Several years ago, I wrote a fairy tale. Today, I share it with you. I will never forget the day that Mike and I found out that Evan had spina bifida and hydrocephalus. It's just one of those heart stopping moments in life. When I look back and see how far we have come and how much Evan means in my life, it is amazing. It has been a wonderful journey that I would not have traded for anything. I hope you enjoy the following, it was written from the heart. Sorry for those of you who have seen this before.
A Fairy Tale - Our Family Story
Some Fairy Tales are True, and Do End Happily Ever After...
Once upon a time there was a very big happy family. This family had two bouncy mischievous boys, three girls who were much calmer than the boys, and a mom and a dad. One day the mom and dad had some exciting news to share with the children. They gathered the family around and shared the special news that in eight months, another child would join the family. The news was accepted with joy, for babies are indeed special!
The Mom made sure that she took good care of her body, just as she had done with all the children. She wanted to be sure that the child growing within her would have a healthy start to life. One day, a few months later, a most dreaded phone call came from the Doctors office. The result of the AFP test the Mom had taken was abnormal. The Mom would need to have furthering testing to check out the validity of the AFP test. At first the Mom and Dad just thought, "Oh, maybe we have twins, or maybe the due date was off." They really did not want to think that their new little one could actually have some kind of dreaded birth defect.
They traveled far from home for these special tests, an ultrasound and amniocentesis. They first met with a special person called a geneticist, then they went into a room where a special doctor was who would take the ultrasound, the Dr. talked to the Mom and Dad, for a while.
The doctor begin the ultrasound, and then all got very quiet. The Dr. had a very concerned look on his face, the Mom and Dad were certain that things were not all well with there new little one. The silence went on for what seemed like an eternity. Finally the doctor spoke. What he said was hard for the parents to comprehend. The ventricles in the baby's head were enlarged, and its spine was open. He said the baby had something called spina bifida.
The parents were shocked, even devastated. How could this be?? They went home and cried buckets of tears, and tried to explain to the children why they were so sad. As extended family members and friends heard of the news an amazing thing began to happen as the family felt the strength of others love, support and prayers. The sadness turned to determination to do all they could to help this little baby. It seemed a very long five months to await the birth of this baby, filled with learning new things about spina bifida, and doctors appointments.
The Mom and Dad found the medical community to be very negative as they told them all the worse things that spina bifida could do to a baby. They said that this baby could be a burden to this family because the baby may not be able to walk and may be mentally retarded. They even went so far as to suggest that the pregnancy be terminated. But the Mom and Dad had unconditional love for all their children, including their new little unborn child. They very much wanted him to be a part of their family, although they were sad that he would face so many challenges in life.
On August 27, 1987, Evan Neil was born into this world. His name was very special because while the name Evan meant challenger, the name Neil meant champion. He was born one month early because he was not growing well inside and needed medical help. He was a tiny baby he weighed only four and a half pounds, but he was indeed beautiful. They were filled with an overwhelming love for him.
Evan was very sick and at three hours old a very special doctor called a neurosurgeon, very carefully closed the opening in the Evans back and placed a special tube called a shunt in his head. The Mom and Dad spent all the time they could with Evan, caressing him, rubbing his shoulders, whispering to him, comforting him and letting him know of their love for him.
After seventeen days in the hospital the most joyful day of all occurred, as the Mom and Dad brought little Evan home for his brothers and sisters to welcome. It was wonderful to be away from all the noise, and tubes and needles of the hospital. Finally little Evan was with the family that would love and nurture him.
Sixteen Years Later....
Evan is growing and thriving. He has NOT been a burden to his family as some would have thought. He is a joy and a delight to his family. He is one of the happiest children they have and he laughs with his whole body. It is a very wonderful, contagious laugh. He does walk, although it is slow and takes lots of energy, it is different than the way most people walk because Evan must wear long leg braces and use a walker. The very most favorite way Evan likes to get around is in his wheelchair, it is much faster than walking. Evan struggles sometimes in school, but he is smart and learning new things all the time.
The family has learned a lot from Evan. They have learned that it is okay to do things differently, that each of us is unique. If they look for the good in others they will find it. They have learned that it is possible to be brave and courageous in the face of adversity. They have learned that a positive attitude is so very important. They have learned that the most wonderful miracles occur in our hearts as we became accepting of things we can't change and do not let our hearts be bitter. They have learned that when families stick together wondrous things can happen. They have learned the importance of faith and prayer in this life. They know that our lives here on the earth and precious and fragile.
The family has faced new challenges now. The Mom has had to cope with cancer in her life. But she knows that all we be well. She has a wonderful example in her life to look up to, to help her be strong, and brave and courageous and have a positive attitude. He is younger and smaller than her, but in some ways wiser. His name means challenger and champion and he is indeed a champion. and they will live happily ever after.....