Waiting can be so difficult. It seems as though I have spent much of my life consumed with waiting. While my life will still be filled with periods of waiting, none will be has difficult as the past 15 years.
Today Wednesday November 18 my middle son Cody has begun the first stages of participating in a study for treatment of nonambulatory DMD patients with ataluren Cody is the first child to take part in this phase of the study in the world. The years of waiting for some treatment since Codys first diagnosis almost 15 years ago with this disease has ceased, giving us renewed hope.
I watched today as Cody performed multiple test and set standards of performance for the boys to follow him. My eyes at moments filled with tears of admiration as my child dilligently struggled to perform range of motion most of us never give thought to. As he accomlpished each task he beamed with pure confidence in his ability. Never once giving up as each test of strength became increasingly harder. Cody spoke today with excitement of his plan to become stronger. Joy over came me, this truly is a time of thanksgiving for us.
As we enter into this phase of the study I carry with me a light I have been blessed to see. My youngest son Josiah has been part of the first phase in ambulatory DMD children taking ataluren, for a month now. We have just begun to notice a small increase of strength and walking. While we are still at baby steps each effort and increase of strength brings me joy beyond words. Where once I saw fear and disappointment in my Josiahs eyes I now can see
determination and confidence. I see restored faith in himself. I rejoice in the blessings that once were only in my dreams.
While we enter into this new journey of our lives I am filled with the belief that waiting and hoping, while hard and almost impossible at times, often it is all we can do. Knowing, that had I given up on seeing my sons thrive we would not stand where we are today. Having had the courage to face the many obstacles in our way has now given my boys another outlook on their life. After all, I was told Cody would never make it into the research study. Waiting does not mean dismissing ourselves from working toward our goal. Staying focused and driven in our mission may be at times the only way to keep our hope alive.
We may stumble and even fall at times but we will always pick ourselves up again. We will take baby steps and some tims stray away from the path. We will not be afraid to be scared. We will continue to have the courage to turn to those that love us when we feel we have yet hit another barrier. we will follow our heart and take chances. We will wait in hope and joy and embrace every triumph. We will not ever give up.