Duchenne Muscular Dystrophy – The road less traveled

Goodbye Summer

Fall is by far my favorite season. It brings golden leaves, bluer skies, and cool breezes. After a summer dominated by smoke and fire, it was a great relief to see two days of rain and cooler temperatures. I looked out the window and noticed something different along with seeing a blue sky – the trees were swaying. It took me a while to realize that we barely had any wind since the heat and drought set in late June. The wind usually blows so much that we practically fall over when it doesn’t, so welcome back wind! I will try not to complain when you blow my hair all over the place!

With summer coming to a close and fall approaching fast, I wanted to share the highlights of my summer in photos. I went for a visit to Lewistown in June and enjoyed taking Mom to dinner at the local Mexican restaurant. I enjoyed several walks with my family, before the smoke rolled in, on the River’s Edge Trail. My husband and I celebrated our 25th anniversary by taking a trip to San Jose and San Francisco. We crossed the Golden Gate Bridge on foot and it was exhilarating. Finally, in August I was thrilled to see Drew in a tuxedo for the first time for my niece’s wedding.

I admit that the smokey skies made their way into my spirit. I forgot that the smallest of gifts are the most important: a mourning dove perched outside of the dining room window, the chatter of chickadees on my way back to the office, golden spots of sun on the floor, ceramic pigs strategically placed around my house by my neighbor for me to find, time with my husband on the couch watching Suits, and a smile from a coworker.

I came across the quote in the picture above during one of my morning meditation sessions. When we live in our heads, our lives can pass by unnoticed. We miss the bird placed on a branch in the perfect place for us to look up and see him. We miss the cloud in the sky shaped like a heart or the uplifting lyrics of a song. It’s better to let our fearful thoughts pass by like clouds in the sky than to end up underneath them for months, even years. Remember the cartoons when a character had a raining cloud over his head wherever he went? That is exactly what it is like to live in our heads. This is something I am guilty of and I have realized that life is far too precious to go by unnoticed for even a moment.

Next month will be three years since Christian passed away. The turning leaves take me back to the months before his passing and it can be very painful – like it just happened. As the day approaches I want to see the world as I would want Christian to see it – a miracle in process, given to us by a God who loves us.

A Necessary Truth

There are mornings when I am doing my regular Bible study when I come across something so profound that I will always remember it. I read a quote by Bronnie Ware from her book The Top Five Regrets of the Dying: “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Ware worked as a palliative caregiver. Palliative care involves the care and support of a patient faced with a life threatening or terminal illess. It also involves improving the quality of life for the patient as well as the patient’s family and friends. I had no idea such a word even existed until after my son passed away. I knew what hospice was but in my son’s final year of life we had no support and no one to even tell us what support was available to us. It was a fearful, traumatic time in our life and has led me on a mission. I have started to write a book about my experiences with raising two sons with Duchenne Muscular Dystrophy and losing my oldest son, Christian, to the disease. No one should have to deal with end of life issues on their own. So many physicians are in the dark about Duchenne Muscular Dystrophy and it is not uncommon for them to feel discomfort about discussing end of life issues.

A physician came to the house to examine Christian about a year before he passed away. He had nothing to say to me and later I received a copy of his notes from the visit – notes that did not even make sense. The closest thing ever said to us during Christian’s life that even came close to the reality of his prognosis was “you need to talk to the nurse about signing a living will.”

Christian’s passing came swiftly and without much warning. We were alone and had no idea he would be leaving us that dark Monday morning. Looking back over 2 years later, it hurts, but I know that harboring bitterness and resentment towards the medical community will not bring him back or ease my pain. I can only use this experience as a driving force to inform others that they do not have to face the eventual passing of a loved one alone and without the truth.

After reading Bronnie Ware’s blog post I realized that I am not waiting until it is too late to reach for my dreams and set goals consistent with my values. It is never too late to use my pain to ease the pain of others. That, ultimately, is my goal: to prevent others from having to go through the avoidable hardships that I’ve suffered.

Don’t Give Up

I have a dream of writing a book that will inspire and guide families living with the daily battle of Duchenne Muscular Dystrophy. I also have simpler dreams. I think that many of us do without realizing it. A simple dream can be to wake up each and every day filled with gratitude for another glorious day of life and going to bed each night feeling fulfilled and knowing that we loved and learned something knew.

The key to reaching our dreams and goals, despite the bumps in the road, is to never give up and to keep moving forward even when we feel afraid. I have heard it said over and over that courage is feeling fear but moving ahead anyway. Courage is overcoming our past and our imperfections and believing in ourselves no matter how many times we may fall and skin our knees.

When I think of courage and determination, I think of Rosa Parks, Maya Angelou, Steve Jobs, my mother who raised all three of us girls with little to no help, my grandmother who came to a new country and raised her children on her own, my sisters and my boys. I think of parents who put a smile on their faces and do the best they can for their families even though they feel afraid of a life threatening diagnoses.

No dream is ever too small because we are all part of a greater whole. Our contributions may be as small as bringing a smile to someone’s face, holding the door open for the person behind you or as big as inspiring millions like Martin Luther King, Jr. During his life, Christian was not able to join the football team or shovel the neighbor’s driveway (he had such a kind heart that I know he would have if he was physically capable) but he brought a smile to my face when I was most afraid. He inspired teachers and fellow students by going to class every day and completing his homework. No matter how much fear he felt he always smiled, loved and showed kindness.

I encourage you to never give up on your dreams. If enough of us do something every day that will make a positive impact on the life of another, we will truly change the world.

The Small Things

When I was a youngster, Thanksgiving meant Ritz crackers and cheese, mince meat and pumpkin pie made from scratch by my grandma, cranberry sauce, yams, turkey, rolls, olives and movie marathons. I always looked forward to my grandpa stopping by to drop off the pies and chatting with my mom over a cup of coffee. We never had any large family get togethers but it always included mom, dad, myself and my two younger sisters.

Over the years, as my nieces and nephews have grown and my sisters have moved away, we have had a few big gatherings. We would have a houseful – people sleeping in the spare bedroom, on the couch, air mattress and the floor. These were Christian’s favorite Thanksgivings.

kids-in-jovas-room — The boys’ favorite Thanksgivings were spent with their cousins.

Not even a month after he lost his older brother, Drew found comfort in spending time with his cousins during Thanksgiving.

For the last 2 years, the three of us have had a quiet meal while the fourth chair remains empty. We will visit the cemetery tomorrow morning and do our best to enjoy another Thanksgiving without our boy. Christian always loved and appreciated his Thanksgiving meal. He also remained thankful for the smallest of things until his last breath.

Every time I see something beautiful, I wonder if Christian is showing me what he always appreciated while he was on this earth.

I am thankful each and every day that I was able to take care of Christian for 21 years. I am thankful for the conversations we had while I cared for him, the things he did to make me smile and for the strength I had to care for my boys with little to no help. I am thankful for everything Christian taught me and for the things I continue to learn as I care for Andrew. When you care for someone who cannot leave the house because of their failing health, you learn just what we should truly be thankful for – a dove on the sidewalk, the warmth of a blanket fresh out of the dryer, a short visit from a dear friend, music, hugs, a birdsong, the smell of fresh coffee, a clean house or hearing the sound of the warm air flowing through the vents on a chilly winter night. The more I become thankful for, the more reasons I find to praise God. Praising God for the small miracles opens our hearts to the bigger gifts. Our lives become filled with peace and unexplainable joy as we carry Thankgiving into our everyday lives.

Fight for a Cure

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.

Me, my sister Sonja who is also a carrier and Damian who has been recently diagnosed with DMD

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.

Christian had to spend a great deal of his last year tilted to control his pain.

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.

God’s grace for the Race

Yesterday, I completed my first Island Challenge. The event took place in Lewistown at the Half Moon Ranch and it featured different events – a half-marathon, overnight bike ride and 8K/11K hikes. I signed up for the 11K hike. I am a natural introvert so engaging on such an adventure solo stirred up feelings of fear and doubt. I had thoughts of backing out more than once.

I woke up early and made the hour-long drive so I could have plenty of time to check in. I was not disappointed by the beauty of the ranch. There were cows greeting passing cars on the dirt road leading to the ranch and the rising sun brought everything to life. I arrived at the pavilion to the smell of bacon and pancakes. I checked in, pinned on my number along with the memorial pin of my son. The ranch is surrounded by mountains and wildlife so I enjoyed the views while I waited for the hike to begin.

When it was time to gather around the starting line I made sure to listen to the directions, especially pertaining to the split between the two hikes. The horn went off and I began my journey. We started on a hill and I slowly ended up in the back. I told myself that all I want to do is finish, even if I am last. I was looking forward to the solitude of being in the back.

We went uphill for over a mile and my heart was racing. My legs started to burn in places they usually don’t and the terrain became very rugged. I had to watch where I was stepping so I wouldn’t fall or roll my ankle. As we started to spread out more, I could hear the wind blowing through the tops of the pines. Everything around me was beautiful and so full of life and color, even the rocks and foliage along the side of the road. I made it to the first water station and was happy they had kleenex and fresh fruit. The oatmeal I ate for breakfast wore off before I even started the hike. We had a brief respite from walking uphill but another hill waited after the rest station. I attacked it with vigor and pumped my arms to give me a boost. Tendons I didn’t know existed were sore and I began to feel the weakness caused by the muscular dystrophy. I wasn’t about to let it stop me.

I thought of Christian and how he and his brother were never able to hike because their bodies became too weak once they were old enough. I thought of my mother and the pain she has endured from her legs giving out. I also thought of a co-worker who is battling cancer. I felt that second wind come along and I kept it up. I walked alone for a good part of the hike except for the marathon runners that passed occasionally. I came up on the 6K sign and realized I was over half way through. The second water station came a short time later and they said I had one mile left. I thought the nice man didn’t know what he was talking about. How could I only have one mile left? I pressed on further and approached a downhill slope that made me hesitate. I pictured myself trying to run down it and tumbling down for eternity like Chris Farley in one of his movies. I eased my way down and felt my quads burn like fire. When I was closer to the bottom, I let gravity help me and ran a short way. I slowed, went through a gate and I could hear cheering. I thought that was odd because I still had a way to go. The pavilion came into view and I knew something was off. I felt like I had accomplished something great, but 11k in a little under 2 hours? I crossed the finish line with a smile and a feeling of completion. It didn’t dawn on me that I went the wrong way until I noticed hikers with the 11K blue race bibs on cross the line that were in front of me earlier.

I have to admit that I felt disappointed because I signed up for the longer hike. I beat myself up a bit for making a mistake and missing that turn. I was very tired and sore after completing the shorter hike so I thought that maybe it was for the best. Next year I can try the longer hike.

I opened my devotional this afternoon and read about the grace of God. Grace is the evidence of his love for us which is freely given. It comes to us as talents, through other people or in ways totally unexpected and most needed whether we realize it or not. God wants for us what is best and sometimes it seems unfair. Although my hike ended up being 3K shorter than planned, perhaps He knew that I started off too big. My legs ached like they haven’t in years and I really cannot imagine how they would feel had I completed the longer hike.

I cannot change the fact that my legs are not as strong as I would like but God has given me the ability to keep walking and hiking, just not marathon distances. He has blessed me with a loving husband and a son who despite his prognosis, continues to do everything he can with what he has. He also blessed me with a son who kept fighting until his last breath.

Christian was with me on my hike walking beside me and he knows I gave it my all. For everything he lost and everything Andrew continues to fight for I will not give up, even if it means taking a path I didn’t expect to take.

The rose or the thorns?

We celebrated Drew’s 21st birthday at the Allegra in the Wynn. Chris Myers was eating dinner there and he wished Drew a happy birthday!

Yesterday, Drew had his 6 month checkup with the heart and lung doctors. Drew has Duchenne Muscular Dystrophy, a life-threatening form of MD that attacks muscles all over the body, including vital muscles like the heart and muscles that help us breathe. When we took Drew to see the doctors about 7 months ago, his numbers went down, so naturally we were nervous and afraid. To our surprise, the doctor came in the room, smiled, and asked me what I am giving Drew because his heart strength went up significantly. It was a blessing and a relief.

10991632_10200368380288399_8235321352078788452_o — When the boys were young, they participated in Eaglemount, therapeutic recreation for disabled kids & adults. Christian wasn’t afraid of the horses.

Not too long after receiving the good news, I kept wanting to ask about Christian. Why did he have to suffer so much? Why was his heart so much weaker? WHAT DID I DO WRONG? WEREN’T YOU PAYING ATTENTION? Most of the time, as I have been reluctant to accept, we will never fully understand or even know exactly what happened until we see our loved ones again in heaven. I believe we will experience so much peace and joy in God’s presence that it will not matter. Even when things go well and life gives me roses, I still want to hold onto the thorns. What will happen if I stop being so sad? Will I forget his voice, his smile or his strong spirit?

Part of healing is being thankful for each day and living each day as I know Christian would want me to live. I have had my pity parties and it’s normal when we are grieving, but after a while they actually do more harm than good. Complaining and being negative keep us from being all God created us to be and all Christian would want me to be. There were so many things Christian was not able to do and he accepted it most of the time. So many things that are mundane or even grievous to the rest of us were all Christian ever wanted. He wanted to work, run track and do the same classwork as the rest of the students. He wrote letters until he could not tolerate sitting up at his computer anymore. He tried reading the bible from front to back until his pain started and he had to spend most of the day tilted back in his chair. He did everything he could until his last breath that chilly October morning, which feels like it was yesterday and like it was ages ago at the same time.

I will focus on the roses in life and not hold onto the thorns. I will honor my son’s life by thanking God for the new day when my alarm goes off. I will be thankful that I can work and that I have my health. I will be thankful for clouds as well as sunshine, Mondays as well as Fridays, unpleasant people and sweet people, sour and sweet. I will live.

The Silver Lining

Too many people miss the silver living because they’re expecting gold. -Maurice Setter

When I got married, my husband and I had it all planned out – we would have careers, at least three kids, and we would be the best parents we could be (supportive, encouraging, and active in our children’s lives). The career part worked out eventually. We were young, moved a lot, and anyone who has been in the military knows how difficult it can be to adjust to civilian life. We had two sons and always did everything we could to keep the boys active, healthy and happy.

Fairmont Hot Springs 2003_0187 — We took a trip to Fairmont Hot Springs in 2003

When the boys were diagnosed in 2001 with Duchenne Muscular Dystrophy, our dreams started to shatter. Our boys never learned to ride a bicycle with two wheels, they were never able to learn how to drive, or able to participate in team sports. I worked at a title company for a few years before I had to leave to care for the boys due to the progression of their disease. I watched them lose the ability to walk, stand, raise their arms above their heads and I had to feed my oldest son during the last two years of his life. We had to constantly adjust to our new “normal” as the boys needed more and more help with the things most of us take for granted.

Towards the end of Christian’s life, I had more and more difficulty finding the silver lining. It was easier when the boys were younger – so easy to say it would never happen to us. “A cure will arrive in time.” “The disease will stop.” “If I take the best care of the boys that I can, even at the cost of my own health, I can make this monster go away.”

I became miserable because I was focused on the gold that we never found. I can look back now and see that Christian looked for that silver lining up until the last night of his life. He asked me that night if we could take a day trip to Lewistown. He still had hope.

Christian’s smile will always be a gift to all of us

After losing Christian and continuing to watch Andrew deal with some of the same issues and complications Christian dealt with, you would think that the silver lining would be gone for good. How can I see anything good come out of losing my son? What kind of person would that make me? There isn’t a single cell in my body that could possibly be glad my son passed away.

As hard as it is for me to admit, there is still a silver lining. There will never be gold, but I’m okay with that. What is the silver lining? It is contained in the little things – the things that Christian taught me to appreciate. Things like music, a bird on the feeder, sunshine on my face, a chance to make someone smile or laugh, the quiet moments during the day, a cup of hot coffee, being able to spend time with an old friend, or watching a good movie with my family. I can be thankful that Christian is no longer suffering and that he didn’t have to pass away at the hospital, that he will never have to worry about another doctor appointment again, or see fear in my face as I watched him fade, that he is with the Lord, that he is at peace, and that he will only know love.

It is far too easy to focus on what we don’t have instead of what is under our very noses. The all or nothing approach to life only leads to disappointment. What if we were to do our very best with what we have? Why not focus on what a person did right today instead of on what they did wrong last week? If we expect our lives to be perfect, we will miss the miracles – the miracles that surround us each and every day.

Jump!

A few days ago, my husband had me watch a video clip of a motivational speech by Steve Harvey of the Family Feud. Steve Harvey video He starts by saying that every successful person has one thing in common. They have all jumped. They took a leap of faith. They realized what their God given gifts were and they jumped in head first.

I truly believe that when each of us enters this world, God blesses us with certain gifts and talents. Some of us may have one, others may have 5 or 10. Once we identify our gifts, we need to jump. Steve Harvey said that the only way we can soar is to jump and pull the cord. Once we do, we have to be determined to keep going through the doubt, rejection and pain. Eventually we will come out on the winning side.

Think about the inventors of the past and how far they had to jump to create the light bulb, the automobile, plastic, or Apple Computers. One of the best biographies I have ever read is on Steve Jobs. Where would we be right now if Bill Gates and Steve Jobs didn’t jump? I wouldn’t be able to share my heart with you on my MacBook or even find a way to deliver it. In reality, most of us are not as brilliant as Thomas Edison, Albert Einstein or Stephen Hawking, but we can make a bigger impact than we think. It wasn’t smooth sailing even for the geniuses of our time. They jumped, overcame and soared.

We are all more capable of making a positive impact than we realize. My son, Christian, wanted to make a difference. He wrote a good part of a spy novel but stopped when his disease started to accelerate. He wasn’t able to join the football team or play basketball but he did play his clarinet until he didn’t have the strength to sit up and cope with the pain. He spent the last 18 months of his life tilted back in his chair but he still hardly ever complained. His courage and grace impacted everyone he came into contact with.

What about the rest of us? What are we capable of? I have come to realize that I have a knack for photography and writing. My sister overcame great obstacles to earn her G.E.D., becoming a volunteer fire fighter and EMT and is now in the best shape of her life. How many lives would have been lost if she never jumped? I encourage you to watch this video and to believe that God fulfills all of his promises. He wants us to soar. At some point, we have to ask ourselves if we are living or simply existing.

535890_2199036831741_1580093076_n — Despite the physical limitations of Duchenne Muscular Dystrophy, the boys earned their GED’s in 2012.

I can hardly think of a time when God did not get me through difficult times. After we lost Christian, I felt like I was falling, skinning my knees and having my heart ripped out every single day. It’s still not easy, I still have moments when the reality of his death practically knocks me down, but God has helped me up from day one. Steve says that our parachute does not open right away. It most certainly did not for me until recently and it didn’t for my sister either. I am pretty sure that most olympic athletes skinned their knees many times.

I encourage you to jump. Stay with it until you soar. Believe in yourself because God does and I believe in you too. Do it. Jump!

Mario Kart

The last thing Christian asked me to do with him was play Mario Kart. At the time, neither of us knew that it was our last chance to play together. He beat me every time but it was still fun to play. About a week after he passed away, I bought a WiiU. Christian used a Playstation and Game Cube but wasn’t sure if he would be able to handle the larger controller that came with the Wii. I had an evening by myself and I fired it up. Once I chose my character and started to play, my heart ached. Christian talked about playing on the Wii and how much he knew I would enjoy the graphics for Mario Kart. I felt close to him and my heart ached at the same time because I was not able to share it with him.

Due to the nature of Duchenne Muscular Dystrophy, my sons were never able to ride a bike without training wheels or join the basketball team. Video games became something they could easily do and enjoy. Andrew plays Destiny on his PS4 often and has gained a group of online friends. In Montana, the winters are long and cold, making it difficult for people with disabilities to leave the house. He is able to socialize with his friends while he plays and has become quite passionate about the game. Christian was able to continue playing until the night before we lost him. His hands just stopped working. I will never forgot the look on his face when he told me he couldn’t hold the controller anymore.

Our neighbors, Len & JoAnn, joined in and actually played. Even they had a blast!

I think we all need to play video games every now and then. I played Mario Kart with Andrew last night and sorely lost, but it was fun and relaxing. It is so easy to say no, I would rather not. We never realize how fast our children grow until it’s too late and we are not cool enough to hang out with them. It becomes more real when your children are diagnosed with a life threatening condition. We can all benefit from putting our seemingly endless list of obligations on the back burner to play a game with our kids.

I wanted to play video games with Christian that last day but his needs were great and we didn’t have any help. I really hope Christian smiles down from heaven as I pick up that controller a few times a week and practice so I can kick Andrew’s tail next time!