This lent I have been using an idea I learned from my favorite podcast, Abiding Together. At the end of every episode the three women will all give their one thing, sometimes something spiritual and sometimes not. The one thing is something that has helped them grow in faith or in some other way.
Last year was one of the hard ones for me and I needed to focus on all the positives in my life and find my joy in the journey again. Basically, I am using my one things as a gratitude journal. I’m using this lenten season to grow in my ability to live out 1 Thessalonians 5:18, “In Everything Give Thanks.” I want this. I want this heart. I want, even in times of sorrow and suffering to say, “thank you Lord, for allowing this so that I may grow closer to you.”
I have been using social media each day to post my one thing, on instagram and facebook, both accounts are under my name if you are interested in following the rest of my days this Lent. Today, my one thing is being mom to my three sons with Duchenne Muscular Dystrophy. I’ve been writing this one in my head for the last several days. It is long and deserving of a blog.
We were on a family walk. We’ve been going two miles everyday of quarantine to get out of the house and for change of scenery. My two children that were walking turned to take a different route home. My three children on wheels were ahead of us, driving too fast for my husband and I to keep up. I watched them for awhile. They were driving side by side by side. They were laughing and joking and being brothers. The beauty of it struck me. I tried to verbalize it to my husband, but I failed to use the right words to truly get across the inflated feeling I had in my heart. It was so full I thought it might burst. I felt special, blessed, in on a secret.
I’ve thought about the moment over and over the past few days. How do I express what it means to me to be their mother?
I love all of my children with every fiber of my being. I remember the first moment of motherhood. Extremely young and honestly, unprepared for the amount of love that would rush my body when I felt the weight of her little body in my arms.
Those that know me well have heard me say and many of you may have read me write that I was scared to be a mother. I really didn’t even know what the word meant. I was convinced all the months of my pregnancy that I wouldn’t know what to do. Having been removed from my own mother several times, it was a real fear for me that I might also have my child removed from me.
Was I experiencing extreme anxiety? Yes. I didn’t know it then. I didn’t know how unrealistic it was that I was assuming that was part of motherhood I would inherit.
The moment I held her, everything in my world felt right. It felt as though I had found the thing I was meant to be. The fears left me as fast as my love for her rushed through my body.
I was very fortunate that my first job after college and as a young, inexperienced mother was as director of an Early Head Start program. A program designed for mothers, many of them just like me, young and inexperienced. A program that included parenting classes, home visits, vast amounts of information on how to help your child learn, lessons on how to become your child’s first teacher. I guarantee I learned as much from that program as director as any mother enrolled in the program. I worked with mothers from all over the world, Mexico, the United States, Sudan, Guatemala, Cuba, etc. I was teaching a class about child care in Grand Island to a group of Sudanese refugees when I learned the art of the bounce-and-rock-and-pat-the-baby-to-sleep secret, watching a woman from Sudan magically put her very screaming baby down for a nap in record time. I used that method on my next five children; dare I say, conquered it.
I was also very fortunate to marry a man that brought me into the Catholic church. A church that believes motherhood is a vocation. A faith that sees Mary, Jesus’ mother, as our mother. A mother Jesus shared with all of us to help us grow closer to her son.
It was as a young Catholic mom that I first learned about the sorrows that pierced Mary’s heart. It was from Mary I learned that you can know a sorrow before you experience it. Mary knew sorrow before she ever watched her son crucify. It never stopped her from being the mother that her son needed, or the mother that the whole world needed. Little did I know then, that I would someday share with her the feeling of sorrow before it was experienced.
I watched other moms, gleaning from their already established abilities. I read every parenting book and listened intently to my daughter’s childcare providers that would give me suggestions. I would, like everything else in my life up to that point, study how to do it. I would study how to be a mom.
I learned how to be a mom. When we were blessed with each of our other five children, I felt as ready as you can ever feel about adding children to your family. Then, our second child was diagnosed with Duchenne Muscular Dystrophy. A disease I learned in just a matter of minutes would take my son from me, would kill him. As the first two years of diagnosis passed, another two sons were diagnosed.
There was not a book to study to tell me how I was supposed to be the mom they needed me to be, there is still no book with all of that information in it. Instead, I had to rely on the things I had already learned and I had to learn to trust my instinct. I found an amazing group of mothers that were already rocking motherhood in this world of motherhood that didn’t have a book. I watched them and I learned from them.
I leaned heavier on my faith and started to learn the stories of the saints, so many of whom owned stories that seemed impossible but who left lessons and directions on how to do it. Lessons as important as how to die.
An example. I saw this just yesterday on twitter. Someone retweeted a tweet. I can’t take credit for it, but apologize for not being able to give it to the right person either. It was a lesson from one of the newest saints, Pope Saint John Paul II.
At the end of his life, suffering greatly from the affects of Parkinson’s disease, he still addressed massive audiences. He didn’t want people to look away, he wanted them to see him. He wanted the world that he taught how to live, to also know how to die. He wanted us to know that the saints were there for us and brought us hope, not because they conquered the world, but because they allowed Christ to conquer them. There is no one like a saint, that will teach you how to live with joy, how to suffer with thanksgiving, or how to die with hope. These are the lessons I need to study and learn to be the mother my sons will need me to be.
It’s been 10 years since diagnosis. I cared for each of my sons as newborns and infants and toddlers. I changed them and cleaned them. I took care of them just as all the mothers reading this cared for their newborns and babies. They learned to become independent as we celebrated those milestones. Then, almost as quickly, they started to lose their independence. As the years led up to this, I dreaded it. I was again very afraid I would fail at being the mom my children needed me to be. It is here now, but it is not a feeling of dread that consumes me.
I have been so blessed. Blessed by the experiences at Early Head Start, blessed with a God fearing man that brought me into the church so full of goodness and teaching that it fuels my heart, and blessed with these beautiful boys.
I worry about the boy’s dignity. As they grow older and disease progresses, we will continue to face experiences and circumstances that could threaten that, but I know it will also be respected. I feel privileged that they have a trust in me to both care for them and protect their dignity. We have conversations I never thought I would have to be had. They may be uncomfortable at times, but we grow so much closer because of them.
I share my boys pretty openly with the world. They are contagious. Their smiles, laughs, fearlessness, perseverance, and joy even in the face of obstacles and suffering attracts people with a magnetism I find rare in this world. It’s a pull to be part of something very special; so very special, that it is rare for a parent to experience this kind of love. It’s not just for the three with Duchenne either. My other children have been privy to these same experiences and as parents we are privy to share a special love with them also.
It doesn’t escape me that these words have been put on my heart during the Covid-19 isolation, when the ones sacrificing the greatest are caregivers, the nurses and doctors and other healthcare professionals. Caregiving is a gift. I hear so often, that so and so is so lucky to have a mother, father, daughter, spouse like that to take care of them. The truth is that it is us mothers, fathers, daughters, and spouses that are most blessed.
It is heartbreaking at times to watch the ones I love suffer? YES. Is it exhausting at times? YES. Do I have bad days? YES. Do I love my job? Yes. Would I do it again to get to be their mom again? YES. Do I celebrate the successes? Yes. Do I count being their mom amongst my greatest blessings? Yes!
These boys have changed my life. Knowing the little details of their life, walking next to them on their journey, and being their caregiver hold more beauty than even the grandest of sunsets, the biggest of cathedrals, or the fullest of moons. It will never set, it will never fade. It is everlasting.
Today, my one thing is getting to be their mom.