The Cerebral Palsy Network

Sunday, May 25, 2008

Beyond Cerebral Palsy

As parents and individuals whom are daily involved in the disability world life is "normal" for us. We don't see tragedy and grief. Nor do we sit back and think about can we do this. We just do it never looking back or thinking twice. It's been proven time and again that this is truly human nature. When faced with situations that one may normally never imagine being able to do. But usually you just do what ever it takes to make things happen.
Yes life can get you down no matter what the situation and many days we may actually wonder can we do this. Sometimes, we even realize that we could use an out. It's not an "out" from our children or an "out" from ourselves. It is however a moment to regroup, recharge and revitalize and to step back from the situation at hand as anyone would in any normal every day situation. To have a moment of no stares or comments or you poor thing.. Please understand that we aren't a poor thing we are truly and whole heartedly are Blessed. God has given us a wonderful opportunity to touch a life and to make a difference.
As a parent of a child whom has a medical condition called Bilateral Schizencephaly and Cerebral Palsy, I have to tell you there has been one wish for me when it has come to my daughter that has prevailed over time. And that was that was for my daughters voice. Her family understands her as do people whom have taken the time to know her. But as time goes by it gets harder and harder for her to speak and she has so much to say that people can't or won't take the time to listen to. IF they did they would be blessed to realize she is funny and smart and a pure joy and a blessing of wisdom. I did hope for her to walk I did hope for her to crawl to run jump and play. We all do, but then we have the joy of seeing a miracle of Faith when our child smiles or laughs or blesses us by just simply being. Then the walking and talking seem so small. The bible talks about faith the size of a mustard seed and for me, my life daily is just that..
Of course I couldn't imagine enduring watching my child suffer from brain cancer and my heart is ripped to sunders when I read or hear of something of that sort, I start to tell myself I don't think I could do it and then this little voice reminds me.... "Yes you could and you'd do whatever it takes to make your Childs life the best it could be." Just like when I found out my daughter had Cerebral Palsy. I didn't cry, I also didn't say why me why my child. I may have been the rarity in that case but all I wanted to know was ok what do I do for her to make her life the best it could be. I don't regret that to this day and I'm thankful for me it was how my grieving progressed because from that moment I grew and learned from my child. What a rare and wonderful miracle
The next time you see an individual with CP or a mother toting a child on her hip and pushing another in a wheelchair don't run down the next isle to get away. IF your curiosity gets you, go with it, ask . It's ok to put yourself in the position of needing to know and to understand. It is the only way to learn by being taught or experiencing it. Just because you don't know quite what to say don't say Im sorry and don't think of a disability as a death sentence because it's not. And please please give our children a chance to express their knowledge to you before presuming they don't comprehend. You will miss the blessing before you if you do..
Thinking beyond CP doesn't just start with parents or individuals it also starts with you.
It is my hope that with this section of our CP awareness area that we can offer a place for parents and individuals a place to express their views on "beyond CP". Just what they want others to know and realize about their situations as well as a place for those whom do not deal with disabilities to have a place they too can ask those questions.
Feel free to add your thoughts on what "beyond CP" means to you or things you hope to express to the world (yes in a kind way please) what you hope for them to see beyond CP.
If you have a question on how you wander something should be handled or have a question your afraid to ask someone face to face. Please feel free to ask. This Blog is open to the public and is a first in our organization to have. We've usually kept our blogs and such closed to the public. Please respect one another here. We are in the business of helping others not tearing people down. Thanks mucho More coming soon.

4 comments:

Yvonne Huygens said...

My grandson is 3yrs. 3months old and has Schizencephaly and also just found out that it trigered CP, by what we were told his Schizencephaly set something off. He has stiffness in his muscles. We just spent 2 weeks at the Childrens Hospital in Omaha Neb. It is a wonderful place. This time we got a Dr. that wanted to get to the bottom of things,(Thank goodness for that). So! He got all the specialist he could find together and got things taken care of, to this point anyway.
Colby has never weighed more then 18 pounds and I am here to say that now he weighs a little over 20
pounds.
He is a true joy, with a giggle that will make you have an impossible bad day. A smile that would melt the coldest of hearts.
My one concern is that, he has had CP since birth as well and we were so worried that we had done something to harm him. We were told that, that was no way true. With all the theropy he has had none of it would have hurt or harmed the CP. He has Bilateral Closed Lip? Schizencephaly. That sure don't stop him, he just keeps on the go. No he does not walk/crawl/nor does he really talk. But,once again who really cares. I was told that it would be a great idea to teach him sign language. My concern there is that he is not ale to sign. He does however understand them. Do you have any idea's? He gets so discouraged that he is not able to do what other kids can. I try my best to pick him up with positive thoughts but, I'm not sure he is buying them. He is a very smart little boy. If and when he is able to speak we are all in a world of hurt.
We are all in this together, mom,myself,and grandpa,daddy too but, he is a Marine over in Japan right at this time. He does what he can by talking to Colby, either by phone or on these wonderful things they call computers.
Any idea's on how to make his life better would be awesome.
Oh! I forgot to tell you, his stay in the hospital was to have a G-Button put in and what they called a Fundelmacation done for his acid reflux. I'm not sure if I spelled it right.
I understand that people make mistakes but, don't you think they should take a little more time to know the person before they just guess at whats going on? I'm sure glad they didn't do that this last stay in the hospital.
I was so thrilled to find and read your sight. It was like another door was open to me. I couldnt of said it any better.
Do you feel it is wrong to disapline these kids? I sure don't as long as its with in reason.
It is so hard though, when he looks up at you and sticks out that bottom lip.
Anyway I could go on for ever, thats what happens though when my heart has been blessed. Thank you for being here.
Yvonne Huygens
Colbys Grandma
Sioux City, Ia.

The Cerebral Palsy Network said...

I apologize for not responding before now. I am going to look this over and respond shortly. Dena

The Cerebral Palsy Network said...

Hello Yvonne,
My daughter has bilateral schizencephaly as well. She is now 31 yrs old. Hers is closed lip as well.
Please do not worry to much which I know is the most rediculas sounding things to hear but as a momma with a daughter that has a disability I will tell you first and foremost. This child will change your everything, blow your mind on the things he can do despite his limitations. NO one will be able to forget him or the difference he makes in their lives.
When you or others talk to him believe that he is has all his intellect there he is just trapped inside a body that well.... sucks is how my daughter would explain it. Do not give up. USE every sort of communication possible. Try the sign language, use eye gaze, communication devices, facial expressions and sounds anything. Let me tell you that 31 yrs after my daughter was born, her speech therapist was able to get my daughter to speak some words she had never been able to before. She does speak but you have to take the time to allow her to do so.

As to discipline you do have to set limits as well as letting them know some behaviors are not ok just as you would any child. I do not believe in extreme discipline but that was because I do not believe my daughter ever needed that. She was and is a good child. She on occasion would start throwing fits when she couldn't get out her needs and I would tell her when your done we we will get back to figuring out what you needed because now I really can't figure it out.
I also want to make sure you know about another group that I am a part of and have been so blessed by them and that is: http://www.schizkidzbuddies.com/ That is the Schizkidz buddies. An amazing group of folks that will help you along the way when dealing with schizencephaly. CP doesn't really define our children it is more of a medical waste basket where as learning more about the diagnosis of schizencephaly will answer so many questions. Feel free to join our network. I'd love to continue getting to know you and helping your family along the way. Dena Kirchoff

Jackson Karen said...

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