Many years ago I worked with a young family who were dealing with a little boy with Down Syndrome who, much to their surprise, had become a toddler who could be a real handful. Mom acknowledged to me, back then, that somehow she didn't expect the 'terrible twos' from a 'heaven sent child'. I agreed, knowing the reference, and said that her son certainly didn't fit the 'meek and mild' qualifications. She laughed.
I guessed at, but never knew, the journey that this family had been on. She was a young mom, they expected one thing but got something different. But they both, father and mother, loved their son and wanted to do best by him. He was a challenge to work with, as a behaviour therapist, because he was a master at getting what he wanted and by shamelessly 'playing disabled' to get his parents sympathy. Once they saw through his gambit, things got better quickly.
Over the years I ran into them at conferences and other gatherings. The most recent was seeing him, the boy, as a full grown man, at a self advocacy conference. I know I'm getting older, not because I feel so much different, but because these damn children I know keep growing up. It was nice to see him and I gave him wishes to take to his mother. He must have delivered them because we had a few emails back and forth to catch up after.
Then, yesterday, and I write all this with at her request, I received an email from mom. She wanted me to know that her son, the man I'd met as a fully confident self advocate, had died. She was grief struck. Even through her grief she wanted to write me, she wanted a safe place to send her anger. So she wrote it down, pushed send, and it arrived in my in box.
Many people, those she has known for most of her life, have said to her that she must be "relieved" and "it's better for him," and "now she doesn't have to worry about him," and that her "burden" has been "set down." She is astonished at what they are saying. "They KNEW him," she screams in her email. Instead of condolences, she getting an odd kind of congratulations. "Well, that's done now." "You've survived that."
Some have reminded her at the shock she had when he was born. She and her husband had a tough few weeks at the beginning coming to accept their child. There were tears and there were accusations and there was guilt - one of them must have done something wrong. But they got through that, they met their child, discovered they loved him, and that was that. There were difficult times along the way. After all I ended up in their home, my behavioural bag of tricks with me, and they had the usual squabbles with schools and with teachers and with random prejudices in the community.
"It is as if because I grieved when he was born, people are surprised that I need to grieve his death," she wrote. She didn't realise that the memory of her shock and grief at the beginning of her sons life would negate the need for it at his life's end.
She wrote me, partly because she wanted to tell me, but she wrote also because she reads this blog. She didn't want her letter printed her, she's approved the quotes I've used, because much of it is much to personal. But she wanted to say to you, through me, that she wishes she'd sat her friends and family down, at some time, and told each of them - "I've over the shock." "I love my son." "I didn't mean some of the things I said when I was first told that he had Down Syndrome." She had just thought that they could SEE and HEAR her love for him. She thought that her husband's obvious joy and pride in the man his son became was CLEARLY evident.
"We haven't been patiently waiting to be rid of the burden of our boy."
After reading the email, I called. We chatted. I cried. She cried. Her husband cried. He was a great kid and he was, as I so clearly remembered, an awesome adult. They'd done good.
I reassured them that their love was obvious. I'd seen it the moment I met them.
But it wasn't obvious to others.
So, I'm doing as I was asked. Writing a blog for parents of kids with disabilities. "Tell everyone that you love your child." If the first few days and weeks were rough, as you adjusted to the role you were about to take on, you might have expressed a kind of grief and mourning, this is often part of the journey for parents of kids with disabilities. It's part of the journey for those who are newly disabled. It's part of the journey for many people for many reasons. It's normal. Just make sure that, when you turn the corner, towards hope and joy and embracing love, you let people know. Drag them round the corner with you - make them see the same thing in new light.
Now, the blog is done, now it's time for me - to join mom and dad in mourning a wonderful life, lost.