Today marks 8 years since our world got flipped upside down with the 3 words “Duchenne Muscular Dystrophy.”
I distinctly remember my tears. We made it home from Omaha after the diagnosis. Max fell asleep, exhausted from the long day at the hospital. I laid on the couch, 10 weeks pregnant and so full of sorrow that it leaked from my eyes in a never ending stream of tears.
Max was asleep on my chest because I could not bare to lay him in his bed. All I wanted to do was hold my boy. My beautiful son that a doctor had just told me would die because he had Duchenne. I didn’t want to wake him so I just held him and I didn’t sob or cry out loud, I just let the tears stream.
My in-laws were here with the other kids. I remember my father in law, very upset, and he asked, “will he still have his mind.” He was relieved when we told him yes.
After the tears quit falling, I tucked my 9 year old daughter into bed and somehow kept it together when she asked me what was wrong with her little brother. She wanted to know if he would need a wheelchair. As much as we had tried to keep the previous weeks’ conversations and concerns to ourselves, she had heard enough to be very scared.
It was the hardest day. To wake up with what I assumed was a healthy boy and go to bed with a son that had what I was told was a death sentence.
I almost didn’t acknowledge this day. I hate reliving the pain of that time period.
I thought about it all day. And I thought, 8 years ago I never would have imagined the happiness that exists in our lives today. I never would have imagined Max would be walking, acting in plays, and have supportive and loving friends.
I never would have thought we’d have another baby.
I never would have imagined so many potential therapies that could change the outcome of the disease.
I never would have thought I would say things and live things like, “count your blessings and not your burdens.”
I never could have believed that the sum of all the joys in our life would be bigger than Duchenne.
But yet, they are. I see our blessings. Duchenne made us stop dreaming of the unimportant and made us start living in the moment with the ones we love.
We learned to advocate, we learned to love better, we grew strong enough to make really hard decisions, and we became the family we were always meant to be.
So yes, that was the most painful time in my life, but out of that pain grew a beautiful joyful life. We have plenty of hard days and are guaranteed a fair share more hard days, but the good will carry us through.