Brotherly Love My favorite song regarding Duchenne is “A little bit stronger…” by Sarah Evans. I know I wrote about this song before and still every time I hear it, I think about Owen’s attitude in trying to fight this beast….
“Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
but I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
I get a little bit stronger.”
“Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
but I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
I get a little bit stronger.”
Owen, Tony and Pop Pop Game night I hear it and it is so hard not to cry but I have to remember I need to be stronger for Owen and that right now is the most important job I could ever have. So I do it, right? Just a little bit stronger.
You help me a lot with that.
We are rounding into Fall and before you know it we will welcome 2014. With 2013 almost over, we can say it has been one of the most successful JOA years yet. Together we have put over $50,000 into the hands of PPMD and we have another possible $10,000 to add to that with the next few events. With each dollar, with each person made aware of JOA and the beast we call Duchenne, Owen DOES get a little bit stronger. Certainly, you have made our fight amazingly Strong.
You help me a lot with that.
We are rounding into Fall and before you know it we will welcome 2014. With 2013 almost over, we can say it has been one of the most successful JOA years yet. Together we have put over $50,000 into the hands of PPMD and we have another possible $10,000 to add to that with the next few events. With each dollar, with each person made aware of JOA and the beast we call Duchenne, Owen DOES get a little bit stronger. Certainly, you have made our fight amazingly Strong.
So … on to the Strong….
You may know Brandi Rucinski and Elsa Kilbane are using their sweet calf muscles and more to run marathons for John Owen! So far they have raised tons of research dollars as well as many new supporters along the way. Elsa is running the Akron Marathon 9.28.13 and she and Brandi will run the Chicago Marathon (2 weeks later mind you!) on 10.13.13. Click their names to get their story.
Help us honor these super hero marathon moms by attending dinner with them on Tuesday 9.24.13 at Bella Amore 6031 Royalton Road, North Royalton 44133 where 20% of each check will go towards their research dollars to PPMD. Click the flier to download it and share!
Mostly we ask that you support these ladies through prayer as you can imagine running for 4 hours straight will take its toll on you!
I am super excited as I get to run the 1st half of the marathon with Elsa on 9.28! I am running a dual cause, for JO and for our friend Ruth Crane’s non profit, Ears to You giving hope and joy to cancer patients. If you can support me through prayer and pocket it would be much appreciated! Please click here to learn more!
You may know Brandi Rucinski and Elsa Kilbane are using their sweet calf muscles and more to run marathons for John Owen! So far they have raised tons of research dollars as well as many new supporters along the way. Elsa is running the Akron Marathon 9.28.13 and she and Brandi will run the Chicago Marathon (2 weeks later mind you!) on 10.13.13. Click their names to get their story.
Help us honor these super hero marathon moms by attending dinner with them on Tuesday 9.24.13 at Bella Amore 6031 Royalton Road, North Royalton 44133 where 20% of each check will go towards their research dollars to PPMD. Click the flier to download it and share!
Mostly we ask that you support these ladies through prayer as you can imagine running for 4 hours straight will take its toll on you!
I am super excited as I get to run the 1st half of the marathon with Elsa on 9.28! I am running a dual cause, for JO and for our friend Ruth Crane’s non profit, Ears to You giving hope and joy to cancer patients. If you can support me through prayer and pocket it would be much appreciated! Please click here to learn more!
Iron Horse Bike Ride
We had an amazing turn out for our inaugural bike ride on 9.15.13. We will certainly do this event again and as usual it could not have been done without the dedicated and awesome volunteers we have in our friends and family! If you missed it, you missed a great family, fun event.
Chili ~ yeah I said Chili!
Fall is the best time for Chili as well as visiting the cozy atmosphere of Country Stove, Patio & Spa! The two go together now for the second time like peas in a pod thanks to the generous hearts of the Federico Family! They will host the Chili Cook off on 11.2.13 from 1 to 3 pm and again this year all proceeds will benefit JOA!
If you are a Chili Master or a connoisseur please plan to attend this great event! Tickets are $10 at the door, $5 for kiddos for tastes of the best Chili in North Royalton. Any Chili Masters can enter their chili via http://www.countrystoveandpatio.com.
Hope to see you there!!
We had an amazing turn out for our inaugural bike ride on 9.15.13. We will certainly do this event again and as usual it could not have been done without the dedicated and awesome volunteers we have in our friends and family! If you missed it, you missed a great family, fun event.
Chili ~ yeah I said Chili!
Fall is the best time for Chili as well as visiting the cozy atmosphere of Country Stove, Patio & Spa! The two go together now for the second time like peas in a pod thanks to the generous hearts of the Federico Family! They will host the Chili Cook off on 11.2.13 from 1 to 3 pm and again this year all proceeds will benefit JOA!
If you are a Chili Master or a connoisseur please plan to attend this great event! Tickets are $10 at the door, $5 for kiddos for tastes of the best Chili in North Royalton. Any Chili Masters can enter their chili via http://www.countrystoveandpatio.com.
Hope to see you there!!
Latest on FDA and the boys….
As per our last update, the FDA gave the nod to Sarepta (the makers of the 'drug') to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014. So we anxiously await what 2014 will mean and if in fact we will see the drug that can save his life….
We did get some disappointing news about one of the trials for exon skipping at GSK. But we continue to hold strong, we are ready for the future, whatever it brings.
The boys started school last month and it was one of the more difficult school starts in that we just couldn’t get summer out of our skins! But now that Fall is officially here we just don’t have much choice. We are thrilled to pieces with the tender loving care that is provided to all three at St. Albert the Great. Rutger is in sixth grade and it is impossible for me to admit our oldest is in ‘middle school’. John Owen is soaring in fourth grade with Mrs. Massey and Wade is doing great in First Grade with The Amazing Mrs. Beskid.
The older boys are looking forward to their annual fishing trip with Tony next month, while Wade and I get to spend some time alone!
We hope you can make it to one of our Fall events, just so we get to see you, chat and catch up.
As per our last update, the FDA gave the nod to Sarepta (the makers of the 'drug') to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014. So we anxiously await what 2014 will mean and if in fact we will see the drug that can save his life….
We did get some disappointing news about one of the trials for exon skipping at GSK. But we continue to hold strong, we are ready for the future, whatever it brings.
The boys started school last month and it was one of the more difficult school starts in that we just couldn’t get summer out of our skins! But now that Fall is officially here we just don’t have much choice. We are thrilled to pieces with the tender loving care that is provided to all three at St. Albert the Great. Rutger is in sixth grade and it is impossible for me to admit our oldest is in ‘middle school’. John Owen is soaring in fourth grade with Mrs. Massey and Wade is doing great in First Grade with The Amazing Mrs. Beskid.
The older boys are looking forward to their annual fishing trip with Tony next month, while Wade and I get to spend some time alone!
We hope you can make it to one of our Fall events, just so we get to see you, chat and catch up.
I gotta tell you, this Duchenne stuff, it is so hard.
I mean we are used to the day to day – not that by any means it is easy and Gosh not that by any means we are Martyrs.
But it is the curve balls that are the toughest, the one or two people that put up walls that tear at your strength….
Kinda like the song, you know “I’m tired of hoping we can work it out.” And boy would it be easy if those one or two people were the same ones, they never are. You gotta start all over from ground zero, pleading your case.
Part of the Gospel today struck me like a lightening bolt, “I am too weak to dig and ashamed to beg.” I heard it and it finally all kinda made sense to me.
Tony and I are going to have weak days caring for Owen.
We will always face the monsters that just can’t join our fight to kill this beast.
And it is ok to realize that yes at times, we are just too weak to dig.
But that is why God gave us you, so we don’t have to keep digging and we don’t have to Beg…. So simply that with you and God in our corner we will not give a hour or a second or another minute longer.....
We are busy getting stronger……
Love you all and grateful hearts
Xoxoxx
The Dumms
PS Thank you for the love, support, chocolate and cards on my recent ‘weakest days’ you all ROCK MY WORLD!!!
9.22.13
I mean we are used to the day to day – not that by any means it is easy and Gosh not that by any means we are Martyrs.
But it is the curve balls that are the toughest, the one or two people that put up walls that tear at your strength….
Kinda like the song, you know “I’m tired of hoping we can work it out.” And boy would it be easy if those one or two people were the same ones, they never are. You gotta start all over from ground zero, pleading your case.
Part of the Gospel today struck me like a lightening bolt, “I am too weak to dig and ashamed to beg.” I heard it and it finally all kinda made sense to me.
Tony and I are going to have weak days caring for Owen.
We will always face the monsters that just can’t join our fight to kill this beast.
And it is ok to realize that yes at times, we are just too weak to dig.
But that is why God gave us you, so we don’t have to keep digging and we don’t have to Beg…. So simply that with you and God in our corner we will not give a hour or a second or another minute longer.....
We are busy getting stronger……
Love you all and grateful hearts
Xoxoxx
The Dumms
PS Thank you for the love, support, chocolate and cards on my recent ‘weakest days’ you all ROCK MY WORLD!!!
9.22.13
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