Today is the last day of Cerebral Palsy Awareness Month. The 31st day of a month designated to make you aware of Cerebral Palsy. I have meant to type something for 30 days now. Thirty.
When I search my blog for the words Cerebral Palsy or Special Needs, I get more than 200 entries. So I am struggling today to tell you something new, something fresh, something I haven't said one or two hundred times. And so I have walked away from posting for 30 days now.
But I can't let the month go completely by without sharing from my heart a few bits about CP -- it is after all the lens through which my family views life. It is my heart's desire to raise awareness and to help the world understand the complexities of living with Cerebral Palsy.
So here are some things I want you to know today:
1. Cerebral Palsy means that something caused trauma to the brain either before or right after birth. Beyond that, it means very little. Children with CP can often talk, walk, hear, feed themselves. Sometimes they can't do one or more of that list, often they can do all of it. Always (always always) assume they can. Period. You'll know soon enough if they can't -- but really, do you need to know the full range of a person's capabilities before speaking to them? No. Say hi.
2. Cerebral Palsy is not contagious. Almost 20 years in to parenting my amazing trio, I still get guarded when we walk and roll into a new place. We have been in restaurants where no one would sit near us. We have been in churches where no one would make eye-contact. We have been told that people just simply aren't comfortable being with our boys for a myriad of reasons from "I don't know what to say to them" to "It hurts me to think about their future." Please, help me tear down my guard walls, let me trust you to KNOW that you can not "catch" CP from us; to KNOW that you just have to talk to my guys -- though you might want to be well-read and have a strong vocabulary because they are quite the conversationalists -- to realize they are great friends to have around; and to KNOW that you don't need to worry about their future, God has promised that He wrote their story a long time ago and it is beautiful!
3. Cerebral Palsy does mean that we aren't the easiest family to friend. You might need to build a ramp into your home -- or at least clear a path so we can bring our own. You might have to tolerate the small vehicle that my son drives from point A to point B on your nice floors. You might have to arrange seating at the dinner table so I can help my son eat.
On our mission to Mexico earlier this month, our dear family and brand new friends wanted to go out to dinner all together. We needed a restaurant that could both accommodate a large large group (we made a LOT of friends) and didn't have steps to enter. I clearly was out of my element and had no idea how to help -- since not only did I not know the area, I couldn't even clearly brainstorm with my limited Spanish. These friends talked and made calls and found us a restaurant on the edge of town that would work perfectly. And though it was closing as we pulled in (did I mention it was very late?), they rushed ahead to explain the situation and beg them to stay open. And they did! Without us, this group could have just gone somewhere close to the church that they knew would still be open. But they did not even ONCE make us feel like a burden. What a precious gift.
4. Cerebral Palsy does not mean we can't go to college. It does mean the road might have some challenges that have to be negotiated but they are not insurmountable! Benjamin and Mason are sophomores in college. They both have almost all As for four semesters! Benjamin lives at home and commutes, Mason not only lives on campus but is a resident assistant for the students in his dorm!
5. Cerebral Palsy does not mean you can't go to Mexico on Mission -- or Argentina -- or anywhere God calls us for that matter. Quite the opposite, when we are willing, God can use our voices as we walk or roll into a room!
6. Cerebral Palsy does mean that some days are hard. I struggle with this one. I prefer the rainbows to the rain. But trust me, there is rain. My boys are amazing and smart and accomplish much every single day. But with that comes a real exhaustion that necessitates down time, time to recover. Days of doctor appointments, therapies, wheelchair malfunctions can cause mental exhaustion for us as a family as well as physical exhaustion for the boys. Some days we are just flat out tired.
7. Cerebral Palsy means -- and this is probably going to sound silly to you -- that we can't hike, bike, or run together. Really. In my head, pre-children, we would do those things. But that is not our reality. You probably won't find us camping. Or on the beach. Or hiking down to some exotic waterfall in the Grand Canyon. Because you know, we can't. So please don't be so harsh when you hear us talking about going to Disney again. We are doing what our family can do together. Just like you are.
8. CP means sometimes this Mama and her adult son use the women's restroom. So save me your need to police the potties. I am doing my best and so is he.
Ok. I wanted to have ten...but I feel like I am leaning towards my preachy side....oh mercy. What I really want you to know is that my children are all four amazing -- with and without Cerebral Palsy. We have some struggles -- some mountains to climb that might make us sensitive to other issues. We have some battles to fight that might make us impatient with those who would go through life scar-free. And yet, we have the joy of taking nothing for granted, of celebrating the details of every accomplishment, of choosing to give our abilities THIS day (every day) to God's glory.
And so as the end of this awareness month draws, would you just be aware? Would you notice the mama needing an extra hand in the church nursery? Or a closer parking spot to unload? Or maybe you just choose to wait on the non-accessible restroom in case that mama rushes in with her son in a wheelchair in desperate need of the accessible one?
I would be so grateful.
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