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A long time ago, my neighbor had a granddaughter that had Cerebral Palsy. Her and I would sit for hours playing cards, doing crafts, playing games, Etc... It never bothered me that she was wheelchair bound.
Years later my first born child was born with Congenital CMV. Having this also deemed her with Cerebral Palsy. This has left her in a wheelchair and being dependent on me for everything. We have gone through all the norms of childhood with added events.
At 6 months of age she had her first seizure, which we went back and forth for years between different medications and options to help calm or stop the seizures. We finally found the ketogenic diet, A high fat, high carbs, no sugar diet. With in the first week her seizures calmed to almost nothing. This was the best breakthrough we went through.
Slowly as years went on, 2 years on the diet we were able to go back to normal foods and formulas. Since then the doctors have found a good combination of medications to keep the seizures under control.
Since then she has had 3 major surgeries on both her hips and her back. Her hips dislocated cause of her muscles being so strong they over powered her joints. The last surgery was on her back. She was physically 120 degrees out before the surgery. Now she has 2 rods on both sides of her spine which has brought her almost back in alignment.
When she was born the doctors told me that she would die by the age of 1, but time and time again over the past 19 years she has proven them all wrong. She is always happy and when she giggles I know she is hearing her own tune and she knows the love she receives everyday.
My most recent tattoo is that of the 3E wheelchair heart within the word Love, to complete the statement a mother's love. This was done for her and for what she has taught me about life and most of all unconditional love.
She has 2 younger brothers who don't see her any different then they are. They embrace her , educate themselves with my help, educate others about her, and love life in general. They love to help me take care of her, read to her, talk to her, and sing to her.
She has become my voice to educate others about her CMV and explain everything we go through. I don't know what I would do without her in my life. She is my angel in the dark when I don't think I can handle what life throws at me.
I have met some great people through our journey, teachers, doctors, other children. It is just great to know and have known these people in my lifetime. I don't think I could ask for anything more.
Years later my first born child was born with Congenital CMV. Having this also deemed her with Cerebral Palsy. This has left her in a wheelchair and being dependent on me for everything. We have gone through all the norms of childhood with added events.
At 6 months of age she had her first seizure, which we went back and forth for years between different medications and options to help calm or stop the seizures. We finally found the ketogenic diet, A high fat, high carbs, no sugar diet. With in the first week her seizures calmed to almost nothing. This was the best breakthrough we went through.
Slowly as years went on, 2 years on the diet we were able to go back to normal foods and formulas. Since then the doctors have found a good combination of medications to keep the seizures under control.
Since then she has had 3 major surgeries on both her hips and her back. Her hips dislocated cause of her muscles being so strong they over powered her joints. The last surgery was on her back. She was physically 120 degrees out before the surgery. Now she has 2 rods on both sides of her spine which has brought her almost back in alignment.
When she was born the doctors told me that she would die by the age of 1, but time and time again over the past 19 years she has proven them all wrong. She is always happy and when she giggles I know she is hearing her own tune and she knows the love she receives everyday.
My most recent tattoo is that of the 3E wheelchair heart within the word Love, to complete the statement a mother's love. This was done for her and for what she has taught me about life and most of all unconditional love.
She has 2 younger brothers who don't see her any different then they are. They embrace her , educate themselves with my help, educate others about her, and love life in general. They love to help me take care of her, read to her, talk to her, and sing to her.
She has become my voice to educate others about her CMV and explain everything we go through. I don't know what I would do without her in my life. She is my angel in the dark when I don't think I can handle what life throws at me.
I have met some great people through our journey, teachers, doctors, other children. It is just great to know and have known these people in my lifetime. I don't think I could ask for anything more.
