I have a confession to make. I love being a mom, and I’m honored by my role as a caregiver, but sometimes it exhausts me to my core. Sometimes I don’t feel like being patient. Sometimes I don’t feel like being gentle, kind, and loving. I care for my children every day, and I wouldn’t change that for the world, but it’s also really hard.
My two sons have Duchenne, so I’m not just their mom, I’m also their caregiver. I care for their needs day and night, and those needs are constantly changing. I love them with every ounce of my being, but that doesn’t change the fact that being in charge of someone else’s needs is extremely tiring.
I view my role as a caregiver, much like I view motherhood, it’s a great privilege. It’s a beautiful, life-changing experience that has made me a better person. I’ve been blessed with a whole new perspective. I’ve learned how to appreciate the simple things in life, and I’ve become more patient and compassionate because of Duchenne. I truly believe that being a mother and a caregiver is my calling.
I’ve always been a very nurturing person, even as a child. I remember playing house and pretending to be a mom. I even tried to push my poor cat around in a stroller, which she did not enjoy as much as I did. As I got older, I always tried to be a shoulder for my friends to cry on. Marriage has given me even more opportunity to express affection, compassion, and support. I’ve truly enjoyed caring for my husband. I show that I love him through my actions, as well as my words.
When I became a mom, something inside me came alive. Motherhood felt like my purpose in life. It’s the only thing I’ve ever really felt good at. I cherish every minute of it, even the hard parts. I’m not a perfect mom, by any means, but I am a happy one. I value my role with a passion, and I always will.
When my boys were diagnosed, one of the first things I said to my husband was how good I thought we’d be as Duchenne parents. “We were born for this,” I said, as we struggled to process the news. I’m a caring, loving, and protective mother, and my husband is a strong, compassionate, and hard-working father. I knew we’d make a great team with what we’d been handed. Little did I know how quickly our boys would lose abilities and how difficult it would be to watch, but I think we’ve done well adjusting to their changing needs.
I’m careful to never make my boys feel like their needs are a burden to us. I make it a point to watch how I respond when they need me. I want them to know what an honor it is to take care of them. Feelings and painful emotions are constantly trying to dictate my attitude, so I work very hard to combat them with loving actions. I want my actions to drive my emotions, not the other way around.
I’ve always been someone who leads by emotion. If I’m upset, you’ll see it on my face like a neon sign. I’ve always had a hard time being anything but genuine. I think that’s a good thing in most cases, but it’s not always helpful when it comes to parenting, marriage, or caregiving. If I let my emotions guide my actions, I would probably stay in bed all day eating ice cream and feeling sorry for myself.
I watched an interview years ago that inspired me to lead with actions, not emotions. It was about Jay and Katherine Wolf. Katherine suffered a massive brain stem stroke that led to multiple surgeries and months of rehabilitation. It almost took her life and left her in a wheelchair with half of her face and body paralyzed. Katherine praised her husband for being her caregiver while Jay humbly referred to his wedding vows, “for better or worse.” He explained that caring for her was not just out of love for her, but also love for God.
I sat in awe of this amazing couple. They faced unimaginable circumstances that could have torn them apart, but instead, they allowed God to strengthen them through it. The interviewer asked if they ever argue and if that affects Jay’s attitude as Katherine’s caregiver. Jay smiled and admitted that they argue like any other couple. He talked about a night they had an argument and confessed that he didn’t “feel” like being kind and loving in the midst of their fight, but he did it anyway. “Sometimes you need to act loving to feel loving,” he said wisely.
What I loved most about this couple was their attitude. They didn’t complain about their difficulties, they praised God for allowing her to live. They showed gratitude instead of bitterness. When asked about the difficulties that come with the role of caregiving, Jay spoke about all the caregivers that receive little to no recognition, but then he shifted focus to the patients.
What Jay so beautifully pointed out was that both the caregiver and the patient have challenging roles. It’s no easy task to care for someone else’s needs, but it’s also extremely difficult to rely on someone else to meet all of your needs. Both roles deserve respect.
This interview has stayed with me and inspired me for years. “Sometimes you gotta fake it until you make it,” he said. Our culture may find that insincere, but when it comes to caregiving, this simple advice has been very helpful. When I don’t feel like getting up at 3 am to help my son go to the bathroom, I put on a smile, and I go. My feelings don’t matter when my child needs me, my actions matter. Love requires action, not just words and feelings.
Jay was asked how he continued to show such grace and love during those long months that his wife was in the hospital. His response was simple yet incredibly profound, “I just showed up,” he said, smiling. I just showed up…
There is no possible way to feel patient, kind, and loving every second of the day. Caregiving requires sacrifice. The simplest way to show love is to simply show up, even when you don’t feel like it. Just show up. Show up when they need you and act the way you want to feel. Act kind, act loving, act gentle, and eventually, your feelings will follow suit.
This is an ongoing goal of mine, not just when it comes to caregiving but in all aspects of my life. I want my actions to reflect my love for others. I don’t just want to say I love you, I want to show it. I want my children to feel like a blessing to us, not a responsibility. It is my honor to care for them, and I always want to make sure my actions echo that sentiment. After all, “love is a verb, and without action, it is merely a word.”