Like a lot of people, I am afraid of spiders. A tiny spider skittered across my desk only to be crushed by my workpapers as soon as I noticed him out of the corner of my eye. Every morning when I get into my work car a beautiful, complex spider web stretches from the driver’s side mirror to the door. Using my key, I slice it right through the middle out of fear of the fella being blown into the vehicle by the wind and landing in my hair. Despite my efforts to destroy the spider web every morning, I return to find another web built in the same place.
My son knew what he would face each and every day over the last year and a half of his life – routine and pain. He knew he would have to deal with pain most of the day but he still didn’t complain or become angry. I rarely remember Christian feeling sorry for himself. He continued to read until his arm became too tired to hold up his iPhone and he made the best choices he could for his health until the end.
Imagine going through all of the effort to create something so complex and beautiful, only to have it destroyed 24 hours later. Once I really started to think about what this spider was doing, I couldn’t help but wonder what would happen in my own life if I had the same resilience and determination as this little eight legged critter. Most of the world’s greatest inventions were created out of failures – the telephone, the boardgame Monopoly and cures to diseases. What about people who have to endure several rounds of chemotherapy, knowing after each one what they have to face and that it can make them feel worse each time?
What are your dreams and goals? Are there ways you can prepare for these dreams by doing a little each day? I hope to write a book one day that will hopefully inspire people, especially those living with the daily challenges and heartbreak of Duchenne Muscular Dystrophy. Sharing my thoughts and my heart with readers on my blog is one way I am preparing for my dream. I have wanted to give up more than once – doubt, fear, a tight schedule, or when I just can’t seem to get my sentences straight. Two things keep me going – hope and love. I have hope because I know that God helps us become all we can be in life, especially when we can help other people. I also know that anything that is done with love in our hearts will ultimately succeed, no matter how many attempts it takes. Love is all that matters and is contained in all things, even the spiders.
*note – I had a little trouble with the caption above but am posting regardless. I apologize if it looks odd. We keep on keeping on right? xoxo
I went for a walk this morning on the River’s Edge Trail, which runs along the bank of the Missouri River. The leaves were glowing a brilliant yellow and several birds flew ahead of me along the way – a magpie, a robin and a chickadee. The way the sun hit the trees on top of the hill and how it caused the foilage at the side of the trail to glow took my breath away. I am almost overwhelmed at times with the beauty of God’s creation. Since losing my son in 2014, I see things with different eyes. I went on a walk with a friend who also lost a son, and we agreed that it’s almost like layers have been peeled away and everything we see is blindingly beautiful compared to how we saw it before.
There have been many days over the last year, however, when I have been engulfed in darkness. I have experienced the dark night of the soul and experienced pain so intense that I just couldn’t stand being me. During the first year after losing Christian, I did what one of my grief books recommended, which was to lean into the grief. This meant that I cried the tears I needed to cry and felt what I needed to feel. I leaned on God constantly, read His word more than once a day for a while, and prayed often. He has done a great healing in me that I will never forget.
The darkness set in during the second year. Taking care of my youngest son, Andrew, although difficult to do while processing the tragedy of losing Christian, gave me purpose and something to focus on. I still felt important and needed. When I returned to work after over 10 years, everything I had ever believed about myself was dramatically changed. All of a sudden my husband was taking care of Drew, cooking meals and cleaning the house – things I have done since we married in 1992. Suddenly I had no idea who I was.
Rather than turning to God in prayer and to His Word and reaching out to supportive friends, I turned inward and started defining myself by how the world viewed me and by what I did each day. I felt unimportant and lost. I stopped blogging because of the fear of what people would think if they knew I was in so much pain. I didn’t want to be a downer by writing about the darkness and sadness.
The truth is that without darkness, we are unable to learn what needs to be brought into the light and healed. The pain and difficulty we endure becomes life experience, and although we would rather aviod it, we can use it to help others. Sharing my broken heart can actually help someone else who is going through their own personal tragedy.
As much as I want to be done grieving, I am not. As Marianne Williamson states in Tears to Triumph, “it (grief) is a process – not an event- best served when we surrender to it fully. Grief allows us to process incrementally what might be too shocking to the system to have to process all at once.”Tears are nothing to be ashamed of, especially when they are for someone we cherished and loved so much who is not longer with us. They wash away layers from the heart and help us to see everything with new eyes. As I continue to cross this vast sea of grief, I will share the lessons learned and the things that God wants to show me in hopes that I can help others know that no matter how deep the sadness, there is a light at the end of the tunnel.
Today is World Duchenne Muscular Dystrophy Day. This is the first year I have heard of a day being devoted to DMD and perhaps it has to do with the Jerry Lewis Telethon no longer being aired.
Most people do not know what Duchenne Muscular Dystrophy is. Many people have mistaken it for Multiple Sclerosis, which is also a neuromuscular disease but is not the same. DMD is a genetic disease when muscules are missing a protein called dystrophin. Without this protein, muscles cannot fully develop and they eventually start to deteriorate. Unlike other types of MD, Duchennes attacks muscules all over the body, not just the legs. The arms become weak, along with shoulder, abdominal and back muscles. Being the monster that this disease is, it also goes for vital organs, such as the heart and weakens muscules that help us to breathe, such as the diaphragm. Many boys succomb to the disease from pneumonia or heart failure. As back muscles weaken, scoliosis sets in, making surgery necessary. Without spinal fusion, which is very risky and involves a titanium rod being put into the back so it can be kept straight, the spine continues to compress which makes it difficult to breathe and puts stress on the heart. Many of the boys have to use ventillators to aide in breathing earlier on without the spinal fusion.
Muscles that we take for granted to aide us in our balance so we can sit up straight deteriorate making it impossible to sit on a chair without support. Without the ability to stand, many families use special lift systems to help transfer their kids from bed to chair and even to use the bathroom.
Duchenne MD takes on its full form in males. My mother has a more aggressive mutation of DMD and she has lost a lot of muscle in her legs and arms. She has fallen and injured herself and we are looking at making modifications to her home in the future to insure her health and safety. I have symptoms but they are not as severe as my mothers and I hope I can keep them at bay by being proactive with a plant based diet and plenty of walking. We recently found out that my youngest sister has the disease and it was passed on to my 10 month old nephew.
Duchenne MD, along with many other neuromuscular diseases, takes a tremendous emotional and financial toll on families. The spinal fusion surgery is a six figure procedure and a power wheelchair can cost well over $15,000.00. This doesn’t account for lost wages because unless a good caregiver is available, one parent has to stay home to care for their son. There are also regular visits to the cardiologist and pulmonoligist along with physical therapy.
We lost our oldest son, Christian, in 2014 to this disease. His heart became too weak and he had a great deal of trouble breathing. My other son, Andrew, continues to deal with the ongoing weakness and complications related to DMD. He has days when he is in a great deal of pain and most boys cannot take large amounts of painkillers because of the side effects.
The Jerry Lewis MDA telethon has raised millions to aide in research so we can find a cure to this disease, along with other neuromuscular diseases. It was heartbreaking to hear about the end of the telethon. We now have to think outside of the box for ways to raise more awareness and to continue to fight for a cure. There are several different methods being studied with some actually showing improvement for some of our boys. It still has a way to go but we must not lose hope. I, along with many other mothers and fathers that have to live with this disease every single day, do not want this day to be lost among the other fun, national holidays – National Hug Your Cat Day or National Pizza Day. Please donate to your local MDA events, such as Fill the Boot and the MDA lockups to support statewide summer camps and MDA Clinics. The clinics are very important, especially for people who live in such a spread out state like Montana.
We have had to watch the boys lose friends from MDA camp and in turn fear for their own future. I have created a Facebook group so us moms can support each other during difficult times and give each other ideas as the disease progresses. With enough awareness and scientific research we can beat this disease and give our boys hope.