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conversations about health and disabilities
My Personal Story... Posted by mastertikitak on July 29, 2008 at 3:36am in Cerebral Palsy
I think it is appropriate that I write the first post; unfortunately, my oldest daughter suffers from Cerebral Palsy. I will never forget the day she was diagnosed. In short, my delivery was difficult, my own doctor not being available, a Resident MD delivered my baby. Apparently, not having dealt with difficult deliveries, he chose to use the dreadful Forceps, instead of opting for a Cesarian, crushing the right side of her brain; when the doctor showed me the X-Ray of her skull, the right side was literally hollow, with very little brain matter. I was put to sleep throughout the whole process; when I came to, and the following 3 days at the hospital, my daughter was in an incubator. I could only watch her from the nursery window and hear her shrill all the way from my room. I was told by a nurse that because she had to stay in the incubator, although she was full term, that " bonding" had not happened between my baby and myself; I was too stupid or neglectful to ask why none of the other babies in the incubators did not cry. She was my first, she was my angel; I just didn't know it then. She was diagnosed at 3 months of age by a neurologist at a Medical Center near us, upon my insistence that her pediatrician refer her for a thorough check up; the cries hadn't still subsided, was not able to breastfeed, or sleep more than an hour at a time; and that was probably from exhaustion. The ER doctors did not even pick up on anything being wrong despite many visits; I was made out to be an incapable mother. When she was finally diagnosed at the Medical Center and we sat down with the neurologist for the consultation, he essentially told us to put our baby in a residential home and continue with our lives. She is now 25, living at home, along with her sister and brother with no outside help--OUR HOUSE IS HER CASTLE = :); she does attend a Day Program for adults, since schooling for the disabled ends at 21. She is also mentally challenged and suffers from seizure disorder. Her music is her life and she is our life. Our lives have always been determined / ruled by her health, her needs, and her medical appointments. Although our lives have changed drastically, it is not something I regret; she brings joy along with the difficulties and has made me a more patient and stronger person. My daughter's love is unconditional; she will shower us with hugs and kisses without reason and makes us laugh all the time with her goofy but wonderful sense of humor. Needless to say, we did not keep the same neurologist. I find it difficult not in caring for my daughter, as much as the difficulties we've had with the medical, the educational community, and of course, the legal community as well, when she "magically" became an adult at 21! I would very much like to hear your personal story, family member's or a friends story about Cerebral Palsy and its complications.
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Your story tugs at my heart strings. A friend of mine has a 20 year old son with Cerebral Palsy. Not only is he confined to a wheelchair but his speech is not very intelligible. He learned to type, and his typewriter (now computer) soon began to speak for him. He typed letters to relatives and friends, as well as drawing upon the local press and the telephone books for names. Is he lonely? He could very easily be if he sat there and did nothing. But now he is much too busy to be lonely. His parents have no regrets in keeping him at home instead of instatutionalizing him, they are not plagued by feelings of guilt or an unresolved sense of sadness and loss. They are a happy family. I feel you went with your heart and did the right thing by your daughter. Too bad government support ends at 21.
 | | Laraine Feb 9, 2011 01:06 |  appreciated |
CONTRIBUTOR'S REPLY
Laraine...Thanks for contributing. I need to update this intel at a later time. I am so glad to hear there are families who are able to keep their loved ones at home; the more involved the condition, the more it would take out of you physically, emotionally, mentally, and financially. Please congratulate your friend for their blessed mission in life and the young man for achieving so much. Many believe the institutions to be a solution, but for whom is the question; although much has improved, they are still "cold" places for a challenged person to thrive. May God give everyone the health, the patience and the love to deal with "uncertainties" in life. Thanks again.
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