A few months ago, my therapist talked to me about holding two emotions at the same time. I have used this bit of wisdom many times and really began to apply it as the season changed.
My son, Christian, was born on October 12, 1993. He went to be with the Lord on October 27, 2014. As the leaves began to turn and show their brilliance in the sunlight against the backdrop of a deeper, blue sky, I felt two emotions at once. I felt joy as I witnessed God’s amazing creation and the miracle of changing seasons while feeling an ache in my heart. Memories flashed across the canvas of my mind – our last outing with Christian at Gibson Park with the golden leaves and cooler temperatures. I see his hand dangling over the side of his chair, holding a piece of bread for a goose to nibble on. I remember him not wanting me to leave his side and not understanding why he all of a sudden didn’t want me out of his sight.
On his birthday, I vividly remember the purple, yellow and orange leaves scattered all over the front lawn as I took photos of him by his birthday sign. I remember so much of what he said and did during his last few days on this planet.
In my other hand, I hold the remembrance that Christian is with Jesus. He is whole, his body no longer contracted and muscles no longer wasting away. He can breathe fully, he can run with his friends who also passed away from Duchenne Muscular Dystrophy, and he is experiencing God in a way none of us will be able to until we go home.
How can my heart ache and be so full of joy at the same time? By knowing that God never leaves us and He cares about our grief, difficulties, anxieties and pain. I feel the grief down to my bones but yet I have hope. “Why are you in despair, O my soul? Why have you become restless and disquieted within me? Hope in God and wait expectantly for Him, for I shall yet praise Him.” (Psalm 42:11)
With God’s strength, we can hold two things at once – sorrow and joy, despair and peace, anger and relief, anxiety and hope. We need to give ourselves some grace to feel, slow down and look around at the miracles in our daily lives, miracles that are present even when our heart aches.
Today my oldest son, Christian, would have turned 31. He passed away almost 2 weeks after his 21st birthday. We are going to the cemetery to clean the headstone and set some gifts out for him. I am also going to take a pottery class, which starts tonight, in his memory.
Even though he had physical limitations, Christian enjoyed making homemade greeting cards, drawing, and working with all sorts of media in art class. When he was in high school, his art teacher nominated him for an award in honor of a Zach Culliton who also overcame his disability to create a beautiful painting of a fish. Christian’s name remains listed to this day.
Christian took a lot of time and effort in making the picture which earned him the award. It was a very exciting evening and so many of our friends and family showed up to celebrate. I even met Zach’s mother and she was very kind. Zach passed away not too long before I met her. I hope to see her again.
Christian was always focused on his abilities instead of his limitations. He made numerous Star Wars lego models, enjoyed doing puzzles, and put his best effort into everything he did. On one particular project when he was in high school, he had to draw a creature made from three different real animals or insects. He then did a ceramic rendering of it. I have it sitting on the table today to remind me of his beautiful art and to give me strength to step outside of my comfort zone for 6 weeks on Saturdays for a couple of hours. I really hope I enjoy it and that pottery will be one of my gifts.
Like many of the hand made greeting cards Christian made for me over the years, I want to make some beautiful pottery for him. I want to picture him smiling down from Heaven. My heart is heavy and I would rather have Christian here to bake his favorite chocolate cake and order him pizza for dinner. I imagine he is doing something far better than anything this earth could ever provide. Happy Birthday my dear son. I know you are having the best time building unlimited lego models and making beautiful pottery because in Heaven, you are not sick. I love you and miss you with all of my heart and soul.
This was drawn by my dad shortly after Christian passed away.
As parents, we all know the value of taking care of ourselves. As a parent of a special needs child it is even more important. The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves. I have learned a hard lesson with this over the last year.
For over 10 years, I was blessed with great health and strength as I cared for my two sons. Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years. As their needs increased, my free time became more sparse so I had to make an effort to make the time count. I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee. I learned to cherish the small things and I still do.
I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son. It was a very painful, humbling feeling and I am thankful my husband did most of his care. I have learned a lot going through this experience. I learned that it is far easier and not as expensive to prevent illness than to have to heal from it. Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome. I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.
For many years, I got up well before I needed to get the boys started for the day. Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day. It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already. This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising. Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book. If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds. It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.
This is the last photo taken of Christian and me together.
After losing Christian, I lost my way. All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself. I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his. Christian read books up until the last 2 weeks of his life. He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone. We all have gifts given to us from God and if we do not invest in them, we are throwing them away. The world ends up not being as wonderful as it could be with our gifts.
Christian won an award in high school for his excellent work overcoming his disability to create art.
Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives. We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.
Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.
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.
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.
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.
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
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.
Summer Camp at Seeley Lake
Making friends at camp
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.
Drew preparing for a breathing test
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.
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.
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.
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.
After work today, I met my husband and son for dinner at our favorite Mexican restaurant. I think we all have one of those. Our favorite restaurant serves authentic cuisine and warm corn chips. Afterward, they were off to play poker and I reluctantly headed home. Alone isn’t a bad thing, but coming home to a quiet, empty house is a painful reminder of the loss. Over Christian’s life, the most time he ever spent away from me was during MDA summer camp which lasted for a week. When you care for a child with special needs, you develop a deeper connection, especially when you physically care for them 24/7. When Christian passed away I felt like I was thrown into an alternate universe. After 16 months I have become used to the new normal, but I still have moments when the realization that Christian isn’t with us makes my world turn on it’s side for a bit. Over time the dizzying effect doesn’t last as long but it will never be easy, just bearable.
Almost every time I have found myself alone in the house missing my boy, I turn on the music. Christian had so much passion for music. He enjoyed 90’s rap like NAS, current rap like Wiz Khalifa and Kid Cudi, and classics such as the Rolling Stones and Paul McCartney. He talked me into buying several vinyls during the last year of his life. He encouraged me to buy the vinyl even though I had the CD because the quality would be worth it. Christian even talked me into buying music that he knew I enjoyed but he didn’t much care for either way. He grew to enjoy a lot of my favorite alternative bands like Interpol and Bare Hands.
One of my prettier vinyls by Blondefire
They say that it changes a person when someone you love dies. That is an understatement. I felt hollowed out for the longest time and had to rediscover who I was. I was a caregiver for both boys for over 10 years. It took me weeks, even months, to stop setting out two sets of pills at mealtime. Not all of the changes have been negative. I would never have believed it if someone told me I would gain anything from losing someone who was as much a part of me as Christian was.
I took this photo at Crystal Lake last summer.
When I see a beautiful sunset, I see so much more than what I used to see. I see something amazing and holy. I feel a stirring inside of me that I have never felt. I see and feel God when I see the rays shining through the clouds, the chickadee in the pine tree, the beautiful pattern on the carpet at work from the sun shining through the window or when I see the stars in the sky. I feel a joy inside that I can’t explain when I look at things that to another person, may seem like nothing. It makes me feel guilty at times. How can I have moments of joy after losing my son and watching Andrew deal with the same complications as Christian did?
When we lean on the Lord, the amazing happens. The journey of grief is far from easy but we do not have to endure it alone. God heals us. God loves us.
As I listened to a song by Deathcab for Cutie, which Christian also enjoyed, I heard guitar melodies I didn’t hear before. Music touches me at a deeper level, bringing me to tears or making me want to get up and dance (listen to Stolen Dance by Milky Chance and you’ll know what I mean). Just knowing Christian and caring for him has given me a deep appreciation for life. I want to reach out and help those who have lost a loved one and I pray and I cry for them. I will not waste my pain. Instead I will find a way to help in a way that I know Christian would be proud of. I hope my posts offer a bit of hope and remind you that you are never alone.
The road less traveled 