, what I'm trying to say is that with all the help, encouragement and love your grandson is given by you and his mother and many others, he may grow up to be self-reliant and happy.
As Marja-Leena said.. I have someone like that too. I do understand and have felt the same way but they can grow up to be self reliant and happy - even have college educations, hold down responsible jobs and have dear friends who love them for who they are.
Thank you, everyone, for taking time from your lives to encourage my daughter and me in our life with Donovan.
Almost every day, we find new hope, new treatment possibilities, new things to try in our efforts to help him learn to care for himself. Sometimes, we learn new coping skills, too, also important in helping him.
We are sometimes so caught up in the day-to-day struggles that we fail to have positive daydreams about the future. The success stories you've shared (as well as the support shown) are deeply appreciated and have lifted our spirits tremendously.
My mother's greatest compliment for people was to call them 'kindhearted' which meant they were generous with their time and caring for others, with no thought of reward or recompense in any way. These were the truly godly human beings, the most blessed among us. The kindhearted were her role models, and her aspirations for her children, beyond all else.
Thank you, Kindhearts. I cannot say it enough. Thank you.
:)
Crow-- not sure if you know this about me already, but I have spent the last 30 odd years of my working with, teaching and researching kids and adults with Autism.... I have just yesterday finished a week of camp for 45 kids and youth with Autism.... it is in its 13 th year, and some of my kids have been with me for the full time... it is a deep and complicated way of being in the world. I have learned so much from my time in the worlds of autism... and I continue to learn. There is much to learn.... the kids,youth & adults are my best teachers...next week they are back and I look forward to the next round of life lessons. I am grateful to you for your honesty : emotional and expressive.... it is necessary and meaningful.
Harlequin:
No, I didn't know of your work with autistic folks. How small is our world, huh?
You are another Kindheart, for working with people in the autism spectrum can be devastating and heartbreaking, as well as inspiring and uplifting. Thank you for the work that you do, Harelquin, and for your encouragment to us. Wish I could give you a hug.
:)
Do you ever visit Rosie? She teaches music to kids with Autism.
http://abitchaboutbrittany.blogspot.com/
Hello, Z:
Yes, I do, and I find comfort in what she writes. Also, I'm interested in her husband's drums, as a tool to help Donovan with his restlessness and near constant rocking when he isn't involved with his games.
I visited her site after Lucy posted about Marja-Leena's visit. There is another, "A Blog on the Spectrum," I think, that shows a different section on the autism spectrum of disorders.
:)
Dear Crow - My own son has Asperger's Syndrome, a form of Autism. I know exactly why you cry. Life is so unkind and difficult for them. They cannot read social cues and have no inate understanding of how to act. Because they look "normal" and are usually intelligent, society doesn't cut them any slack. It is a tough row to hoe. I just read "Look Me In The Eye" by John Elder Robison. He is Augustan Burroughs'(Running with Scissors)brother great insight into how the world looks through the lens of autism.
Dear Lucy:
I couldn't post your comment the way I wanted to, so I'm pasting it here:
~~~~~~~~~~~~
Lucy has left a new comment on your post "Postscript to Doghouse":
Oh Martha, just read this and the post before. How very hard, and how loving and dear you are. When so many people go around spoiling so much with no excuse, and don't bother trying to explain to their children or themselves anything about right and wrong, don't take it so hard that Donovan sometimes struggles...
There is nothing whiney or offensive in anyway about this post, there's not much we can offer in the way of help, but if having somewhere where you can write it out like this helps, you'll always be safe here.
Posted by Lucy to The Crow at September 6, 2009 12:50 PM
~~~~~~~~~~~~~~~
Thank you, Lucy. Being able to express feelings is something Donovan struggles with every day. I am fortunate to have this blog where I can say what he cannot.
Martha
:)
Deedee:
My heart goes out to you and your beautiful son. How do I know your son is beautiful? Because my grandson is, too.
There is something beautifully different about the children who are caught in the snare of autism, just as there is something heartbreakingly, profoundly sad, as well.
Thank you for your support, Deedee. I will look for the book you mention.
If you ever want to 'talk,' my email address is sofie.onecrow@gmail.com.
:)
Post a Comment