Yesterday, I had the chance to attend the annual OACRS conference in Toronto. OACRS stands for the Ontario Association of Children's Rehabilitation Services, representing the 20 children's treatment centres in our province. Our local children's treatment centre, NPCC, offered the four parents who served on the parent advocacy committee from 2009 complimentary registration -with reference to our work on the committee. It was a long day, but it was an insightful day.
I enjoyed listening to the morning speaker, Spencer West as he shared his life's story. He lost his legs at age five, and has since overcome so many obstacles. He joked at the conference about his body -started with a story from his youth about volunteering at a magic show that went horribly wrong. It was soon evident that his story was a joke, in a successful attempt to put all of us at ease with his appearance. What I will not forget is his recounting of the time when his doctors gave him prosthetic legs, so that he would feel normal. After trying them numerous times, he finally set them aside and stated that he felt more normal simply being himself - with no artificial limbs. He encountered very stupid children in school who thought nothing of bullying him... yet, today, he carries no revenge or bitterness. Instead, he works with an organization to build schools in Kenya. Wow.
I loved the idea that he felt most himself without the artificial limbs.
So often as parents, we think that the various medical procedures, therapy, and equipment will help our special needs kids feel more normal, be happier.
Yet, there must be a balance with that perspective. Sometimes, the extras actually aggravate the circumstance, and you have a child who is unhappy or a caregiver who is overwhelmed with all the daily intervention required. The term "quality of life" is tossed around a lot in our circles. What measures quality of life accurately - especially with non-verbal, severely disabled children? Sometimes, as parents, we misunderstand what is best for our kids, and we don't just let them be who they are. Maybe we even try to disguise the disability, thinking we are protecting our kids.
This task of balancing the therapies and interventions with the truth and measure of the disability is not easy. Each child is so different, so the balancing act will also reflect that difference.
I also think the task also includes admitting all the emotions involved. Sometimes, our denial of the obvious drives us almost to exhaustion to find the "magic" surgery or toy or therapy. We want to think our kid will get better and be just like the other kids.
When we learn to accept the obvious, we can allow ourselves to be angry, sad - however complicated all those emotions may be. And then when we admit the cold, hard facts, we are free to move from that dark space.
In Power of the Powerless -which you all should read- I noticed this statement:
"Children like Oliver [severely disabled] exist as is. We decide if they are to be our tragedies, or if they are to be our triumphs."
No, I am not saying to someone who is just beginning a painful journey that they ought to grin and bear it. I am suggesting that at some point, when you have had time to unleash all the raw emotions, you then have that choice.
A tragedy or a triumph.
Spencer's decision came after many trials and personal desperation. It was only after the pain, that he began to find purpose and joy in his journey.
A friend sent me a note today about the development of a pearl. A pearl is indeed precious and beautiful, but its beauty is actually the result of pain and discomfort. The oyster's pain creates something precious.
Hmm... sometimes, it is these images and stories that enable us to sort through the human reflections of this journey called life.
Through it all, God is there. Really. There does exist His comfort in the midst of chaos and laughter on the lousy days.
And speaking of joy in the journey, here are a couple photos of Janneke learning to sit with her hands on her knees. These are part of her weekly physio session at NPCC where we are teaching her weight-bearing skills, including putting the weight of her hands on her knees. This also improves her balance.
That's the extent of the deep thought for tonight. The house needs a bit of love -and decluttering. Time to work until the last feed finishes.