Here is a letter I received from another family living with the struggles of Spina Bifida. If anyone else is interested in posting their stories, we would love to hear from you
Hello. My Name is Lisa, and I am 25 years old. My Brother, Jamie was born with Spina Bifida (Myleomeningeocele) and Hydrocephalus (also Arnold Chiari 2 malformation). He has social anxiety in most environments, and is very sensitive to loud noises (sometimes causing aggression - to deal with the automatic pain he can't control)
When my Mom found out that her baby had Spina Bifida, she was nine months pregnant. She had a very difficult time when discovering her baby would have health complications.
Jamie had surgery to close his spine shortly after birth, then had his first shunt insertion. Mom became worried about Jamie's breathing, so she notified the doctor, and the doctor said it must be croup. After a month, Jamie's breathing was getting worse. They later found out (the doctor misdiagnosed him) his shunt was infected and the doctor's then rectified the problem, yet the infection caused more irreparable damage.
Although the doctors didn't think Jamie was going to live that long, he is now 19. So although he has fought the odds, as of now, Jamie has chronic kidney damage stage three), he is on a feeding tube at night (to help him gain weight - he weighs 80 lbs), underwent two spine surgeries (to prevent further scoliosis), and needs to be catheterized every four hours. My Mother and I are his primary care givers, and it has been much more complicated lately.
My father has been an alcoholic for as long as I can remember, and it has gotten worse.
My mom and dad divorced when I was four, and then got back together (for the kids/to make things work situation), and had my brother when I was six. Dad continued to drink, while Mom did all the care giving. Mom and Dad have been from common law to separated for as long as I can remember, but Dad's drinking, verbal abuse and previous assaults on Mom has greatly affected my mother's decision to make things better.
She told Dad to leave in January of 2010 and he now spends his days drinking and partying with friends and neglecting the roles of father hood. He is not helping with bills, or any kind of care for Jamie, which in turn has left my Mom with nothing as she doesn't work because she has enough on her hands to take care of Jamie.
Just recently, Dad came out to pick up some things and intentionally pulled the plug on Mom's deep freezer (a week later she discovered that all of her frozen food was rotten and had to be thrown out). A few years back, Mom and Dad bought Jamie a golf cart for the yard, to have fun in, and the last time Dad came out, he sneakily cut the wires to the golf cart so it won't work. I don't know why he would do these things, but I can't change how he is.
I have lost all respect for my father, but wish him the best in life.
Mom is scared as she has no idea what the future holds. The house is up for sale as we speak and I truely hope things do get better for us.
Mom doesn't drive, so I moved closer to her into a small 1 bedroom apartment and am the main transportation to Jamie's hospital visits, doctor's appointments, and Mom's diabetic appointments too. I don't have much for a vehicle, but make do with what I have and what I can help with.
Sometimes I wish I didn't put my life on hold so I could have helped Mom and Jamie financially, however, I could not replace the time I have been able to spend with my brother since it is impossible to predict how long he has. I made a choice, I chose to put my career on hold to be with my family. Although sometimes I wish things could just be easier for us for once, I'll always love my Mom and brother very much and I just pray that things will get better for us.