When Chris and I started the adoption process we only knew 5 things about Graeme.
- He was male
- Born in 2016
- His Diagnosis was Spina Bifida
- He was in the Ukraine
- He was our son
We had no other information. We had no idea what type of Spina Bifida he had. We had no idea what his abilities or disabilities he had. Which is extremely frustrating when you are trying to prepare for your child’s life, once they are home with you.
I decided to do my best and educate myself on Spina Bifida. There are 3 types of Spina Bifida.
- Myelomeningocele – When a baby is born with a sac of fluid that comes through an opening in the baby’s back. Part of the spinal cord and nerves are in the sac and they are damaged. Myelomeningocele is the most serious type of Spina Bifida.
- Meningocele – A sac of fluid comes through an opening in the baby’s back also at birth. However with Meningocele there is usually little or no nerve damage. This type of Spina Bifida can cause minor disabilities.
- Spina Bifida Occulta – With this there is a small gap in the spine but no openings or sac on the back. The spinal cord and nerves are usually normal. Spina Bifida Occulta is the mildest type of Spina Bifida.
Researches can not tell you the exact cause of Spina Bifida. They can tell you taking Folic Acid will help reduce the risk of Spina Bifida.
The more I read about Spina Bifida the more it became clearer there was no way I would know about Graeme’s Spina Bifida. Spina Bifida is called a”Snowflake” condition because no 2 cases are the same.
Graeme has Myelomeningocele which is the most severe type you can have. A lot of people with this type of Spina Bifida have issues with going to the bathroom and need to be catharized m. They have loss of feeling in their legs or feet. Along with some not being able to move their legs.
On paper Graeme should not be able to do many of things he does. He has feeling in his legs and feet. He is ticklish on the bottom of his feet. He can stand up with assistance.
We still have a lot of big question marks with unfortunately more testing. Plus he just turned 2 so he is still a baby.
I refuse to listen to the Doctors when they want to set limitations on Graeme’s abilities. He has already proven he CAN do anything he sets his mind to. And we are here to love and support Graeme in anyway humanly possible.
Don’t let a Diagnosis define you!