Having a child with disabilities.

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I have a six year old daughter with cerebral palsy,epilepsy,developmental delay and only one kidney. She was born dead and was resuscitated,when she was brought back she began to have seizures. She spent 3 weeks in the NICU at the local University hospital. They told me within the first three days she wouldn’t make it. She made it but it was a hard fight. During the second week in the NICU they found this dimple on her back(I have the same thing kind of like a birth mark) and decided to do a spinal tap. When that came back normal they did a ultrasound and found she had multi cystic kidney disease,and said that the kidney would quit working and either disappear or have to be removed surgically.They finally let her come home when she no longer need the feeding tube. She came home before Christmas. She took seizure medication until she was 5 months old. She went to early on programs at the local school where we live and it helped her learn to walk,talk and feed herself. The kidney disappeared on it’s own and her other kidney is now working well.When she was 3 her seizures came back and she has been having them ever since,despite all the different medications that put her on. By the time she was 4 myself and the teachers all knew something else wasn’t right,it wasn’t until then that my daughter’s doctors finally admitted that she had cerebral palsy. She does more than the doctors ever thought she would but everyday is a struggle. At 6 she isn’t fully potty trained,needs help feeding herself,walking with the aide of braces and needs a para professional at school to help her do school work.
Being the parent of a special needs child is a 24 hour job. Many in my family will not take her on over night stays due to that is when her seizures happen,when she is asleep. So I really never get a break except for the time she is in school.
Kids and adults alike can be cruel and harsh towards my daughter and her sometimes bad behavior.
But I thank God every night for her being in my life.


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