Tony & Jen Dumm sent me this letter from North Royalton , Ohio. Initially, I read it because I was curious to see if they were Massachusetts' parents. I read on because they had that gift where you feel as if you know the family.
I fell in love with the Dumms. I so could relate when Jen talked about lying down in bed with the kids at night. And I could relate when she talked about the innocence of her son and the terror that she feels (not because I have a special needs child but because I can only imagine what she goes through).
Their Web site is just as special. They are real, and I get it. I think you will too.
While we don't usually do stories on families outside of Massachusetts, I just had to share this with you.
Check out their Web site. They have the gift!
On being John Owen’s Mom
by Jen Dumm
Ok so my day is most likely like yours – actually, our days start the night before, right? Pack lunches, set the coffee, lay out the kids cloths, double check the homework – then go through the whole AM thing to getting the kids in bed by 8 or 9 pm . I call it crazy mom nuts. But a good crazy mom nuts, ya know?
We have three boys, Rutger (7), John Owen (5) (Owen) and Wade (2), 2 dogs and a very busy life. Usually, when I hear one of the boys ask, as I pass by their room well after bedtime, “Mom, sleep with me please.” Internally, I sigh and think of laundry or dishes – but occasionally, I remember that all that can wait. So tonight it is Owen or J, O, John, J bug, Owen, John Owen, buttercup, many pet names any time of day, he prefers Owen. He is 5. Looking at Owen you see the innocence in his face, the same look you’ve seen in your kids. The look back at you as they run to play, the tears of disappointment, the laughter at a funny joke, the joy of a new puppy, you see that innocence so easily in his face. As I stare at that tonight I cannot believe his little muscles, since birth, have been wasting away inside him. You see, Owen has the most fatal genetic disorder out there, Duchenne’s Muscular Dystrophy (DMD).
Laying there looking at our son, I cannot grasp what his future holds. Today, he is a typical 5 year old; you would see him on the playground with his friends and think nothing of his tad sluggish gate. You would never know that statistics have him wheelchair bound in 5 to 7 years. Everyday tasks for him will be a thing of the past, brushing his teeth, holding a telephone, eating, heck even breathing. Things that he can do now without a thought will be stripped away from him before most of us got our first job!
Owen’s body does not make dystrophin; in short his muscles will not continue to function without it. It is a progressive disease that will slow every muscle in his body to a halt. Laying here looking at his innocent face, he has no clue what challenges are ahead for him. Lucky for Owen, there are many amazing people in the world working hard to find a cure; Parent Project Muscular Dystrophy (www.parentprojectmd.org), The MDA (www.mda.org), Charley’s Fund (www.charleysfund.com) and more. Lucky for us we have Owen and we have the power of hope and faith.
Shortly after his diagnosis at age 4, we began John Owen’s Adventure, Inc. Our non-profit raises awareness of DMD and other childhood illnesses. We live John Owen’s Adventure every day with him; one click of your mouse to www.joainc.org will let you experience his journey! You will see that familiar look of innocence and we will hope that, together, Owen will not lose his before his time.