It is hard to believe we are just one week away from our biggest Duchenne derailing event this year ~ our Picnic in the Park! We have close to $30,000 in product donations to give away! We are so excited for again we have awesome entertainment, food and fellowship including; Jabez, The Polka Pirates, The Cleveland Breakfast Club, Hole in One, Dunk Tank, JUNGLE TERRY, LASER TAG, PIN BALL, Famous Dave’s, Tommy’s Pizza and Dairy Queen.
Click here to view the many many raffles! Make a point to be with us!
Thank you also to our many volunteers that always make this night a huge success!
We were so excited that Owen was selected as the July Voice for PPMD. He conducted a very cute interview with Will Nolan. Please check him out at this link and share the great work that Parent Project is doing for our boys!
Special thanks to our friend Rachel Manias who literally was pounding the pavement in DC yesterday trying to encourage Senator Brown and Senator Portman to sign the FDA letter urging the FDA to move expeditiously with respect to a request for the approval of the accelerated marketing application for eteplirsen. PPMD, Jett Foundation and our friend Jenn McNary have been working tirelessly to push our government to approve this potential life saving drug….. and still no word, but we are trying.
We had a blast this Wednesday with the 2013 Jett Riders! We had tons of fun in the pool, slip and slide and with our family. They set off Thursday morning for Massilon and will make their way to Point Pleasant NJ on their cycles by August 3! Safe travels and God bless you all!
No, you never will”
Monday night, I fell asleep to the sound of a cherished heartbeat. You see, after an hour or so of tucking Owen into bed, he was still awake. He called to me with his shirt up, hand on his chest and tears in his eyes.
I immediately knew he was covering his heart. He said, “mom, this hurts, don’t touch it.” I asked him if I could have a listen to his heart, I did and it was racing.
I looked up and saw that he was crying (not really realizing it when I first came in). I asked him if he was in pain, he said no it just felt weird. I asked him why he was crying, he broke down.
And shook his head
I grabbed his hand and asked kissing it, “Please tell me, honey, you can tell me anything.”
After a few thoughts whirling in his head and a wipe of a tear, he said, “I’m scared.”
It was a calm night, in fact the perfect summer night, no rain, no thunderstorm to fear, no scary movie just watched no homework in sight, (what could he possibly be scared of at this hour?)
“Oh, honey, what are you scared of?”
He said, “You know, my legs, now my arms” then he looked down toward his hand on his chest and I knew then he was afraid for his precious little heart.
(Sinking feeling inside of me…. How to respond?)
I asked him to remember what Dr. Arruda said about his heart at his last visit, he said, “She said it is perfect.”
I told him that she was right and had him repeat that Dr. Carl said his lungs were in great shape.
Few more deep, deep tears, “but I’m scared, mom.”
He gave me a monster hug and I told him that it was ok to be scared, but he does not need to be scared all by himself. I told him we are always by his side and that we love him so much.
After a great long hug, I went to get Tony and we decided he needed to sleep in our bed.
I think we are all pretty much scared, running scared in truth, and really needed each other close to just soak in the present and the love that we hold so deep for each other.
Of course, once settled in Tony and Owen engaged in Princess banter and called each other Princess Leah then went through the manly mental toughness they share. Though I watched as Tony fell asleep soundly surrounding himself with Owen.
As I settled in, he threw his arms around me and snuggled me down so my head was on his heart. I would not move an inch, nor did I for a very long time as I listened to the heartbeat that I hope to never forget exactly how it feels.
No, I never will.
God bless you