I must admit I was a bit shocked when I saw how long it had been since my last blog post. I have read in more that one place that we have to make time to do the things that matter or we will never do them. We also must not wait until everything is perfect before we pursue our dreams. Our lives are ever-changing but our dreams remain in our hearts. I have a dream of writing a book about my sons and their daily battle with Duchenne Muscular Dystrophy. A book that I hope will inspire people to donate to the MDA and reach out to families afflicted with devastating, neuromuscular diseases.
So much has changed since my last post. After over 10 years of being a full-time caregiver for my sons, I am back at work. Not just any place of employment but the very company that I left to care for my sons. I feel tremendously blessed to be rehired. Even with blessings, it’s easy to still experience moments of fear and doubt. Questions circled in my mind such as wondering if I would remember everything. There is also the social aspect of working outside of the home that I have been missing for far too long. It has been fun seeing people who I haven’t seen in years, literally. It has been difficult not seeing my son as much but this change enables us to be a healthier and happier family.
October 27th marked the one year anniversary since Christian passed away. I honestly thought it would be beneficial for me to go to work and with this year being the first one, I didn’t know what to expect. Let’s just say I had to go home. Being with my family made the day easier to bear for all of us. This fall has been painful. As I have been watching the leaves turn and fall off of the trees and the sun shine at a different angle, I have been flashing back to our last few weeks with Christian. The good Lord has given me the comfort and strength I need to keep putting one foot in front of the other. One sign of the healing that has taken place over the last year is the little moments of joy that fill my heart at the most simple of things. A squirrel greeted me on one of my courthouse runs with a mouthful of leaves. A house finch called to me from under a car in the parking lot behind the treasurer’s office. A pigeon greeted me above the door before I went inside. The simplest of sights are the most beautiful.
I had to remind myself lately that going back to work full-time does not mean I have to stop pursuing my dreams. We can always carve out a little time every day to write, play a song on the piano or take a 30 minute walk. I would love to hear about your dreams and I will keep you posted on mine. I have a piano that I would love to start playing again but with most things, I will need to take baby steps. I read a blog post by Tsh Oxenreider (theartofsimple.net) about not setting goals too big or it sets us up to fail. It’s far easier to exceed a goal that’s simpler and realistic. Wise words!
I woke up to something I hadn’t seen in what seems like weeks – a sunrise! For the last while, a good portion of Montana has been covered with a blanket of hazardous air from forest fires. The sky was a funny grey color and it smelled like a campfire outside. When the sun shined into the house it was an alien, orange shade. Thankfully cooler weather blew in last night and the air is no longer at a hazardous level. I have found myself pausing throughout the day to watch the white pillows in the sky float by, wondering which one my Christian is on.
I noticed some trees around town were already turning yellow. It is the end of August but it still seems too soon. One of my favorite sounds on days like today is the rustling of leaves as the wind blows and the sound of Eurasian doves cooing in the evening light.
Fall is my favorite season and already I am looking forward to the changing leaves and cooler winds. This will be a difficult season to pass through because October 27th will be the one year anniversary of Christian’s passing. October 12 would have been his 22nd birthday. The good Lord has helped us through the most difficult first year and I know the pain will never fully go away. I will miss Christian and long to see him for the rest of my time on this earth.
On the evening before Christian passed away, he said that he wished his pain would stop so he could just sit still, look at things and really enjoy them. Now, in heaven, he can see things far more beautiful. When I hear the leaves blowing down the sidewalk this fall and see the beautiful, autumn hued, blue sky, I will enjoy it all the more because of Christian’s grace.
Drew had his 6 month check up this morning with his heart and lung doctors. We had to get an early start on things and jet across town by 8:30. The sun was shining and we were in good spirits. We expected to hear good news based on Drew’s energy level and overall well being.
Drew had his heart echo first. The boys have been seeing Dr. Ruggerie since they were small, shortly after their diagnosis of Duchenne Muscular Dystrophy. He treated Christian up until he passed last October. Unfortunately, after less than a year after losing Christian, we found out today that Drew’s heart and lung function numbers have decreased. We know how this disease progresses and have had this told to us in the past about Christian, but it still doesn’t prepare us or make it any easier. The heart is a muscle and muscles in our chest help us to breathe. Duchenne’s affects all of the muscles in the body. It doesn’t pick and choose, doesn’t affect only the face, legs or hands. At times, I think this disease is a monster.
Oh, sure, I could curl up in a ball and give up. Yell. Get mad. I would rather get back up, dust myself off, and keep fighting for Christian, who I know would want me to keep fighting, for Drew, my husband, my mother and for all of the boys and families dealing with this devastating disease.
The more I see this disease affecting my son and my mother, and especially after losing Christian last October, the more I want to do something to help, educate people and keep fighting for a cure. Okay. Here it is. I want to write a book. This scares the crap out of me but I know it needs to be done, especially after I found out the telethon has been discontinued. I don’t have a writing degree or any kind of education that pertains to writing a book but I have lived it. I have seen my boys learn to walk but eventually lose that ability. I have seen them fall, I have heard the awful things other kids have said to them. I have seen them go through the surgeries, humiliation, raw fear, pain and suffering. I don’t know how to begin but writing in this blog and sharing my heart with all of you is the first step. Thank you so much for reading my blog and walking with me on this journey. This book needs to be written.
On July 23rd I was blessed to have my opinion piece published in the Great Falls Tribune. Source Fill the boot for MDA was taking place and I wanted to help in any way I could. Many people may not realize that the national telethon has been discontinued. When I first heard this I was devastated. Source One of the first things I asked myself was how are we going to find a cure and help these kids keep going to clinics and summer camp? More people are donating funds via social media (think Ice Bucket Challenge) and perhaps this avenue will be less expensive than airing it on television. All I knew was I wanted to get something out there to encourage people to donate. Click on the above link to read my article in the Great Falls Tribune. We need to spread the word about the MDA – what they stand for, who they help, why these kiddos need help and how people can continue to support them.
Over the years, as funds have dwindled and costs have increased, finding camp counselors has also become a challenge. It is not unheard of for counselors to arrive at the MDA camp from other states. Christian made friends with a young man from Chicago one year. He also made a friend for life, Ryan Clinch, who was his counselor for several years and was also a counselor for Drew a couple of times.
I hope you enjoy my article and if you see a MDA Fill the Boot event near you, please spread the word and help out if you can. Our boys look forward to attending camp every summer and the generous donations of so many loving, caring people make it possible!
I have asked myself several times over the last couple of months why I have not been posting to my blog. The excuses have been varied: I don’t have time. I don’t want to bring anybody down. No one wants to hear about my grief. There is nothing exciting going on in my life.
I read in one of my grief books that we should not waste our pain. Our pain, the difficulties we face and how we overcome them inspire others and give them hope.
Christian always wanted to help but wasn’t able to. He said he would help with the dishes, mow the lawn, and do the things that most kids throw a fit over having to do if he was physically capable. He was helpful even at a young age and in many photos I have taken of him, he has his arm around his younger brother, Andrew. Christian wasn’t able to join the football team or do chores around the house, but he was able to love and inspire. He taught people that just because he was in a wheelchair didn’t mean that he couldn’t go to school and work just as hard, sometimes harder, than the rest of the kids. Everyone who met Christian became inspired by his kindness, eagerness to help and learn, and his spirit. Somehow, either by posting in my blog, drawing or painting (Christian was passionate about art), helping other parents overcome the daily challenges of living with Duchenne MD or one day writing a book about our experiences with DMD, I will use my pain for something good.
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.
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.