So tonight, I am hearing the best music I have ever heard in my life. It is simple, it is random, it is hysterical, and it is the sweetest sounds…. The boys are on the Wi downstairs (usually it is xbox) and the music is them playing together, laughing, bantering, cheering. Lately for some reason I have forgotten that this is in fact music. Music that many don’t get to hear, music that many tune out… all the same ..... music. And tonight, I found that piece inside me that shook me a little and said… “Come on listen…. You will love it.”
I think the deafness must have had something to do also with my bout of writers block, in that I just haven’t had it in me to write to you all. But the music, it just inspires me…. So here comes the joy, craziness and life in general that has been happening since July in this Duchenne household.
I think the deafness must have had something to do also with my bout of writers block, in that I just haven’t had it in me to write to you all. But the music, it just inspires me…. So here comes the joy, craziness and life in general that has been happening since July in this Duchenne household.
Dreams...
They say that your dreams are the pathway to your soul…I know that my brave momma just had some funky dreams when she went under the knife for a quick ankle repair, but the vividness and fear the dreams placed in her (perhaps pain killer induced) just struck me and took me quickly back to Owen, a few morning’s ago when he shared a rare remembrance of his dream.
He was chasing a deer.
I asked him if he was running in his dream.
He said yes.
So innocent, so profound,
“Yes, mom, I always run and walk in my dreams.”
What a strange reality for him, I guess for anyone that has certain things robbed from them, to feel the warmth and joy of a dream and wake up realizing that physically it is impossible. It makes my heart crave to make the impossible possible for him.
They say that your dreams are the pathway to your soul…I know that my brave momma just had some funky dreams when she went under the knife for a quick ankle repair, but the vividness and fear the dreams placed in her (perhaps pain killer induced) just struck me and took me quickly back to Owen, a few morning’s ago when he shared a rare remembrance of his dream.
He was chasing a deer.
I asked him if he was running in his dream.
He said yes.
So innocent, so profound,
“Yes, mom, I always run and walk in my dreams.”
What a strange reality for him, I guess for anyone that has certain things robbed from them, to feel the warmth and joy of a dream and wake up realizing that physically it is impossible. It makes my heart crave to make the impossible possible for him.
Not saying that the possible is impossible, we certainly are not there yet.
Wade put it so eloquently a few weeks back when we pulled into the family cabin in PA, Friday night, about 9:30 pm… there is nothing like pitch dark, PA night skies. You can see the stars like nowhere else on Earth. But the thing is as you pull in and get settled in, you are surrounded in blackness, though black, it certainly is beautiful. What he said, I think will stay inside my soul for decades to come….
As we got unpacked and settled in the cabin, he said, “We aren’t really here until we can see it in the morning.” Obviously, we clearly were in Pennsylvania, seriously, we were ‘here’. But to him, we weren’t because he could not see the familiar bon fire pit, creek, pond, rolling hills and trees, until he could see it in all of God’s glorious sun rising splendor, we were ‘not here yet.’
Wade put it so eloquently a few weeks back when we pulled into the family cabin in PA, Friday night, about 9:30 pm… there is nothing like pitch dark, PA night skies. You can see the stars like nowhere else on Earth. But the thing is as you pull in and get settled in, you are surrounded in blackness, though black, it certainly is beautiful. What he said, I think will stay inside my soul for decades to come….
As we got unpacked and settled in the cabin, he said, “We aren’t really here until we can see it in the morning.” Obviously, we clearly were in Pennsylvania, seriously, we were ‘here’. But to him, we weren’t because he could not see the familiar bon fire pit, creek, pond, rolling hills and trees, until he could see it in all of God’s glorious sun rising splendor, we were ‘not here yet.’
Mary Ellen Dailey's Hope I guess mixing the dreams of running and the blackness of ‘not there yet’ makes it difficult to buy into the results of our recent visit to Children’s Nationwide Hospital this August, maybe parts of impossible can become real….. in that through the confusion of the rattled visit and the follow up between PPMD, Dr. Mendell and us, the nurse stated “Dr. Mendell will do everything he can to get you into the study.”
Yes, that study. The one we signed and signed and signed urging the FDA to push forward. That Study.
Though the dates of the kickoff are not in stone, in fact they have fluctuated depending on who you talk to. The point being, there is this layer of hope out there that we did not have before. There is the pending sense of sunrise just waiting to burst over God’s goodness to show us, “Yes, you are here.”
But in reality, we are not here yet, so dreams, for now, chasing a deer, running his sweet little heart out… that is mine and I know you will all keep on praying we can make this a reality.
Yes, that study. The one we signed and signed and signed urging the FDA to push forward. That Study.
Though the dates of the kickoff are not in stone, in fact they have fluctuated depending on who you talk to. The point being, there is this layer of hope out there that we did not have before. There is the pending sense of sunrise just waiting to burst over God’s goodness to show us, “Yes, you are here.”
But in reality, we are not here yet, so dreams, for now, chasing a deer, running his sweet little heart out… that is mine and I know you will all keep on praying we can make this a reality.
So….. What can you do to get us closer to the ‘here’?
JOIN US……
Join us, will you? In our last JOA event this year, Iron Horse Bike Ride on 9.28.14. It is such a beautiful way to bring in the Fall with a variety of bike ride distances through our amazing Metro parks.
Please sign up at
Iron Horse Bike Ride
Simple way to spend the day Derailing Duchenne……
JOIN US……
Join us, will you? In our last JOA event this year, Iron Horse Bike Ride on 9.28.14. It is such a beautiful way to bring in the Fall with a variety of bike ride distances through our amazing Metro parks.
Please sign up at
Iron Horse Bike Ride
Simple way to spend the day Derailing Duchenne……
Burrr…….
We have been so overwhelmed by the ALS Ice Bucket Challenge – in fact, thrilled that ALS is taking center stage to this gig in that so very many have taken on the challenge and that ALS has received so many donations. You see, to us, ALS is very similar to Duchenne… and we are so grateful that this amazing awareness to this brutal muscle killer is like wildfire….. so keep the ice cubes coming!!!!!!
Our Ice Cubes
Our Vice Principle, Mrs. Polowyk took on the challenge at the call of our St. Albert the Great 8th Grade Football team, and dumped her head in ice for John Owen and all our boys trying like mad to simply lift a limb to brush, eat, wave or really just live in the face of this muscle killer. Today, the team made John Owen an honorary member of the St. Albert Varsity Football Team and every yard they gain is for him!
We have been so overwhelmed by the ALS Ice Bucket Challenge – in fact, thrilled that ALS is taking center stage to this gig in that so very many have taken on the challenge and that ALS has received so many donations. You see, to us, ALS is very similar to Duchenne… and we are so grateful that this amazing awareness to this brutal muscle killer is like wildfire….. so keep the ice cubes coming!!!!!!
Our Ice Cubes
Our Vice Principle, Mrs. Polowyk took on the challenge at the call of our St. Albert the Great 8th Grade Football team, and dumped her head in ice for John Owen and all our boys trying like mad to simply lift a limb to brush, eat, wave or really just live in the face of this muscle killer. Today, the team made John Owen an honorary member of the St. Albert Varsity Football Team and every yard they gain is for him!
It is just beyond amazing that the “Cold Water Challenge’ for JOA started from an amazing soul in Trevor Knerium, and from that sparked so much awareness!!! Thank you to all that took the challenge and for those that have not been called out yet…. LET’S DO THIS…. Right???????????? NO MATTER WHAT YOUR CAUSE…. Do something to help us special needs families to feel your love and appreciation for our battle….
9.7 World Duchenne Awareness Day
It was an inaugural day for Duchenne in that the 7th of September was declared World Duchenne Awareness Day. In the video below, you see our family (well not really us) but in that every day in the life of Duchenne eventually, one way or another, is exactly the same for all of us Duchenne families….
We had an amazing summer! So many spirits out to help us derail…
On Base for Duchenne ~ Impact Team Sports 11 U Lumberjacks spent every on base for Duchenne this season raising awareness and funds to help us derail. We are already on their queue for next year. What an amazing blessing these boys are!
Moving Spirit ~ Hundreds of miles were run in honor of John Owen and taking down Duchenne in our Rite Aid Cleveland Marathon Moving Spirit Team. Many of us will continue on to the Marine Corp Marathon in DC in October to honor the 3/25 49 Fallen Marines from one unit in 2005. This spirit of this running team is simply amazing. Blessed beyond words by the fellowship and love this group has created and spread.
Picnic in the Park ~ Again a record year with over $30,000 raised in research funds and more importantly an amazing family oriented event bringing nearly 2,000 NEOH people together.
Golf for JOA ~ Tom and Becky Hudach made par on this baby! We had a blast at the first Golf for JOA in August and are in awe of their dedication to help our son through this great event!
100 Miles
Um, yes I said 100 miles. Not Driven, Not Biked, Not mapped out on a GPS…. But run. In a row, no stopping for 28 hours by some crazy, awesome JOA loving guys, Joe Vasil and John Farinelli. The first weekend in August they ran 28 (ok maybe close to 29) hours straight for John Owen and our boys to Defeat Duchenne.
100 Miles
Um, yes I said 100 miles. Not Driven, Not Biked, Not mapped out on a GPS…. But run. In a row, no stopping for 28 hours by some crazy, awesome JOA loving guys, Joe Vasil and John Farinelli. The first weekend in August they ran 28 (ok maybe close to 29) hours straight for John Owen and our boys to Defeat Duchenne.
It is so hard to describe how you feel about someone that takes countless hours in training for 18 months for this one weekend to just never stop….. kind of reminds me of the antithesis of Duchenne in that Duchenne is bad… these guys are good … but the common link… NEITHER STOP.
Wow – Thank you is not enough. As you know, Joe has been a JOA Hero for some time and no officially his running mate has earned the 2014 JOA Hero of the Year!
Nothing in this world beats the support of genuine hearts when you are most in need. Love your neighbor…. Right? Well these two have paved their treasures in heaven for sure!!
Nothing in this world beats the support of genuine hearts when you are most in need. Love your neighbor…. Right? Well these two have paved their treasures in heaven for sure!!
2014 JOA Hero… John Farinelli
"Some thoughts on the BR100
I have to start at the beginning.... "In the beginning ....” Jen invited me to run with the awesome JOA group of runners, and Joe Vasil was my coach, and all was good! How appropriate to train for an entire year with Joe leading the way. Looking back, the training was at times grueling, especially during the cold winter, and those intense back-to-back long summer trail runs. I truly thank my family for taking on so much at home to cover for me while I was gone. The time committed was something I really underestimated. As many of you know, I was not the most confident in my expectations for much of my training. How could I actually run 100 miles in a little over a day, when I had not even run 60 miles in an entire week? Even towards the end, I was plagued by this lack of confidence. The last week before the race put an end to this with an amazing out-pouring of cards, notes, packages, thoughts, and especially prayers. I still remember going to pick up my race bib the day before the race and seeing those words, "for JOA" - that put any doubt I had before to rest. The day of the race, the first 50 miles seemed to fly by. The second 50 were some combination of self-determination, and not wanting to let anyone down who had encouraged me that week before. Somehow, this was the magic formula (along with a great crew and pacers), to carry me the second half.
Looking back about 3 weeks later, I learned how important support from others was to meeting this goal, and that I need to carry this forward in whatever ways I can. Secondly, I'm constantly reminded of the words of Fr. John Viall when he said, "always remember to pray", anything is possible with God. Third, I will always be in debt to my family for giving me the time to train for this, and now it's time for me to support them as unselfishly as they supported me."
John Farinelli 8/27/14
"Some thoughts on the BR100
I have to start at the beginning.... "In the beginning ....” Jen invited me to run with the awesome JOA group of runners, and Joe Vasil was my coach, and all was good! How appropriate to train for an entire year with Joe leading the way. Looking back, the training was at times grueling, especially during the cold winter, and those intense back-to-back long summer trail runs. I truly thank my family for taking on so much at home to cover for me while I was gone. The time committed was something I really underestimated. As many of you know, I was not the most confident in my expectations for much of my training. How could I actually run 100 miles in a little over a day, when I had not even run 60 miles in an entire week? Even towards the end, I was plagued by this lack of confidence. The last week before the race put an end to this with an amazing out-pouring of cards, notes, packages, thoughts, and especially prayers. I still remember going to pick up my race bib the day before the race and seeing those words, "for JOA" - that put any doubt I had before to rest. The day of the race, the first 50 miles seemed to fly by. The second 50 were some combination of self-determination, and not wanting to let anyone down who had encouraged me that week before. Somehow, this was the magic formula (along with a great crew and pacers), to carry me the second half.
Looking back about 3 weeks later, I learned how important support from others was to meeting this goal, and that I need to carry this forward in whatever ways I can. Secondly, I'm constantly reminded of the words of Fr. John Viall when he said, "always remember to pray", anything is possible with God. Third, I will always be in debt to my family for giving me the time to train for this, and now it's time for me to support them as unselfishly as they supported me."
John Farinelli 8/27/14
The Boys….
They had an awesome fishing trip with our friends, The Henegar’s this past weekend. They caught over 200 perch between all of them and the just had a blast being on the boat! They are doing great and adjusting to the routine of school.
God bless you all as you enter into this awesome time of year, preparing for Holidays, family time, and pure joy. Know that we love you and count on every inch of your support and more so, treasure it…..
Let’s all wake up tomorrow and be ‘here yet’
We wanted to leave you with the very amazing words written by our friend and board member, Mike Mysliwiec…..
They had an awesome fishing trip with our friends, The Henegar’s this past weekend. They caught over 200 perch between all of them and the just had a blast being on the boat! They are doing great and adjusting to the routine of school.
God bless you all as you enter into this awesome time of year, preparing for Holidays, family time, and pure joy. Know that we love you and count on every inch of your support and more so, treasure it…..
Let’s all wake up tomorrow and be ‘here yet’
We wanted to leave you with the very amazing words written by our friend and board member, Mike Mysliwiec…..
Duchenne Mom
Sunrise, a beautiful day. Duchenne
Call from a friend, lunch date. Duchenne
Laundry, cleaning, oil change. Duchenne
Dinner, homework, bedtime. Duchenne
Charge the wheel chair. Duchenne
Doctors appointment. Duchenne
Medications. Duchenne...
Stop this ride I want to get off!
But I can't, my sons life is at stake!
God help me get through this day.
Mike Mysliwiec
8/24/2014
Sunrise, a beautiful day. Duchenne
Call from a friend, lunch date. Duchenne
Laundry, cleaning, oil change. Duchenne
Dinner, homework, bedtime. Duchenne
Charge the wheel chair. Duchenne
Doctors appointment. Duchenne
Medications. Duchenne...
Stop this ride I want to get off!
But I can't, my sons life is at stake!
God help me get through this day.
Mike Mysliwiec
8/24/2014
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