Spring is always an exciting time for me. The anticipation of new projects and the excitement of another garden always thrills me. However, this year, I am especially looking forward to March 20 and the spring equinox. In many cultures' calendars, the spring equinox marks a new year, just as January 1 is the beginning of our calendar year. For thousands of years, in different places and in different ways, people have celebrated spring as a time of new beginnings, when the land and our spirits become alive again. I think that this applies well to my family this year. We are ready to toss off the coats that we needed this cold, dark winter. We are ready to fully embrace the possibilities of new gardens, new interests and new directions.
We have spent much of the winter working on building a new wood working shop for Sy. We needed a big project to focus our attention. Sy has been instrumental in creating this diversion to keep everyone focused in a positive direction and ensure our hands and minds were not idle. As a result, we have a lovely new shop that is almost completed.
We have been quite pleased to see the shop emerge as a community project. It became something like an old-fashioned barn raising. There was hardly a day that went by that someone did not drop by to lend a hand on this project. Sy and I firmly believe in the value of giving into your community. We try to live a giving life and hold onto a faith that our community will be there when we need them. Regardless, we have been touched by the amount of love the community poured back into us within the walls of this workshop. At present, I estimate about 20 different folks have come by at some point to lend a hand. When we neared the end of building this shop, we had run low on funds. We did not have enough left for the metal roofing. Our community stepped up, pooled their resources, and purchased the roof for us. We realized an important lesson with this act.
We knew that this project was more than just a diversion for us. It had become an opportunity for our community to pull together, work on something as a group and spread some love. We knew that this building had impacted and taught many people, and it was not just a blessing for us. Our dream is that this building will become a place that the community can gather, learn, teach and share. We want it to be a place where opportunities are not squelched by economic status. We hope to provide a workshop for people to freely come and work on projects or get help with a current creation. We want to see this workshop as not just our workshop. We want it to be a destination for everyone.
Now the spring equinox emerges. It is a time of new beginnings. We have a new workshop to embrace and fill with tools. We have a new garden ready to be turned and seedlings to plant. But most importantly, we have hope. And sometimes that is worth more than everything else.
Thursday, September 4, 2014
We have spent the past week at a small cottage on the Outer Banks of North Carolina. It has been a week of distraction and a step away from a home filled with memories and reminders of our lives with Avyn. It has been another step of healing for my family, and yet today I must return and face my piles of baby clothes and blankets.
This morning I got up early to watch the sunrise by myself on the beach. It was a special morning of reflections for me. This morning marked 2 weeks since Avyn left. Somehow, although I knew the sun would continue to rise, it seemed hard to swallow. I imagined that the moment his heart stopped beating, the world would stop turning for just a while. Everyone and everything would pause to honor him, and then when I was ready, the earth would turn again. However, that is not the way life moves. The sun continues to rise and set, the bees continue to bring in goldenrod pollen, the birds sing, a school of fish flees from a dolphin, another dolphin dies and washes up on the beach and the circle of life and death continues. As earth shattering as Avyn's death was for me and my family, in the bigger picture of life and time it was just a drop in a very large bucket.
I still find the majority of my day consumed with thoughts of him. I replay memories over and over in my head so I won't forget them. I focus hard and try to remember all the ways he smelled during his months with me. I remember the sweet new baby scent, the stink of a very chubby 2 month old with hard to clean folds, the sweet smell of frankincense during his nightly massage and the yeasty, sweaty smell of an SMA babe. I miss them all. I miss his soft head and the feel of his body against me for so many hours of everyday. It is still hard to believe that life will eventually return to normal, and yet I watch the sunrise and know that eventually, for me too, the earth will turn again.
However, for my family, the world will never quite be exactly the same. We have been changed in so many dimensions. Life is more fragile, more sacred and more beautiful. It is something that we all examine closely now. My children will grow up with a reality that I never knew as a child. Sometimes babies die. Sometimes physicians and therapists can do nothing. Sometimes, no matter how much you love someone, they still have to leave. It is a reality that I still question and ponder again and again. We also have a new reality. We have memories of a sweet soul that was given to us to briefly hold and enjoy. We have new lessons that we have learned and skills we have gained. As painful as this journey has been, I would never ever want to have missed it. The amount of learning and growing that we have all done is invaluable. The memories that we have are precious. The gift of love we have experienced is immeasurable.
Sunday, April 13, 2014
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
Thursday, April 10, 2014
I am writing today’s blog post from Granny’s new house. Granny is sleeping peacefully in the bed beside me and Avyn is napping on his tiny mat on the other side of me. So, how did we get here after working on Anna’s house? Life jumped in and made things interesting once again.
A couple weeks into Anna’s house project we got a call from Sy’s Granny. She was not able to care for herself and needed some extra help. So, Anna’s house was put on hold temporarily, and we began to build another house for Granny to come and stay with the family here in Arkansas. I will spare all the details, as most of the building was similar style to the other house project. I will however, include some pictures of Granny’s new abode. It is a little “L” shaped building with a cute porch and a cozy, well insulated room inside.
Granny rode up the driveway in mid-March waving to all of us on her way up to her new house. Meanwhile, Sy and Aesa were hustling to laying the flooring down. She had to wait a few minutes for the floor to be finished and then we moved her right in.
Saturday, March 8, 2014
Well, we had a few good snow days and that slowed the house progress down. The kids were not slowed down at all, and they have been enjoying the snow immensely. Check out the handmade sleds-- These were made with PVC pipe and some left over job site scraps.
Wednesday, March 5, 2014
Choosing a house site is always a very important part of the process. There are many things to consider. For this particular house, the site was chosen because it was convenient to water and had relatively easy access to the site by car. However, it is also on the side of a hill and so finding a spot that was flat enough was a challenge. The site was chosen and a path was cleared to it by Grampy and his crew of kids.
We used local cedar trees on rock foundations for the base. The kids and Chris brought the trees to the house site and stripped the bark off the ones that would be used on the interior. Sy and Aesa laid out the floor and began nailing it together.
This particular project has its own set of issues that we have had to work around. For one thing, the house site is on the top of the hill. We can drive somewhat close to the site, but not with a trailer full of wood. All the building supplies must be carried in. There is no electricity at this house site yet, and so the majority of the work is done by hand, with a chainsaw, or done elsewhere and carried up to the site. We have a financial boundary, and the house cannot cost more than $2,500 to build. We have used as much local wood as possible and salvaged lots of parts such as the windows. Lastly, we have a time restriction. Sy and I need to be back to Virginia by mid-March to get gardens planted and begin to prepare for our market season. We need to finish this project in less than 3 weeks. For this reason, we have chosen to purchase some of the lumber instead of milling it ourselves as we normally do.
This house is located on a beautiful mountain side. We have given it a large porch and lots of windows from which to enjoy the view. Anna and Chris have two children, Leah and Raylon, so we have incorporated a large loft area with dormers and six upstairs windows. This will be the sleeping area. So far, the project is coming along well and everyone is enjoying working together on it.
Saturday, March 1, 2014
It is really hard to begin blogging again after you have abandoned it for a period of time and the enthusiasm has waned. However, I do still feel it is important, and I will attempt to skip the excuses, move past the reservations, and continue with my blogging. These first few entries will be easy. I have lots of family and friends that are pressuring me for information. They want to know what in the world we are up to hiding out in a school bus in the Ozarks. And so, I begin to disclose our latest project….. “Transfer Anna and Family to Mountain Life.”
This past fall we took a 1996 International School Bus and converted it into an RV. (Yes, this project deserves a blog entry and perhaps one day I will get up the inspiration to complete one.) We had marvelous ideas and lots of plans for the RV. However, life sometimes takes you in directions that you had not planned on, and that was the story of our winter this year. We were unsure of our plans, when Sy’s sister, Anna, called and said she needed some help. She wanted to have a life change with her man and their 2 kids. They had decided to move to Arkansas and build a home on the family property there. Now we had a plan and a direction.
Within just a few days, we had the bus (aka The Rambling Bounder) heading south towards Florida. We loaded all Anna’s stuff onto the top of the bus and began a journey to Arkansas. It was a full adventure -complete with a dog, a cat, a rabbit, 2 birds, 7 kids and Sy and I. (This also probably deserves another blog entry). Now we are settled in and working away at building a cabin for Anna and her family.