I’ve been having these little, almost imperceptible moments over the last couple of months. Moments that I would take in, understanding they were valuable and just hold them.
These moments have been lessons in trust. There in an underlying sadness in my life. My boys diagnosis makes me sad. It’s not what any parent would want for their child. With the exception of a few difficult seasons, my family does its best to find the silver linings, live in the moment, find joy in our journey and make everyday count. Life is precious and short and we are going to soak it up the best we can.
I’ve found that prayer, quiet contemplation, and adoration have become part of the formula for me to live life this way. It’s often in the quiet that either these moments come to me or that I have time to take them out and think about them.
I was very emotional one Monday morning. My sons are doing well considering their diagnosis, but they have moments of intense suffering still. One was in the midst of suffering and I was hurting for my son. I was in the church praying the rosary and meditating on the glorious mysteries. The first of these two are the resurrection and the ascension.
I was thinking about Jesus’ mother. She had watched her son die a slow and painful death when he was crucified. She was there. The resurrection, I can only imagine was to her as it is to all of us, a miracle. She could see her son again. I’m sure that every parent that has every lost a child wants to see their child again and Mary did. She did see her son again! I wonder how her heart must have been so full of happiness at seeing him.
Then the ascension. He was gone again. I was at the church that day hurting and emotional as a mother. I thought about Jesus’ mother again. She must have known he would go again, as faithful and devoted, she knew he would go to His Father. But, as a woman, as a mother, it had to hurt to watch him go again. To get him back and then say goodbye again. I know that she knew and believed she would see him and again and she did, but I wonder how she must have ached and yearned to see him all the rest of the years she was on Earth.
I had never thought about any of this before. I felt like Jesus was pointing me to his mother, that he needed me to learn from her. I didn’t know what he wanted me to learn. I made it an Advent goal to study his mother and try to grow in my relationship with her and to learn what he wanted me to learn, whatever that was. Honestly, there are many things he wants me to learn and it will be a relationship I nurture the rest of my life.
Another moment came the Wednesday before Thanksgiving. I stopped into the church to pray a rosary. I remember at one point looking up. To preface this next part of the story, St. Cecilia is a beautiful Catholic church that is over 100 years old. It has beautiful stained glass windows and gorgeous station of the cross statues adorning the walls. I looked up from my prayer. I was sitting next to a wall about 10 rows behind a statue of Jesus falling under the weight of his cross. I looked into the face of Jesus and my heart immediately felt a pang of sorrow. I looked away at the pain and then back into his face and the same pain penetrated my heart. I was so sorry for his suffering. But what he seemed to say to me at the moment was love is worth all the pain in the world.
These moments and thoughts have been with me. I think about them often and I wonder how he wants them to change my heart.
We took our boys to the neuromuscular clinic last week. Many things were happening that day. It was a new clinic to us and by the end of that 9 hour day we would have met 10 or more new specialists, nurses and other important persons involved in the care of our sons. It was also started very early and my oldest was tired and stressed about the clinic change and the discussion we were in the midst of. He was hiding behind his mask and pretending not to listen but listening anyways. His behavior felt a little disrespectful to the doctor, but very teenage boy as well.
The boys endure some very strong and harsh medications to help them manage their disease. It is so strong that it suppresses some of the things their body should do on its own. Needless to say, we have to manage those things through medicine. We were talking about a change in medication. He needed to have a say. The doctor looked at him and asked if he would rather do option A or option B? My son said, “whatever my mom thinks is best.”
I’m crying now. That absolute trust my child has in me to make important, life changing decisions for him is one of the purest, most overwhelming feelings of love I have ever felt. That piece of my motherhood, the Duchenne mom piece that I never expected and can’t believe I am figuring out how to do, is something I take very seriously. I study, prepare myself to make decisions, take the doctor’s knowledge and experience, my knowledge and experience, the knowledge and experience of other parents,my sons needs and desires, guidance through prayer and put that all together with my husband and we make the best decisions possible with the information we have. Considering all of that, I cant believe someone trusts me so deeply and naturally. That he knows I would never do anything to harm him, and that every decision is made to help him.
Trust is not natural to me. Life experiences took that away. I try to be independent and feel in control and safe if I am doing it on my own. Except, that is not how or why we were made. I’m so thankful for the people God put in my life that make trusting easier, but my first tendency is still to do it on my own.
That’s what all the moments have been for. Jesus wants me to trust him. Jesus wants my trust like he had Mary’s. Jesus wants my trust like I have my sons’. Like Him, I love my children more than words can describe, I love them fiercely. Jesus is love. He’s wants my absolute trust that just as I do for my children, he is doing for me, only of course, he does it perfectly.