July 8th. It will forever be the day that changed everything.
14 years ago, on July 8th I was pregnant with my oldest son. It was the hottest summer I have ever experienced. I was so big and I was so hot, but I was happy. Our daughter was going to be a big sister. My husband was going to have a son. We had good jobs, a house we loved and I was living a dream.
13 years ago, on July 8th, we were in Toronto, Canada. My husband was a groomsman and our daughter was the flower girl for dear friends from college. We left for Toronto the night of the 4th of July and we watched fireworks light up the night sky as we drove through the night. The wedding was beautiful, our daughter had more fun than she had ever had and somewhere in the midst of the wedding chaos I started to think and soon found out we were pregnant, again.
11 years ago, on July 8th, I was pregnant again, with anotgher little boy. We laughed our at ourselves and with everyone at the speed at which our family was growing.
10 years ago, on July 8th, we were a happy family of 4. We had give our fourth son two middle names to make sure we used all of the important family names as we were sure our family was complete.
9 years ago, on July 7th, we were pregnant with our fifth child. We had a house full. My husband’s parents were at the house. They were going to stay with our kids the next day so that we could take our oldest son Max, 4 years old, to a specialist in Omaha. I’m not sure what exactly I thought the day in Omaha would entail, but it was nothing I could have expected.
9 years ago, on July 8th, I walked into the specialist office with what I truly believed was a healthy, beautiful boy. I left with a son that was going to die. It broke part of me. That day broke part of me.
After a brief talk of family history and a brief physical exam, the doctor turned to us. She said that she would confirm it with a genetic test, but she was confident that Max had Duchenne Muscular Dystrophy. For the first and only time in my life I experienced an out of body experience.
I saw myself sitting there in the exam room, just me and Jason and the doctor. The doctor had asked a nurse to take Max to another room (I should have suspected something awful at that point). There were drawings on the whiteboard of our family tree. The doctor was saying these words: wheelchair bound, not able to perform activities of daily living, weakened heart, weakened lungs, carrier, 50 percent chance, other sons, die by age 20. Words I could not comprehend.
My mom called me on the way home. I cried. I cried. I cried. I would not be able to tell you what I said to her, but I remember we passed a semi-truck when I was on the phone with her.
I cried all the way home. When I think of that day, as I am right now, I experience the same brain dehydrated, broken hearted, fierce headache. When I think of that day, I can feel how bad my eyes hurt from crying.
I remember getting home and not letting go of Max. He was asleep, exhausted from the day. I laid on the couch, 10 weeks pregnant and held him to me. Silent tears slid down my cheeks and then my neck, slipping between the skin on my neck and the skin of Max’s cheek. The tears binding us stickily together.
I remember my father-in-law. He kept rubbing his head. And in his own heartache, as we explained what the doctor said, asked, “will his mind be okay?”
I kept laying down. It was as if Max had died already. That is the way I grieved. I know I scared my husband.
I remember that same day, going down to my then 9 year old’s bedroom and telling her. She never cried, but the word wheelchair upset her. She couldn’t imagine. Neither could I.
And somehow, at the very end of that day, my husband started a fire pit and we had s’mores and I watched the kids play on the swing set, the same one we have now.
9 years ago, on July 8th, at about this time, you can maybe begin to imagine the number of pieces our shattered hearts were holding together as we began to realize the life we had prepared for had just been flipped 360 degrees and after hearing the same diagnosis 2 more times we would begin a journey we never wanted to be on.