Wednesday, October 2, 2013

World Cerebral Palsy Day: Those who go before us

As a parent of a child with Cerebral Palsy it can sometimes feel daunting – the letters, meetings, research, appointments, arrangements and conversations that need to take place so Brett has the same opportunities available to him as his brothers and peers. From big things like integrating into a classroom and making sure there is playground equipment he can use to little things like keeping up on the latest studies and research on CP – the list never shortens. We take time to celebrate every little victory, but then use that energy to move on to the next challenge.

When I feel exhausted or defeated, as I sometimes do, I stop and remember that I’m picking up where others left off. It’s my turn to carry the torch for a while because there will be another child right behind Brett and I want their lives to be better and easier.

It still shocks me to think that it was within my lifetime that people with Cerebral Palsy were institutionalized and marginalized (and sometimes still are). I think of what it must have taken to change that. When I was in school the children with special needs were seen in passing in the halls, but had their own classrooms. Someone looked up and out and said ‘I need a mountain moved’ – and I am so grateful – they have moved – even if just an inch.

On this day of spreading CP awareness I want to introduce you to some of the mountain movers I know:

I am privileged to know a young woman named Hannah who we met where Brett gets his therapy at Easter Seals. Much like him she drives a power wheelchair and uses a communication device. She is a college graduate with an enviable job and a strong faith. She lives independently in an apartment with help from an aide. She went parasailing on a vacation recently. She has been a friend to me and my children and a source of motivation to us all. Probably without knowing it she offers me a vision of what life can be like for Brett. She constantly has me rearranging my view, seeing the world as a better place for Brett each time.

I know a woman, Amy, who works where Brett gets his therapy. She was the first adult with CP that I got to know after Brett’s diagnosis. She probably doesn’t know this, but she made it all seem so less scary. We are there on different days so we don’t see her too often, but when we do Brett shrieks with delight. If he hears her voice down the hall he will fuss until he sees her. He even cried once recently when I said he had to say good-bye to her because it was time for therapy. She offers her time to camps and her alma maters to talk about CP and spread awareness. She says things to Brett like “I know buddy some of those things are a little harder for us aren’t they?” People are drawn to her – she is beautiful inside and out. But Brett is drawn to her on a whole other level – she gets him. I appreciate the positive messages and awareness she is spreading about CP.

I met another mom, Susie, earlier this year. Her daughter has cerebral palsy too and many medical issues – she has been integrated in a regular classroom since kindergarten and is now taking college courses. The road was difficult and exhausting, but they carved out a path where I can start with Brett that’s a little less bumpy and she has come along side us on the journey and is walking with us and gives me courage and wisdom.

I know a couple, Katrina and Joel, with triplets plus one. Four beautiful children and three of them have cerebral palsy. They are a joy to spend time with, a blessing in our lives. They are sending their children to conductive education. A rehabilitation through learning program that pushes children to reach their potential for independence. It is not close to their home but they have rearranged their lives to offer their children an alternative opportunity. Both the parents and their children are a shining example to me of Philippians 4:13 being lived out daily.
“We can do all things through Christ who gives me strength.”

I met a mom, Kris, whose son with cerebral palsy is just a little older than Brett. They live just across town from us and have three boys – including twins – so she gets it. She always seems to be a few steps ahead of me in advocacy, research and equipment. In addition to being a great friend she is a great resource and a woman of exceptional strength and courage. Last month she took her son to St. Louis for a surgery that I know was scary, but holds promise for her son to have a life with less pain and more possibility. I am watching closely as his amazing story continues to unfold. It is opening my eyes to the possibility of a different future for Brett. And, if nothing else, it fills me with immense hope.

These are just some of the stories. These are just the ones that have intersected our lives lately. But I know that every possibility that is out there for Brett did not come without a parent, teacher, therapist or other loved one behind them fighting the good fight.

To all of them on World Cerebral Palsy Day I offer my humble and sincere thanks for going before us and coming alongside us in the world and making it a better place than it once was. I am grateful for the examples of courage and strength giving me the motivation so I too can go charging forward and, God willing, make life a little easier for someone else.