Posted by: yemenia68 | November 11, 2010

Dealing with Cerebral Palsy

 

 

 

 

I’ve been trying to deal with my daughter’s condition as if someday she will get better. I think for the most part I’ve always wanted her to experience life as a normal, healthy human being. It always breaks my heart knowing that she can never participate in simple daily activities because she has cerebral palsy.

Other than her hearing loss, which she has had since childhood, she was pretty healthy. For the past few years she started having trouble walking, standing, and bathing. At first the doctor said she had stiffness in her legs, which to me seemed like a pretty odd diagnosis. I was sure there was something more than that. She was then diagnosed with cerebral palsy.

This past year I have taken her to see several doctors, Neurologists mostly, to understand why she has been having a hard time walking, sitting and standing independently. They discovered a tumor near her spine. Fortunately, it was a benign tumor; nonetheless, I was petrified to hear the discovery. I was looking for answers and what I got was a bigger problem. At first I was told that if the tumor was causing pressure on her spine, then they would have to perform surgery on her, which would solve her mobility problem. Then I was told that it did not have anything to do with her lack of mobility because it was not causing any pressure. The only thing left to do was to monitor the tumor every few months by having Cscans, MRI’s, nerve tests, and Eeg’s to make sure it doesn’t grow. I don’t know what is worst, for her to live with the disease or going through all those tests every few months.

The doctors recommended physical therapy for her and at first I tried my best getting her to her appointments. It was very hard getting her in and out of the house because she was in a wheelchair. There were times when she would fall and I was the only one with her. It is impossible to get her back up on her feet by myself so I had to call one of my relatives to come and help me. The same thing happened a couple of times before I decided to stop taking her to physical therapy. I tried helping her do simple exercises at home but she would give me a hard time.

It has been very hard for me knowing that there is nothing I can do to change what has happened to my daughter. There are days when I feel overwhelmed with thoughts of how or what I should do to make her life easier. I don’t know what to do or where to go for help.

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Responses

  1. God gave you her this way because it takes someone very special to raise a child with special needs. Probably doesn’t make you feel any better, but it sure does take a great mom to raise a child with special needs. Best wishes.

    • Thank you for your kind words anon. Special is not how I feel.
      I truly need a lot of guidance and perseverance from God to help me through this.

  2. My son was sick for five years and I felt the same way. He had Ulcerative Colitis. I never knew if Allah (swt) would take him from me or I would see him grow to be a healthy young man or a young man with much pain and agony. At one point I sincerely felt that if God wanted him that I understood. I think I said that 80% but no mother really wants to lose a child. There was a doctor who said to us as his parents that we need to have his entire colon removed and my ex at the time was not for it. He was still hoping some majical cure could come out of no where and cure him. I told him I would fight him to the court room if he did not sign the papers. My son has his colon removed and it was not the end. It took another year to recover and it was the hardest thing I had gone through to this day. Subhan Allah he is now over 6 feet tall and healthy happy young man. I know what you feel. Be secure that despite the difficulties that the greatest gift is you have your child. Even if not in a perfect way. I see many parent have kids who are not very smart,or any other number of problems and I am thankful God gave me children who are extremely bright even though they were not as perfect. There is gold in each of us and as a parent I am sure who can see that in your child on other levels. Please know that I know your hardship and I always wondered why my son got sick. The thing is sometimes even the Medical establishment just does not know either.

    • Thanks for passing by. I hope God keeps you and your family happy and healthy.
      The hardest part for every parent who has a sick child is the fact that there is nothing they can do to change the circumstances, all we can do is pray.

  3. I hope that you have started up the physical therapy again. It is VERY important and necessary for your daughter’s condition to work both with the therapist AND at home. If you have to ask others to help you then do it but it is your obligation as that poor child’s mother to get her the help that she needs.

    • To be honest, this is the greatest obstacle, getting her to the therapist. This should not be an issue for me, but it actually is, believe it or not. I am the only person taking care of her. Most of my extended family are out of the country. I live with her stepfather and five year old brother.
      I do what I can at home but I know that is not enough. Her insurance does not cover in home therapy, which makes matters worse.
      The one thing that I’ve tried for a long time to accomplish is building her a wheelchair ramp, and even that is taking forever.
      Sometimes I feel so hopeless, it’s so frustrating when you don’t know what to do or who to go to for help.

  4. Building a ramp is taking forever? How is that? The actual building of it or coming up with the funds to pay for it? I have seen them built in just a few hours.
    Have you looked here for help? http://www.cerebralpalsy.org/about/

    There ARE plenty of resources available out there you just have to find it. Get involved with organizations that can help you.

    • I tried calling a few places and they asked for $5000 and higher to build a wheelchair ramp. I was surprised at the cost. I’ve been trying to save up money but it takes a while to save up that much money, especially if you’re not working.

      Thank you so much for your concern. I will call this organization for help.

  5. http://www.facebook.com/abilitypath

    • Thanks for all your help Lynn 🙂

  6. Hello
    Something else you can do, as her Mum, is take a nutritional approach- i.e. trust that your daughter’s body can heal or partially heal by providing her body with the right nutitional conditions- my suggestions is to detoxify both of yourselves through intensive juicing (vegetable juices such as carrot juice) and cut out meat and processed foods. Focus on raw fruits and vegetables. Think of ‘the garden of Eden’. Upon that base, then supplement your diets with things like flax oil containing Omega 3 and iodine.
    I am Mum to our 17 month old boy who has spastic diplegia, and since his diagnosis I have taken a nutritional approach (as described) and he has made a lot of progress, getting better. I would strongly suggest finding a good naturopath too.
    Best wishes

    • Hi Elisabeth,

      This is the first time I’ve heard of this type of method. I will research more and see from there. Thanks for the advice.

  7. My mother is an occupational therapist and works with kids with CP all the time. If you have any questions about exercises to preform or anything at all please please contact me. I understand how hard it is to deal with this disease because my cousin has it. They use oils and such along with thearpy to help… May God watch over your family.

    • Thank you so much for the offer, it’s nice to know there is someone to go to if I have any questions.


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