Today we celebrated my youngest daughter, Mary Pearl’s, second birthday. And after two years I am finally ready to tell that story.
About two years after the boys had all been diagnosed with Duchenne Muscular Dystrophy I had my heart checked. As a carrier, there was a chance my heart could be affected. And it turns out, my heart was affected. I was diagnosed and started medicine that did not make me feel good. After four diagnosis-es I was distraught. At the time I would never had admitted it, but now I can see I was depressed and reaching to make things right again.
I home-schooled the boys that year, trying desperately to slow down time. At that point, I just wanted the hands on the clock to stop turning. I wanted to be stuck there. I wanted to be stuck forever where all of my children were healthy and alive. That was also the year Max was accepted into a clinical trial that was showing promise,real promise, at slowing down progression of the disease.
Those things, home schooling and the clinical trial were distractions. I could tell myself I was tired and sad and lost because those things were hard and those things were exhausting. Now, I know I was trying desperately to do anything except feel; feel the pain, feel the joy, feel any support; I did not want to feel anything. I was praying and begging not to feel. To feel meant to hurt and I did not want to hurt anymore.
After meeting with our parish priest, he suggested a healing Mass. Jason and I were completely willing. Our priest was able to get a relic from Father Michael McGivney. We sent a novena to all of our friends, family, social media accounts. We prayed it everyday until the Mass. The Mass was beautiful. We prayed for healing, we prayed for a cure.
Four or five months later, I realized I was pregnant. Honestly, I was not happy. I was scared to death. I already had three sons with Duchenne and I was as scared as I have ever been about anything that I was pregnant with another son with Duchenne. For 17 weeks we did not tell a soul. I even begged my husband to call our doctor. I didn’t want any “I told you so’s.” Jason asked him not to question our decision and just be our doctor. We were blessed to not only have the doctor be a doctor, but he turned out to be a support system and friend through it all.
After the three boys were diagnosed. We decided we could not have any more children. We didn’t decide if we wanted more children or not, we just decided we could not. We could not risk another son with Duchenne. And yet we did not do anything permanent. We decided to stay with Natural Family Planning. Duchenne already promised to steal so much from us. We decided we could not let it steal our faith. We continued to follow the teachings of the Catholic Church.
At 17 weeks pregnant we were scheduled for a ultrasound to find out whether the baby was a boy or a girl. Our appointment was scheduled for 1:00. I went to Noon Mass. I went to prepare myself for another son with Duchenne.
After Mass I lingered. I sat in the pew for awhile; avoiding any rush to get to the ultrasound and preparing myself for another son with Duchenne. How do you prepare yourself for that?
I was sitting there and felt a peace come over me. I heard an inaudible voice say, “It will be okay. Call her Mary.”
Call her Mary? Her? Mary is a girl’s name. The baby will be a girl? I couldn’t understand.
I went to my appointment. The ultrasound technician said girl. We questioned her. She was adamant it was a girl, that it was very obvious. With tears in my eyes, I looked at my husband (who had no previous knowledge of my experience at Mass) and said, her name is Mary. Half expecting him to look at me like I was crazy, he looked at me with a smile and said, “Okay!”
Mary Pearl Vertin was born September 25th at 4:47 am. She weighed 6 lbs, 5 oz and was 21 inches long. She was our miracle. When I first laid eyes on her, my breath was taken away. She had the darkest brown eyes I had ever seen and she looked directly at me; her look was slow, she was not flailing or screaming. She just keep eye contact with me. It was powerful.
Mary has brought so much light into our lives. She brings laughter and love and cuddles into our life. She brought life back into my life. We were so muddled in the diagnosis. We were so focused on the 20 year future that meant we would lose our children. I was distraught. I was not a good wife or good mother. I hurt the ones I love because I was hurting so much. When Mary came, there was light again.
All children are heaven sent; but Mary’s purpose…well I think I know, but always wonder. Remember that healing Mass I talked about. I believe Mary was the answer. We prayed for healing. I had a cure for Duchenne in mind. God gave me Mary. Mary was glue for my broken heart. She helped me piece it together again; maybe she helped me peace it back together again.
She brought his wife back to my husband. She was a sister to my sister-less daughter, she was small and innocent and needed help that even a weak boy with Duchenne could give her, she was a healthy sibling, she is a soul sister to a little boy with brown eyes, and a play mate to our youngest.
I will never stop being thankful. Had we followed the temptation, the suggestions from many to have done something permanent instead of following what our hearts were telling us to do, we would have robbed ourselves of the joy and healing power of this one beautiful child.