I have dreaded writing this blog post for so many, many reasons. However, I have put it off long enough, and it is time for me to speak about the season of life that my family is currently walking through. As a gardener, I am well aware of the seasons. I know that we endure the cold and bitter seasons, and eventually they pass and we can enjoy the beauty of the warmer, easier seasons. I also know that without the hard seasons we cannot fully appreciate the joy that springtime brings. And so, I begin to share Avyn's story.
Avyn was born at home on September 2, 2013. Sy and I were alone in our bedroom when Avyn made his hasty appearance. It all happened so quickly that it was mostly a blur of excitement. However, when everything settled down, Avyn nursed heartily and all seemed normal. The next few days were pure bliss for me. I enjoyed being forced to rest, and for once in my life, I was completely content to do nothing but care for my new baby. After a few weeks, I began to return to my tasks with a new baby attached to me. He was a very pleasant baby with a laid back personality and easy demeanor, and so I was not concerned about him until he was about 2 months old. It was then that I began wondering why he was not moving as strongly as my other babies did. His grasp, his cough, and his strength all seemed weak. I kept putting my concerns aside. He was full of joy and plump as can be. Perhaps he was just a bit fat and lazy.
Christmas came and went and in early January my children all caught the RSV virus. While my other kids coughed, hacked and got better; Avyn struggled more each day. We ended up taking him to the emergency room and then to the PICU. He recovered very well from the virus, but the doctors were concerned about his lack of muscle tone. They began testing, and he was seen by a neurologist. I began to realize at this time that maybe something was very wrong. I thought perhaps he would be slow or disabled, but could not even fathom something worse. One doctor mentioned something called Spinal Muscular Atrophy, and I began to panic. However, I still was not ready to accept that something was seriously wrong with my sweet baby. One evening in the hospital, Sy and I decided to google more information about each of the diseases we had heard the doctors mention. We read about a few that did not seem to describe him completely. Then we began to read about Spinal Muscular Atrophy and with a sinking nauseous feeling in my gut, I realized the information was very accurately describing Avyn. I cried and I cried as I discovered more about this horrible genetic disease that has no treatment or cure. I began to understand that this disease would steal my baby’s strength bit by bit, and eventually he would no longer be able to breathe. I read that this disease is the most common genetic killer of all babies under the age of 2, and Avyn would more than likely not make it to his first birthday.
We left the hospital a few days later, mostly stunned and completely overloaded with information. Something in me still held hope that maybe there was a misdiagnosis. However, one cold, snowy day in January, I received the call that confirmed my fears. Avyn’s bloodwork had returned, and he did test positive for Spinal Muscular Atrophy (type 1). I spent the next few weeks shocked and depressed. Life seemed an impossible task. My worst fear and scariest nightmare had thrown themselves at me and knocked me flat on my back. Eventually, however, I began to realize that each moment we have with Avyn is sacred, and we needed to move on with life and enjoy each second with him. He has a smile that can warm even the coldest hour, and I was missing it while focusing on our hardships. So, I stood back up, took a deep breath, and began to live again.
We had worked all fall on converting a school bus into an RV, and we wanted to travel a bit this winter with our bus. We returned to this plan, with renewed energy and heavy hearts. Somehow for my family, hopping into a school bus and driving around the United States is comforting and normal. We visited family, saw new places, and filled our days with new memories. Avyn met 2 new cousins, one just a few days older than himself. He put his toes in the water of the Atlantic Ocean and climbed the Ozark Mountains. He sat around a campfire, played in the snow and felt the love of 10 second cousins on a small farm in Ohio. It was a healing trip for all of us, but Avyn only knew he was having a blast with his family.
We have since returned to Virginia. I am trying to just live our normal lives once again, remembering to treasure every moment. Today, Avyn is well. He is breathing and nursing fine, it is just more work for him than other children. He will probably never hold his head up or sit up by himself, but he has an awesome smile. He spends his days playing with his sisters, hearing music, and taking walks. He loves stories and clapping games. I give him a bath and massage every day and he enjoys the ability to move in the water when his body is weightless. We are extra careful to keep him from getting sick, but otherwise try to treat him just as we would our other children.
In every situation, no matter how bad, there is always some good that can be found. I struggled to see any positives here, but eventually I did find some. Avyn is in no pain. This disease has a hold of his body, but not his spirit. He is joyful and greets us with smiles all day long. He is happy with his life and has only known complete love from everyone around him. We are devastated, but he is simply having a wonderful time. Our family has grown in many ways. We treasure each other more, and spend more time loving each other. No longer is life taken for granted and every day is a new blessing. I feel we will all be more compassionate, gentle and understanding humans as a result of this trial. Avyn has taught every one of us so much, and I know he is not finished yet. We are all so blessed to be given the chance to walk down this road of life with him.
“It is not death that a man should fear, but he should fear never beginning to live.” Marcus Aurelius