Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy. I have been connecting with his mother, Apryl, on Facebook for the last few months. Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am. Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother. A kind woman, who is also named April, mailed me a drawing of Christian. Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing. I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook. Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.
So many lives lost. Ever since the boys were young we would hear about their fellow campers passing away. Some as young as 15, some in their early 30’s. Either way, it’s just not fair. It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away. Friends they laughed with and could be completely themselves with. I see their faces but I cannot remember all of their names. I recognize them when I look through the MDA camp photos from years past.
Christian and Mikey at MDA camp in 2004Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004
Since Christian passed away, I have felt this inner pull to do something. I read something a few nights ago that said not to waste my pain. I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle. My husband thinks I need to write a book. As frightening as that sounds, perhaps the best place to start is right here, on this blog.
All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster. There is so much research going on that it makes my head spin. Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.
Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.
I would like to start today’s post by sharing a bible verse with you. “Lord, help me to realize how brief my time on earth will be. Help me to know that I am here for but a moment more. We are like grass that is green in the morning but mowed down and withered before the evening shadows fall. Teach us to number our days and recognize how few they are; help us to spend them as we should.” (Psalms 39:4; 90:5, 12 TLB)
When we lose someone we love, we are never the same. Not too long after losing Christian, I would look out the window every morning and watch the sky change colors as the sun came up. I still do. At sunset, although my heart aches as daylight fades, I do the same thing. I stand in my kitchen in the last light of the day and close my eyes, appreciating the warmth. I am going to share with you something that Christian said to me the night before he passed away. It felt like a knife going into my heart hearing it, but his words have changed me. He said “Mom, I wish my pain would stop long enough so I could really look at and appreciate things.” He said this as I was covering up his finch, Kiwi, for the night. I think he wanted to look at him just a little bit longer.
During the years before Christian passed away, due to burnout mostly, I went through many days like a robot. I would notice things but not REALLY notice. I would see with my eyes but not with my heart. Now, it’s like seeing everything through a new set of eyes. I see the blueness of the sky and the red tints in the clouds and my heart stirs. I hear a line in a song or a certain tune and I feel an inner stirring in my soul that I forgot was even there.
I read somewhere that we can take beauty for ashes. We can take the soil, which is fertile with grief and watered with tears, and plant seeds which will slowly begin to grow into a beautiful flower. This flower represents the beginning of spending life in a way that honors our loved one. This may mean different things to different people such as appreciating the preciousness of each day, each moment or serving others. This can also mean finding out who we are again and taking steps to rediscover our talents. This may mean taking up a musical instrument we may have given up on years ago, picking up a drawing pencil again or going back to the gym. For myself, I have drawn a couple of pictures and started working with my photos. I have also cherished my reading time even more. Christian and I shared a passion for books and I will keep on reading for him.
All I know is that life is too precious, too brief, to spend it being grouchy every Monday or to let our loved one go out the door without telling them we love them. I look back on my life and see far too many moments that were taken for granted and I intend on living my life to its fullest, for Christian and for everyone I love.
Yesterday I decided to go on a walk for the first time in almost 2 years. I used to walk often before my sons started needing more help with their care. I read in several places that exercise is helpful when we are grieving. I ignored the urge to go walk a few times since Christian passed away but I wasn’t able to ignore it this time. I completed the book series we read together, the Mortal Instruments and Infernal Devices by Cassandra Clare (blog post on that coming later), so I no longer had an excuse. I settled on Gibson Park. At first I didn’t want to because that is the last place I went with Christian during his last week with us.
I couldn’t figure out why Christian kept asking me to stay by his side, but it all makes sense now. As weak as his arms were he was still able to feed one of the geese.
At first, I looked around the park and everything looked exactly how I felt, hollow and sad. The Chinook winds have been blowing for a few days so most of the snow has melted, revealing the trampled, soggy grass underneath. My heart began to lift when I noticed some mallard ducks right along the walking path. The geese were gathered around people who were feeding them. As I rounded the second bend on my lap around the park I heard chickadees – “chick a dee dee dee dee”. If you have ever heard them then you know exactly how cheery they sound and how uplifting it is to hear their call. I started snapping shots on my iPhone. Someone did a wonderful job carving this turtle out of a tree trunk. I also noticed the lamps
that had been put up since I had last walked at Gibson Park. I started to see beauty among the ashes of the winter storms we experienced over the last couple of months.
A little ways further and a friendly squirrel ran up to me and started scampering around me in circles. He looked at me like he was expecting a peanut. I looked around and noticed the little fellas were running and playing all over the park.
As my walk came to a close and my car came into view, I started feeling lighter. I knew that to do the things that bring me joy and peace are the things that honor Christian. I plan on continuing my walks and I hope to encounter more critters that I can take photos of and share with you all!
I haven’t posted in a few weeks. Christian’s passing was just before the holiday season began and it was a lot to process. I was happy to have my mother and sister here for Thanksgiving and it did help things to not be as overwhelmingly painful. We shed more tears around Christmas but did find great comfort looking at the lights on the tree. It was a different kind of Christmas all right. It did help to go the the cemetery. A friend of ours beat us to it and left a couple of gifts for Christian.
And my mother had a company in her town make a Darth Vader decoration for the grave. Christian was very passionate about Star Wars and had a lot of empathy for Darth Vader (a post on that later).
Thanks to the comfort and strength of the Lord and the love and generosity of family and friends, we made it through our first holiday without our oldest son.
Around New Years, I picked up the paper and saw a headline called Montana heroes lost in 2014. The article link is http://www.greatfallstribune.com/story/news/local/2014/12/30/montana-heroes-lost/21076535/ . I decided to read through the article and thought in my mind that Christian was our hero in so many ways. I was in disbelief when I saw Christian listed in the article! I was touched, I cried, posted it on social media and let my family know.
My husband did the best job ever in writing the obituary. Christian cared for others, he loved others, he was kind, courageous and intelligent. He also had a great sense of humor and had the best laugh. His smile. I could write about his smile alone. It’s impossible not to smile when you see the light radiating from his face.
There are so many people that changed the lives of those they were close to just by being themselves. Christian was one of them. He wasn’t able to fly a plane or publish a novel but he did many smaller things that meant just as much. He made us laugh, he received an art award in 2010, he helped out his grandparents with groceries and he always bought us the best gifts. He made an impact on so many people with his love, grace and humor. If there was any way he could help, he would do so to the fullest of his physical ability. Christian inspired everyone he came into contact with, even if it was just once a few years ago. I miss him and hurt in a way I cannot put into words, but I feel tremendously grateful to have had him in my life. He left me many of his traits and as I heal, I will honor him by continuing his love, kindness, humor, courage and grace.
Last August, my younger sister, Sherry, called me in a flurry of excitement. Interpol was going to be playing in Denver September 27 at the Ogden Theatre! I could hardly believe it and I also didn’t see how I could possibly pull this off. With the boys’ needs I was lucky to go to the grocery store or run errands. I had to fly. This was a sticking point with me because I am not fond of flying and it would be for only one night. I decided that I was not going. My oldest son, Christian, kept encouraging me but I wouldn’t budge, especially since I would have to take Dramamine. If you have taken it you are probably familiar with the drowsiness that accompanies the relief. I kept going back and forth until Christian told me that if it was his favorite band he would go. It breaks my heart that he never went to a concert. We live in an area of the nation that does not get much action where music is concerned. He enjoyed listening to Wiz Khalifa, Nas and his favorite musician was Kid Cudi. After he said that I booked the tickets.
I was nervous and excited as I waited to board the plane. I even had the song picked out that I would listen to as we took off – “Anywhere” off of the El Pintor album. We landed safely less than 3 hours later and my sister and brother-in-law picked me up. Before I knew it, we were in line. They had a promotion for people who owned a Samsung phone and luckily, my sister had one. We were able to go to the front of the line! It was awesome!
You see that Interpol poster behind us? My sister, the ultimate haggler, talked one of the employees into letting us have two of them! It was all meant to be!
The opening act, Rey Pila, was awesome. They are out of New Mexico and they rocked. The bass in the Ogden is so strong that it literally jars your insides. I was so pumped to see my favorite band! When Sam Fogarino, Daniel Kessler and Paul Banks took to the stage I was beside myself! They sounded exactly how I imagined – AWESOME! They played a lot of their new music along with my favorites off of their older albums. Paul Banks sounded incredible, Sam had so much energy on the drums and Daniel Kessler rocked the house on his guitar!
My sister and I had the best time at the concert and we also visited the record store next door. We had a ball. She found a vintage Pink Panther record and I found some flawless Dean Martin records among others.
The flight home was wonderful. I listened to my El Pintor album and looked out the window the whole way. The view was outstanding.
I would have never gone to the concert if it wasn’t for my son. He lost so much over his last years of life as he dealt with more pain. I knew that I needed to overcome my fear of flying and just do it. I had no idea, however, that Christian would pass away exactly a month later on October 27. Now, whenever I have memories of the concert, I will remember that I did it for him.
The night before Christian passed, he asked me about one of my albums by Paul Banks, Skyscraper. It was the last music Christian ever talked about with me and he loved so much different music. When we had to plan his funeral, I included the Madrid Song and On the Esplanade off of the Skyscraper album. Both songs are beautiful and I understand why Christian mentioned the album. I made a slideshow and used these two songs and it was absolutely beautiful.
Music is such a large part of our daily lives and it was everything to Christian. We had to stay home a lot and it helped to brighten many days. I am thankful to have come across such a wonderful band. Thank you Paul, Daniel and Sam for expressing yourselves in your music and enriching our lives.
It has been well over a year since my last post. So much has changed, especially of late. On October 27, in the early hours of the morning, my oldest son, Christian, went to heaven. My heart broke into a million pieces that day.
These past weeks have been a blur. I have felt more pain and emotion than I ever thought possible, sometimes in the span of 5 minutes. I have also felt parts of my soul stir that I didn’t even know existed. For the first few days, I couldn’t even think straight enough to pray or read scripture. Thankfully I have been able to focus more and I have made sure to keep God’s Word close by. I have relied on God more heavily than I have ever before and prayed more than ever.
They say that when we lose someone we love, we are never the same. We have to adjust to a new normal. I can honestly say I am not the same. I am broken, tired, confused, angry and lost. On the other hand, I have felt love grow in my heart – love for Christian, God, my husband and my younger son, Andrew. You see, Christian was more than a son. He was my best friend (wow, I just cried for the first time in public). He was also my rock, my inspiration. He left me everything that was good about him – good and perfect. He left me his courage, love, more love, his beautiful smile, his humor and his love of music. I can hardly listen to a song without thinking of him.
The past year has been difficult but I am thankful for all of it – the constant caregiving, sore legs and feet from standing all day, the fear, aggravation. It all made me a better person and taught me to enjoy the little, often overlooked things in life – a sparrow on the feeder, the full moon, a funny shaped cloud in the sky or sunlight on the wall. Christian made me realize that I do not need material possessions to be happy and satisfied. In Christian’s last year of his life, he only spent less than $100 on himself. He enjoyed buying gifts for others and watching their expressions when they opened them. Christian was in a lot of pain the last year and a half of his life and wasn’t able to go out of the house much. As a result, he read books on his iPhone, played video games (Metroid and racing games were his favorites), listened to some good music and watched movies. Tom Cruise was his favorite actor and he watched Live, Die, Repeat the weekend before he passed. His love of NASCAR inspired me to love it too. I so wanted his favorite driver, Jeff Gordon, to win the Chase but instead I bawled as he duked it out with my driver, Brad Keslowski. What a mess.
I know that eventually, I will cross the stormy sea of grief and I will surely lean into the storm so I can keep moving ahead. God will be with me every step of the way. As I heal, I will be inspired by Christian. He will always be with me until I see him again. He is inspiring me to keep listening to music, especially vinyl, start drawing and painting and play the piano again. He inspires me to continue taking care of myself and my husband and son. He inspires me to help others and bless others, just as he did every single day of his life. Not a person came away from Christian without being moved my his love, grace and smile. I will love him for all time. I will be posting on my blog more and I hope I will inspire you and move you. I love you and thank you for reading and I hope a part of Christian will also be with you.
Today I started writing in a brand new journal. Even though I had a few pages left on my previous journal, I just had to start fresh in my new one. I am certain that I am not the only one who is trying to figure out what my new year’s resolutions will be. I want to call them goals instead. When I think of resolutions, I think of someone wanting to lose weight, quit smoking or give up drinking coffee (over my dead body – hah!).
I read an entry in my devotional, Faith in the Valley by Iyanla Vanzant, and it resonated with me. She said that our skin cells, our hair and other parts of our body are not the same parts that we had a week ago, a month ago or a year ago. Without our intervention, our physical bodies are ever-changing, not always the way we want them to either. (I find more and more gray hairs every week.) Iyanla said that one thing that does not change on it’s own is our mind. Do we have the same attitude and do we have the same thoughts that we had years ago and have they held us back from the life we truly deserve to live? In my case the answer is yes. What if we decide to be more of who we are, take better care of ourselves, love ourselves and others, and express more kindness and gratitude instead? Once we do these things, wouldn’t that make it easier to lose weight or eat healthier? Maybe it’s better to start within.
Today the sun was shining and I felt blessed to have a day with my family. What are my hopes for 2014? For my oldest son to be in less pain from his MD, that perhaps we will find good help with my sons and that we would love each other just a little more every day. I hope to post more in my blog, read more books, do more crossword puzzles and listen to more great music on my new turntable. I wish you all the very best life can offer in 2014!
On October 21, I was blessed to see my favorite band, Two Door Cinema Club, in concert with my sister in Denver! My husband surprised me with tickets last June. Being a full time caregiver, my going out consists of books and coffee at my favorite coffee house, errands or some occasional shopping. It had been years since I was able to get away by myself – for 4 nights! I rented a car, a Nissan Sentra, plugged in my Two Door Cinema Club playlist and away I went! It took me a couple of hours to relax and get used to not seeing anyone in the back seat. I rarely go anywhere in a vehicle by myself so this was a new thing for me! It was about the time I reached the wind farm by Judith Gap that it started to sink in that I was on a trip by myself! Yes!
Everything went smoothly until I missed the turnoff for Billings by Lavina. I ended up close to Roundup so I was about 45 minutes out of the way. I eventually made it to Billings, passed the ramp for I-90 only once and it was interstate all the way to my sister’s house. I didn’t leave home until 2:00 so it was getting dark by the time I saw Billings in my rearview. I continued to enjoy my tunes and had to turn them up louder once I reached I-25. This portion of I-25 is straight and I was beginning to feel drowsy. After almost hitting a huge porcupine and seeing only 4 deer along the entire drive, I made it to Douglas.
My sister, Sherry, and I had Sunday to relax before our big day in Denver. She is a volunteer firefighter so she showed me around the station. This gave me a visual of what she deals with and I really admire her and her husband, Pat, for what they do. I had the privilege of meeting Sherry’s good friend, J.J., and her two wonderful sons. I visited with my niece and nephew and briefly saw my brother-in-law between his workdays. I went to bed that night very relaxed and thankful for family and new friends.
My niece and nephew, Alex & JarynJ.J. and her oldest son, Sill
We left for Denver early and arrived in Fort Collins in time for lunch. We ate at Mad Greens which was delicious. It was located close to the university and the trees were golden with the light of autumn. Once we got back onto the interstate, traffic started to become heavier and more lanes were appearing. I am a Montana girl not used to city driving, so I had to keep telling myself to chill out. We used Siri on my iPhone as we started to approach Denver. My stomach started doing flip flops when downtown Denver came into view. Next thing I knew, I could see Coors Field and we were approaching Colfax Avenue, which is where our hotel and the Ogden Theatre is located. It went smoothly except for the old woman who drove her wheelchair into the middle of the intersection I was approaching and the red light I had to run because I didn’t even know it was there! By the time we reached our hotel, I was nauseated, relieved and excited. I kept telling myself, this is it! I am actually going to see my favorite band tonight!
We had plenty of time to walk down to a record store right next to the Ogden Theatre and grab a bite to eat at an Irish eatery. We went back to the hotel and I could hardly sit still for all of the excitement. We left early and there was already a line. Most of the people in line had big X’s on their hands for under 21 and my sister and I were one of the few with over 21 bracelets on.
Me and Sherry
At one point while we were standing in line, we saw two guys run by that looked like they were straight out of the 70’s. We laughed a little and continued waiting for the doors to open. We were fairly close to the front of the line so we were able to stand in the front section. We eagerly waited for things to start and I was surprised at how close we were to the stage. I could hear a lot of excitement building for one of the opening acts, St. Lucia, who I had never heard before.
Peace
It was 8:00 and the opening act came out! I looked at the lead singer and lead guitarist and my jaw dropped! They were the two guys who ran by us earlier. Come to find out, they were straight out of England – Peace was the name of their band. They were very good. We laughed at ourselves for not knowing who they were. As St. Lucia’s turn was approaching, I could feel the energy in the crowd building. Sherry and I had to hold our stance and keep our place in the front section. The Ogden is smaller so it wasn’t as bad as it could have been. Only one guy tried to cut in front of us and Sherry pretty much told him where to go. Not many will press their luck with her – she is tough as nails.
St. Lucia
I am surprised to this day how much I remember about St. Lucia – their enthusiasm, energy, the music and more. As I listen to Elevate at this moment, I feel like I am there. Everyone of them looked so happy and full of life. It was impossible to stand still as I watched the beautiful woman in front of me play the keyboards, shake the tambourine and jam out. Once they were finished, the drummer threw out his drumsticks. Some girls next to us were fighting over one and Sherry took her chance. They all knew better than to try grabbing it back! I am happy to say that it is safely sitting on my piano as I write this.
Alex Trimble of Two Door Cinema Club
The set up for Two Door Cinema Club took the longest. I could hardly contain myself. The girls in front of us left to meet St. Lucia and next thing I knew, Sherry pushed me up into the spot they were in. I was right up front!!! The lights went out, fog began to rise and I could see them entering the stage. My eyes started to water! Next thing I knew, Alex Trimble was up there and the bassist, Kevin Baird, was right in front of us! I could feel the music in every cell of my body and as I listened to the songs that were so familiar to me, I was amazed to see it all unfolding in front of me. The music was flawless and I couldn’t stand still. Sherry had to take most of the pictures because I couldn’t stop dancing!
Sam Halliday played on the opposite side of the stage. He looked like he was having a blast!
Once it was over, Sherry and I could feel our age. We were sore and tired. That night I awoke around 3:00 and I still had adrenaline. It took me over an hour to go back to sleep.
We enjoyed the rest of our time in Denver at a cute consignment shop on Colfax and a small coffee house across the street. The drive back to Wyoming was relaxing and the weather was beautiful.
The morning I left was so hard, as I knew it would be. I cried in private as I packed and didn’t waste too much time leaving since I had a 9 hour drive ahead of me. I kept myself together until I hugged my niece and nephew again. I bawled as I said goodbye and Alex, my niece, said they were tears of joy. I look back on it today and realize that she was right. They were tears of joy for an experience I will remember for the rest of my life – the concert, the time with my sister and meeting new friends. I took several pictures and will keep them close, saving them until I need them most. I may not be able to do something like this again for some time. My sons’ disease is progressive and I find them needing more and more help. My husband is the greatest guy on the planet for taking such good care of them while I was away. I may have been annoying for a while after I returned, showing off my photos and talking about the concert, but it’s only because I have given so much up since I left my career in 2005. This more than made up for it and I will always be thankful!
Remember when you first learned how to swim? Most of us walked into the shallow end and gradually made our way into deeper waters. This works just fine when we are learning how to swim but I have found in life that taking the deeper end is better. One of my favorite bands, Two Door Cinema Club, has a song called Beacon. A line from that song resonated with me and it has stuck ever since I first heard it:
Take the deep end, swim till you can’t stand
cuz it will make a difference in the end.
After finding out that my two sons have Duchenne Muscular Dystrophy, I made a decision to help them grow up as normal as possible. I kept them in school until 10th and 11th grade and they went to regular class. Unfortunately, I had to withdraw them from school for health reasons and help them earn their G.E.D.s. They participated in field trips, had friends over to play, went swimming and even rode horses. They did homework, played clarinets in band and were like any other teenager despite their physical limitations. It may have been easier to throw my hands into the air and put them into special education, but I knew that would not be the best in the long run.
I still run into situations almost everyday when I have to remind myself to take the deep end. There are many evenings when I do not feel like cooking but I know that giving them convenient junk will only accelerate their disease. I was not the “cool” mom who let her kids drink soda and eat tons of sugar. I knew early on that it would only make their futures worse. Yesterday morning, I did not want to clean my house. I did it anyway because doing just one thing can make the world a better place – whether it’s something big like helping a disabled child through school or something small like picking an object off of the floor for someone. I was floored when my youngest son, Andrew, told me that he would drop a pencil onto the floor only for another kid to just look at it and walk away. We need to teach each other to help and to care. We need to take the deep end because it will make a difference in the end.
Fall is my favorite time of the year. My oldest son loves summer because he hurts less when he is warm. My husband loves warmer weather so he can take his sports car or motorcycle out. When I was young I enjoyed summer because I didn’t have to go to school, I could go swimming and stay up late.
As I became older, I started to notice things about autumn that I enjoyed. I noticed how the sun would shine into the room at a slant and how the sky seemed bluer. When the sun rises, the leaves look like gold as they flutter in the morning breeze. The sound of leaves rolling down the sidewalk or rustling in the trees gives me a sense of peace. I know they will soon fall and the trees will once again be naked, so I enjoy them while they hang on.
I started to compose a poem in my head while I was helping my son earlier:
Leaves blowing in the autumn breeze
as the curtains gently dance.
Sunshine in my kitchen
gives life to figurines on the sill.
The peace mimics a trance
and my soul feels at ease.
Soon, the typical Montana winter will arrive. Until then, I will keep the windows open when I can and enjoy the beautiful colors. The leaves turn beautiful to reassure us that they will be back in the spring. The starlings gather and dance in the sky to entertain us before they return next year. I have even heard some house finches squeezing in a little more singing and a sparrow courting a female one last time. I will keep feeding them all winter as I look forward to new life in the spring.
