duchenne muscular dystrophy – Page 2

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!

Long Time No Post

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!

Song of the week

As I was on my way to Starbucks for a mocha latte and some book time, Waves by Blondefire played. I heard this song when it first came out and I enjoyed the chorus and the upbeat melody. Sirius XM Alt Nation started playing it frequently so I started hearing the lyrics:

You hear them when you try to fall asleep

They crash to the shore, they come from the deep

As sure as the sun will rise, the sun will set

You taste the salt the closer you get

Waves
Picking you up

Pushing you down

They’re always around

Waves
Just like dream

Silver and green

We live in between

They can carry you all the way to me
They can pull you out to the deep blue sea

Oh waves, there are waves

Empires will crumble to the sand
All that you love can slip through your hand

But you must face the ocean once again

Follow the tides, wherever you’ve been

Official Music Video
The meaning to this song for me has changed over the years. At first I thought it explained life with it’s ups and down, good days and bad. Go with the flow. Once my oldest son passed away, the meaning became more personal. We rode many waves, huge tidals or everyday waves in dealing with his Muscular Dystrophy. So much felt like a dream and still does at times. I have days when I feel close to him and days when I feel the tidal wave that took him away from me.

Blondefire has positive, clean lyrics with mostly upbeat songs. It’s hard to feel grumpy when I listen to them. I hope you enjoy the music video. Please feel free to comment if you feel a special connection to this awesome tune.

I will keep getting back up!

Drew patiently awaits his name being called to go back to see the lung doctor.

These critters have looked down on us every six months for as long as I can remember.

This wall hanging with the names of other patients is always a comfort to look at.

Drew is getting ready for his spirometry test with a plug over his nose.

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.

A Journey to Share

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.

A Fight to the Finish

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.

Summer Camp 2004_0769 — Christian and Mikey at MDA camp in 2004

Summer Camp 2004_0764 — Christian, 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.

Take the deep end

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.