HARD THINGS
When The Parent Project MD asked for permission to use one of Mitchell's photos for this white paper I was and continue to be very supportive. However, I wasn't prepared for my emotional reaction to seeing this particular photo. It was, and remains, difficult to look at because our little son's heart was failing and we felt so very helpless.
At the moment this photo was taken Mitchell had just finished one of his last Nerf gun battles with his best buddies. His loyal friends called him “commander” and listened to his strategies and followed his lead. It was so cute to see. Mitch wanted so badly to be a little boy and do what little boys do. It wasn't long before he became faint because his blood pressure was so low and his body so weak. This photo shows his mother holding and reassuring him when he hardly had the strength to stand. All the while Mitchell kept pushing himself up because he just wanted to keep up with his friends. He wanted to live. He wanted to thrive.
So while this photo is hard for me to look at, it is necessary and it is relevant. Life has a way of dishing out hard things and often there's little we can do about some of the difficulties we encounter. But we can choose how to respond to hard things, to rise above them and use those difficulties to help others. And if Mitchell's story can help save lives and heal hearts (physically, emotionally or spiritually) we will do all in our power to help.
On June 29th we will be speaking at PPMD's International Conference in Baltimore. We've been asked to share Mitchell's Journey and help put a face and story to cardiac challenges related to Duchenne Muscular Dystrophy. Putting patients first – a worthy endeavor. That is the goal of PPMD, and it is our goal to do all in our power to help them.
Mitchell's Journey hopes to personify the many challenges that surround DMD ... because they are real, and they hurt ... and they kill. In the end, we hope Mitchell's Journey can point to hope, healing and finding happiness - no matter our individual hardships.
http://community.parentprojectmd.org/profiles/blogs/putting-patients-first