Monday, March 25, 2013

Cerebral Palsy Awareness Day

In the Spring of 1997, I was a young expectant mommy eager to meet my three babies and yet desperate for them to stay put until closer to their due date. Even though I was hospitalized and had not moved even a toe out of bed in weeks, my thoughts of the future were bright, hopeful and honestly more concerned about whether the kids would have Dad's dark straight hair or my light wavy hair than whether or not they would have Cerebral Palsy.

I was not naive, or ignorant of the risks. I heard the doctors talking. I knew what they were saying about the chances of these three making it. But even with the risks, even knowing that long-term disabilities could be on the horizon, the term Cerebral Palsy did not mean much to me.

Almost 16 years since their birth, I do know. Almost 16 years later, my world has been forever changed. And almost 16 years later, I want to educate others, I want to share, I want to help. I want to give you information and more than that I want to give you some faces that will help you understand the need for more knowledge, more research, more people committed to helping find hope for families affected by Cerebral Palsy every single day.

For example, did you know:

-That Cerebral Palsy is the most common motor disability in children?? It affects more than 800,000 Americans -- 1 in 303 children; and more than 17,000,000 people worldwide. Of course, in my house, it affects 2 out of 4 children. One of the two, Benjamin, can not walk at all, using a power wheelchair to navigate his world; the other, Mason, works his tail feathers off using crutches to move. According to a gait study, he uses more energy walking across the house than you will use walking UPSTAIRS all day long! He works his tail feathers off.

-That currently there is no known cure for Cerebral Palsy? There are surgeries that can help mitigate the damage being done by a brain that is sending all the wrong signals but there is no cure. When Benjamin's brain constantly tells his leg muscles to fire but does not tell them how to move, he becomes tight, rigid. This tightness, called spasticity, causes bone deformities, muscle contractures that become painful and make it difficult to clean his hands, his legs, whatever extremity is being affected. Surgeries can loosen that -- though sometimes only temporarily. But surgery can not fix it. Loosening the tendons that have become so tight his wrist is deformed -- for example -- does not mean he will gain use of that wrist or hand at all. As a matter of fact, my dear Benjamin had this surgery in December and now the wrist deformity is gone. The wrist is straight. But he can no longer open his hand. The contractures in his fingers are worse than before.

-In more than 80 percent of cases, the cause is unknown? This is not really true for us -- because the boys were triplets and born extremely early (almost 12 weeks early), the white blood vessels in their head burst in the area that controls motor skills. What we do not know is why it happened to them and their sister, also born that early is fine.

-CP is a broad group of disorders which disrupt a person's ability to move, sit, stand, walk, talk and use their hands?? The severity varies in each case -- and the severity varies in my own family. Benjamin is completely dependent for his care. He requires a power wheelchair and needs assistance for daily life skills. Mason on the other hand is fairly independent. He works hard to do all he can for himself and pushes his limits every day.

-75% of individuals with CP also have one or more additional developmental disabilities? These can include epilepsy, intellectual disability, autism, hearing loss and deafness, vision impairment and blindness?  While Benjamin has struggled with vision issues, three surgeries to correct strabismus and a continued depth-perception issue, we are fortunate that otherwise, my boys' impairments are limited to motor issues.

-Cerebral palsy is not contagious. The injury to the brain causing the disability occurred at birth or shortly after, you can not "catch" it.

-I desperately want to type that CP is also not degenerative. It is not degenerative. But today, I am struggling with that information. When the boys were preschoolers, I clung to it. I quoted it. I memorized it. I used it as a coping skill beyond all coping skills. IF we could learn what CP looked like for my boys -- wheelchairs, crutches, etc -- then we could use all our energy to help them cope, to help them succeed within their confines, to help them reach their very best.

Oh, please don't get me wrong. I am still on that mission. But I have learned that just because something isn't degenerative, doesn't mean it doesn't get worse. The damage does not change. The part of their brain that was affected at birth is stable. Not changing. But, oh, and this is big. As they grow, the effect that damage has on their bodies does get worse. The taller Benjamin has gotten, the more curve his spine has formed due to gravity and his muscle issues from his CP. Hence the big surgery we have looming.

As Mason gets taller, his body wants to crouch to lower his center of gravity and help him keep his balance. He has to fight this urge with every single step. Every single step. As if his single steps were not already enough of a challenge.

Growing bones and tight muscles do not offer a good combination. We have spent the last four years fighting the effects, working against the clock to save function, to help maintain independence for Mason and prevent pain for both. It is hard. It is overwhelming. And it makes me mad that while CP is not "degenerative", it does not plateau and leave my boys alone.

What can you do to help? (Cause I know you are asking??)

There are big things that need to happen -- Cerebral Palsy needs to be a line item in the NIH budget. It isn't.  Disorders affecting a lot less children has a line item for funding research, searching for the why? and looking for a cure. Cerebral Palsy does not. If you can, contact your legislators. Urge them. Wade, the kids and I had the privilege of speaking to legislators on Capital Hill two years ago. We urged. We pleaded. And we sat through a House of Representatives session where the congressman on the floor was discussing Cystic Fibrosis. Except he wasn't. He was talking about a child with cerebral palsy while urging the  representatives to fund research for cystic fibrosis. Sigh. Clearly, we need more education. We need more resources. We need people to care.

Be a friend.  Embrace the children and adults in your world with cerebral palsy. I assure you that if your children see you befriending your neighbor in a wheelchair, they will not think TWICE before befriending the student in their school who needs a wheelchair to get around.

Love the Mamas. Ok, this is self-serving. It is. But some days the therapies, the doctor appointments, the pending surgeries are just too much to handle. We do not want you on eggshells.  We just need you to be our friend. To love us on our hard days. To not judge us in the seasons when we can barely think of anything but an upcoming surgery. To stand with us with in our exhaustion. And to bring jelly beans when all else fails. Love the mamas.

And perhaps, the thing I want you to know most of all is this:

I have FOUR wonderful children. I have no doubt that God placed all four on earth for a big purpose. I have no doubt that Cerebral Palsy is part of that. That Benjamin's ability to roll into a room and command an audience is part of that plan. That Mason's ability to use his struggles to point people to Jesus is a part of that plan. That the ability Cate and Claire have to love others with special needs is part of that plan!

God is good. God is big. And God LOVES my boys -- and girls.

So, yes, Cerebral Palsy can make me scream, cry and uh, eat jelly beans, but we are blessed. Beyond blessed really.


Madison Anne said...

You are amazing to be able to write like you do and to handle life the way you do. It makes me ashamed that I have had it so easy in life and have not loved more and inspired others like you have. Gve your mom my love. I wish I had another hair cut from her.I am so prud of you and I know that your mom is so proud of you.

small things matter said...

I loved your post!! As a mom myself that has felt many of the same emotions I so appreciate how you write and express yourself!! I totally agree awareness has a ways to go and acceptance of diversity has a way to go as well but we have made progress and for that I am thankful. As I battle the public education system I look forward to the day that truly every child will have the right to a free and public appropriate education and that each student will be treated with dignity. I love your family and honestly feel like I am a better person after knowing you. All of you live with such purpose!! :)

sierra roney said...

your an amazing person one of my bestfriends is a girl wiith cerebral palsy (25)AND IM 16 and the kids are absolutly amazing,they are beyond compare to any other child in this worl because they value your love and affection in ways that others cant.thank you for being an amzing cp mom!