Monday, May 28, 2012

Cerebral Palsy

Most of the time, cerebral palsy is the result of something traumatic happening to a child at birth that causes brain damage. Infection like meningitis, bleeding into the brain, or an extended lack of oxygen causes neurological damage to a child's developing brain.

Our little girl - our adopted grandaughter - has cerebral palsy from this kind of injury. But it didn't happen at birth. It happened when she was ten months old when she was shaken and squeezed by her father. During this horrible event, Allie stopped breathing, and had to be artificially assisted to draw breath as paramedics "bagged" her and then, in an intensive care unit in a San Fransisco hospital, by a machine.

Here are some symptoms of cerebral palsy:

  • Doesn't walk or crawl
  • Abnormal muscle tone ("tone" refers to the usually normal ability to flex and relax muscles)
  • Slouching
  • Startles easily
  • Seizures (with Allie, startling often triggers seizures - today that happened five times in four hours)
  • Lies in awkward positions
  • Difficulty feeding, sucking, and swallowing
  • Favors one side of the body over the other
  • Some muscles are over developed and some muscles under developed (Allie has an an abdominal six pack and strength I covet)
  • Bad coordination (this may be inherited from me)
  • Hearing trouble (Allie has acutly sensitive hearing)
  • Vision problems (Allie sees but is seriously visually impaired)
  • Limited range of movement

From time to time, I'm asked questions about Allie's condition and prognosis. Some of you read this blog and know our story. Some of you have just come across this blog maybe randomly or from clicking through my Facebook page or something.

I'll be honest: I'm writing about this here because it's emotionally and spiritually therapeutic. Today was rough because Allie had several seizures. Two of them occurred while having a little get together next door for Memorial Day. A five year old little girl having seizures in the living room brings the mood of the party way down. Our wonderful hostess cried. 

I just hold Allie and talk to her and sing her our song:
Lord prepare me
To be a sanctuary
Pure and holy
Tried and true
With thanksgiving I'll be a living
For You

I don't know what else to do. It's a prayer and a soothing song. I know the Lord hears it. 

I used to get really mad at God for allowing such horror to happen. I'm not sure why I don't get mad any more. I don't have a canned answer for the question "how could a loving God let this happen?" If you have the answer, kindly keep it to yourself because it will probably fall flat unless you've walked through something like this. I'm not trying to be rude. I'm trying to be helpful. But now I'm a little sidetracked. 

I'm not mad at God because this little girl brings my wife and me incredible joy. We love to love her. I'm glad I'm the one who is there when she has seizures. Or is sick. Or can't sleep because her muscles cramp and ache. She's a gift. I can't imagine my life without her in it and I can't imagine my marriage to the Charming and Beautiful Susan if this trial had not come our way. I don't have the answer to how God could have let this happen, but I do know that Allie is the mission God has given us - gifted us - during the second half of our lives. And instead of question Him, I think I'll praise Him. 


Vicki said...

Reading this brings back the memories of walking (at a distance) through the horrors of those first weeks, the emotional upheaval for months, maybe years, over the awful thing that happened to Allie and your having to leave your lives in FL behind for a couple of years. They are not happy memories, but I am honored to have been included in the fellowship of suffering and growing.

I have no pat answers for the "why," either. I don't know why God did not heal me, as we'd all hoped, after my back surgery, last year; why the nerve-path pain came back so fully and He did nothing about it--all despite the many, many people who were praying for me.

But I'm glad He left me with the pain, because I stopped praying for healing, after a couple of months, and started asking him to help me to be tuned into this new thing--or, rather, the old thing that He left me with--in my life; what was His purpose, and how did He want to use me, now, at this point in my life, with my more limited activity level. I've learned more about trusting Him, I've learned more patience, in the past year, and I've grown closer to Him in the process. And if experiencing the horrific pain of both pre- and post-surgery will serve to make me any more Christ-like, any more fit for heaven, then I accept it, willingly.

So...maybe all of that is the "why," for me. I don't like the pain or the drugs that I have to take to manage it, but I trust His Heart and know that He still has plans for me.

Isn't He an awesome God?

Oh--and I do love that song. I think you are a sanctuary for Allie--you and Susan both. Bless you all.

Anonymous said...

Hey Bry, thanks for sharing your story. Scott and I are incredibly moved by the grace and strength that God has given to you both in taking care of His child. I love the song you sing to her. It is soothing. It is peaceful. It is God's word that He holds incredibly high and above all things. Love you guys and I can't wait to see us all in glory with Allie in her new glorified body.


Unknown said...

Thanks for the information on cerebral palsy symptoms, and I hope your granddaughter turns out okay, that must have been a very traumatic experience for everyone involved.

Medical Negligence Specialists UK said...

This article can truly touch hearts and change lives! Thank you so much! Keep that strong faith and keep that hope all the time!