THE BOY WHO SEES RAINBOWS
Great storms may chase across the sky and cause profound damage and challenges. Once they pass however, they can be followed by the most inspiring and hopeful rainbows. Storms may not only wreak havoc on the earth but can rage in a brain. When these electrical storms strike in a person they are called seizures and just as in nature they can tenaciously destroy. But curiously they can also be followed by the most amazing rainbows of the mind, of the heart.
I have a little eight year old son named Ammon who sees real rainbows. He is a child whose mind is literally filled with storms, storms of electric energy that interrupt his brain and cripple his life BUT he sees the rainbows too. What a gift for him, for us.
Knowing Ammon has changed the way I view the world. Did you know that we are surrounded by the rainbow’s symbol of hope and comfort? I had never noticed until Ammon came into my life and made me aware of the colors that permeate our world.
Ammon can see these prisms of color in a bag of marbles, in pools and splashes of water, in the twilight sky and in his dreams. I can tell about the dreams because of the giggles that emit from him during his sleep.
One day I had to reprimand him and I hurt his feelings. His face crumpled and the weeping began. Through his tears he beseeched, "Ammon’s rainbow....where is it? Where is it" He longed for a rainbow to bring him comfort. May I always look for the rainbows.
Ammon’s ability to see the beauty means he often misses the ugly or the scary. After a joyous trip to the courtroom to finalize another child’s adoption, we exited to find a long row of convicted felons in their bright orange jumpsuits and shackled hands waiting to stand before the judge and learn their fates. Ammon reached out and warmly hugged each man as he passed. By the looks on many of their faces it had been a very long time since someone showed them pure love and gave them a tender touch.
Sadly, the storms in Ammon’s brain have profoundly injured his brain and cause us who love him continued worry. We know that there will come THE BIG SEIZURE and he will be taken from us. The storms in his brain will end because it will die. He will die. While he is alive we are determined to allow him to LIVE.
One day I was summoned to the school. Ammon was again having a major seizure. When I arrived at the school he was still forcefully jerking, choking, and seizing. It had been 30 minutes since it began. I administered a second dose of valium, bundled him in the car and raced to the Emergency Room at the hospital where they escorted us immediately into a room. After 50 minutes, oxygen and more medicines he finally stopped seizing. That was so long to be compromised and for his brain to be misfiring. This is how the storms ravage his brain.
We are well known at the hospital but that day there was a new nurse. She asked about Ammon's medical history. We had to explain that we know nothing of his birth history or first years of life because he was abandoned as a baby in rural China. The nurse got teary and responded, "Oh, he is such a handsome boy. What you have done is a very good thing. Everyone needs someone to love them."
That comment has stayed with me. I know what the nurse meant, and I recognize that Ammon is very blessed to have a family but I keep thinking that when it comes to love, Ammon is the teacher. He is the one whose face lights up like a billboard every time he sees people he loves. From the moment he meets you he is your friend. He is the one who makes sure everybody has been hugged and kissed before bed and multiple times during the day. Each of us needs Ammon to love us. It’s a very good thing what we have done because we need HIM.
It hasn’t always been easy being Ammon’s mother. In fact, it is the hardest thing I have ever done. Ammon has the mental ability of a 2 year old child. Just like any two year old, he does not share, he throws tantrums when he is angry or frustrated, he cannot wait his turn, he is very stubborn and he does not speak. He requires constant supervision due to his seizures and delayed cognitive ability. He attends a special education classroom at a regular public school with other children who have significant special needs. He is now able to have recess, music and art time in the regular classroom. He has learned all his letters, numbers and how to write his first and last name! We now have hope that he may someday learn to read. We are very proud of his desire to learn.
In 2010, Ammon had surgery to implant an electrical device in his chest called a Vagal Nerve Stimulator (VNS). This device sends out electricity to his brain through his vagal nerve so that his brain does not have to go looking for electricity and cause a seizure. It has not stopped the seizures but each month we go to the pediatric neurologist who increases the strength of the VNS. Someday we hope that the device will control the seizures but it might never do that completely. He takes 11 pills every morning and night to keep the seizures from coming, but they still come and ravage his brain. We have tried every child seizure medication approved by the FDA. We are on the last medication now and if there was another option we would be moving towards that. But there is no other option. We are at the end of options. But, we are not at the end of hope.
There will come a day when Ammon will leave this earth and scamper onto new adventures in a body that is whole. He will take with him the love he perfected here and leave behind him an eternal trail of rainbows. Oh, how we will weep. How we will miss him! But we will find within us dancing colors of light that will touch us with hope and wrap us in comfort. We will see, we will feel rainbows.
