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.
