In April, our angel, Amanda was born. "There is something wrong with her back", the Doctor said right away. I barely remember seeing a bubble on her back about the size of a dime. Not very overwhelming or scary to me (yet) but she was quickly whisked away from me.

Then we heard the words "spina bifida" for the very first time from her pediatrician. She probably won't walk and she won't have control of her bowel or bladder functions. She will need to go to Children's Hospital in Seattle for surgery to close the "bubble" on her back. All I was worried about was her surviving the surgery. A "helpful" counselor was assigned to come talk to us about adoption and other options. I said to him, "no baby can walk or has bowel or bladder control. Right now she is just like any other baby. Please don’t bother us any more and waste our time which we could be spending with our daughter."

It took 3 surgeries and 1 1/2 months to get our baby home. We were so excited. That was almost 22 years ago. A lot has happened since then! Folic acid taken BEFORE pregnancy has been found to reduce the incidence of spina bifida. Most pregnant women have a simple test done now to see if their baby has spina bifida. This can really help the parents by giving them time to learn about this defect of the spine and have medical plans in place before the baby is born. Some studies have shown that a cesarean delivery can possibly cut down on some of the trauma to the nerves. Also, some parents choose invitro surgery to repair the back.

Amanda has not let her disability stop her from what she wants to do. This is the case with most of the kids I have met with spina bifida. Amanda has always done whatever the rest of the family is involved in. I remember lying in bed crying the night she was born, sad that she would not feel the ocean waves or sand on her feet. Well, she has felt the waves and sand. She would sit at the edge of the surf and crawl through it, laughing joyously. She probably had a much more 'real' experience with being a part of this awesome creation than the rest of us.

Amanda has ridden a tricycle, taken horseback riding lessons and participated in demonstrations, and is learning to drive a van. As a child, she went camping, and hiking (first in a back pack, then using her wheelchair), and loved playing with her cousins and neighbors.

Through school, she received physical and occupational therapy which helped her tremendously. Amanda can walk with a walker which she used throughout grade school. When she started Jr. High, Amanda chose to use her wheelchair more often. She would go to many after school events and especially loved to go to the dances. I always thought her very brave to go to the dances alone but she would sometimes go with friends. I heard from many people that she can really spin and dance in that chair! See the picture of her at the Senior ball with a good friend.

Now, here she is in college. She wants to be a sign language interpreter. She loves to swim and work out at the Y on the weights. Amanda has done volunteer work for Good Samaritan Hospital day care and currently works at the Children's Therapy Unit where she received years of therapy. She often does volunteer work for the spina bifida support group with typing, making the brochure, and organizing the ESBA library.

The time has gone so fast watching her grow up. Yes, there have been problems and obstacles on the way. A bowel/bladder program had to be worked out, accessibility problems, scoliosis (which included another big surgery to put a rod in her back) and some learning disabilities. But, all these issues can be and were worked out. She graduated high school with a 3.47 GPA. Her whole family is so proud of her and her hard work, dedication, patience, contributions to society, loving attitude, and so and so on. Amanda does not want people to feel sorry for her. She doesn't brood on her disability but enjoys her life and we are all blessed that she is a part of our lives.

Amanda's mom
Ronda Henry