Looking Back and Ahead: Reflecting on My Words for 2020 and 2021

Resilience was the word God put on my heart for the year 2020. When I chose the word I thought the year would be about healing some past hurts. It did, but in ways I did not expect, but even more unexpected was the worldwide pandemic that literally changed almost everything. My life, the world, my family…none of them look the same. Resilience was what I experienced, what my kids experienced, what I think the world experienced.

At home learning for the kids. Isolation and social distancing beyond what most of their peers were and are experiencing. My oldest had her freshman year of college and life in the dorms cut short and never experienced an entire freshman season of husker track. She had to move home early. A very sick and hospitalized mom and tayta (grandma). A broken bone for Rowen and our first major set back with any of the boys with DMD.

Periods of pure stir crazy from being shut in and away from everything we knew up until this year. Grief for what we were losing and how the world was changing. Two periods of quarantine, an intensive home remodel that we lived in. My full-time employed husband suddenly acting head coach for a varsity football team he had played for decades before. An election unlike any before. Rioting and tension and unrest.

Before that my husband’s short journey with skin cancer, a season ending injury for Chance and our first hospitalization because of Duchenne for Rowen.

We made it through all of that and regardless if 2021 will resemble that in some way, we were resilient in 2020. I learned so much about my own heart, the broken hidden little areas that needed access to the light. Visiting those areas, acknowledging those areas and finally giving them up was resilience.

I’ve spent several years chronically my joy in this journey of life. In 2019 I fell behind. I was so sad about the changes in Rowen’s disease progression that I forgot to look for the joy. In 2020, in the midst of pandemic, God helped me find my way back. Overall, our year has been joyful. I am counting the joys and blessings again.

Jason is home now; for a long time before the pandemic he was dreaming of a home office and now he has one permanently. He is happier. He is here for everything. When I need extra help with the boys he can come out of his office and help. He knows the kids better and he and I know each other better. I can honestly say we are more in love now that we have ever been. As we prepare to celebrate our 20th year of marriage in 2021, it feels like a pretty good place to be.

When everything else in the world shut down and things stopped my family experienced kindness that did not. In the middle of a pandemic we were given $70,000 to buy an new handicap accessible van that will hold 3 power chairs. Another $10,000 to purchase and install a ceiling lift system. Our boys are so loved. It is a humbling and beautiful and tear-producing and amazing gift to experience a love like that.

Rowen did fall and break his leg and he does walk less; but he does so much more!!!! His quality of life has improved.

I was brave enough to listen to an answer to a prayer I wasn’t sure was right. It was and my son is happier than he has been in years! I also learned that if you are going to ask God to help you where you are, you better be ready to say yes to what he asks! The thing he has planned is so much better than you can imagine will go wrong. Perhaps the best lesson I learned for 2020!

Lexi moved out permanently and I was so sad about that. But, as much as I thought she would not be here enough, she has come for several visits and stays and humbly shares the bunk bed with a 6 year old. Even more though, she has grown into such an adult. She balances school, work, and the demands of being a college athlete and pays her own rent. As parents, we could not ask for more. We are so proud of her and love seeing the woman she is going to be start to take bloom!

The kids have been fighting since Thanksgiving. The colder weather has basically forced them to live on top of each other as we avoid going out and crowds during the pandemic. It’s not been the most joyous part of the year; but they are happy and healthy!

Another positive thing this year brought was a pool! With everything closed last summer we finally did what we’ve dreamed of for years and the kids benefited so much from it! And finally, after years of talking about finding a neuromuscular clinic closer to home, the pandemic forced us to take that step and we could not be happier about the change. We are even going to be able to switch our clinical trial site to Denver so that we don’t have to take separate trips to Kansas City in the future. It could not have worked out better.

That’s 2020 for you. The word God gave me was perfect and so I’m trusting God. My word of the year 2021 is trust.

It’s not the word I wanted. I wanted love. If someone were to ask me what I want people to remember about me once I’m gone I would tell them that I want to leave a legacy of love behind. That is my goal, that is what I want out of this life.

God said the word this year is trust. I knew it was the right word the moment it landed on my heart. I heard someone say recently that if you think you are not loving Jesus enough, it is not a love problem, it is a trust problem. When the word trust fell I knew it was exactly right. I need to learn to trust Jesus more with my life, with my family, with my future. If I want to love better, I need to trust better and so I pray that 2021 is a fruitful year for trust in my life and I pray that sooner than later I can love like he does. I’ll be back to share my journey with this word. I know already that his first challenge to me has been issued and I will work to love me like he loves me and trust myself with what he trusts me with.

Happy New Year friends! I’m sending my love and prayers for all of you.

Finding Trust in the Moments

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.