Being a "Special" Parent

I wanted to give you, the bloggers, a glimpse of what it means to be a parent to a special needs child. This isn't a pity party blog as I actually feel blessed to have our son. I hope this will enlighten your concept of us "special" parents. Our son has hydrocephalus also known as a water baby. His brain produces too much spinal fluid in the brain area so he has a VP Shunt to siphon out the excess fluid and dumps it into his perinea area (abdomen). This was discovered during an ultrasound at 33 weeks. I was being monitored monthly through ultrasound as he had developed bladder reflux while in utero. His bladder when emptying will back fill into his kidneys. Not a good thing since the bladder is the garbage dump for your body. During this, the neonatologist discovered the hydrocephalus. We don't know how it happened even though they took enough blood from me to do a hundred or more tests.

At 36 weeks, they performed an emergency c-section because his head had grown too much in one week. He stayed in the NICU for five days and came home for 2 and went to MCV at 9 days old to be shunted. He hasn't had any revisions or failures. Since his shunt was placed in the worst area of the hydrocephalus, it affected his speech and gross motor skills. He has been in therapy (speech and physical) since he was 6 months old.

Now on to the present. C is now 4 years old and walks with a walker along with leg braces. He has the brightest red hair and the bluest eyes I have ever seen. His speech is at a 3 year old level and he comprehends at a 5 year old level. He is an awesome child. He is joyful in everything and always has questions. He attends a special needs preschool in Colonial Heights and they are awesome. When he started the program at 3 years old, he was at a 17 month old speech level and crawled to get from location to location. In one year, he has grown so much developmentally.

As a parent, I want to assure you that we always prepare for the worst and hope for the best. We don't have a cookie cutter life. We get the roller coaster life. When he gets sick and has a fever, it usually means a stay at the hospital to ensure that the infection doesn't get to the shunt. He won't play anything that could cause head trauma so no football scholarships in our future but I don't think Bill Gates ever played football and he didn't turn out too bad.

When you see a special needs child, its ok to ask questions. Its ok to look and its ok to accept. We don't mind educating people and we love to hear about your kids too. We have 2 older children ages 8 and 6 who are able bodied and are considered to be bright children. They have learned compassion and they encourage others to do better. They are truly encouragers.

If you have a special needs child, feel blessed. God chose you over everyone else because you have the unique ability to bring your child to his fullest potential. I will also tell you that if it wasn't for the hydrocephalus group on yahoo, I would have been a basket case. They were enlightening and encouraging. I met online people who had children with hydrocephalus as well as adults who were either born with it or developed it due to a head trauma. No one had the same results. Its all dependent on the type of person you are and the medical treatment that you receive. The Hydrocephalus Association also led us to our neurosurgeon and now that he is retiring, I look forward to continue working with his replacement as he has been with our son since C. was born.

I will sometimes look at families and see them with "healthy" children and I admit at times I feel sorry for myself because I have never experience that in my entire life. Its God's wish that I have C. and I now understand why. I've been trained since birth to be able to handle being a special needs mom. My brother who is 1 year younger than me had a stroke while being born and due to that he is mentally retarded.

Being a "special" parent is a rewarding and sometimes frustrating life but you know I wouldn't trade it for a "Barbie and Ken" family. It just wouldn't be the same.

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