‘It’s not that we don’t feel loved. We don’t feel like anyone really wants to hear about our struggles.’: Special needs mom urges ‘listening is an act of love’

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“We live in a culture of noise. Everyone wants to talk, but it seems like only a few want to actually listen. I’ve learned so much from being a Duchenne parent. Many other Duchenne parents reach out to me, and I know the most helpful thing I can do for them is to simply listen. I don’t tell them how to feel or give them unsolicited advice. I just make sure they don’t feel alone.

The life of a special needs mom can be lonely. We struggle to relate sometimes. We feel left out, misunderstood, and even invisible at times. It’s not that we don’t feel loved; it’s that we don’t feel like anyone really wants to hear about our struggles. But how can we share our ups with you if you don’t hear about the downs too?

Mother takes a selfie with her daughter
Courtesy of Christi Cazin

I saw a quote recently that resonated with me in a powerful way. It read, ‘Listening is an act of love.’ What an amazing way to describe it! Listening is not just hearing words that are spoken. It’s an act of beauty, friendship, and love. It’s an intentional attempt to comfort and empathize with another. Listening is a way to understand what someone else is walking through. Listening is the only way to get to know someone else’s story. Unfortunately, in my world, I’ve noticed how rare it is to find people who listen in such a way.

I have so many supportive family members and close friends that love me and listen in just the right way. I appreciate and love those people more than they will ever know because I also know what it feels like to speak and feel invisible. I know what it feels like to join the conversation trying to relate, only to feel the air in the room slowly dissipate. I know how it feels to have others change the subject as soon as anything Duchenne related enters the conversation. I’m not trying to make anyone sad or uncomfortable, but my life is hard. I’m just trying to share my life and my reality. I’m trying to share my ups and downs just like everyone else.

boy with Duchenne's sits on the couch with his german shepherd
Courtesy of Christi Cazin

I suppose I expect this from strangers who don’t know what to say. Still, l find myself wishing others would put themselves in my shoes for a minute. What should I talk about? I can’t boast of soccer trophies or hiking adventures. I can’t relate with you on many things, so I try to relate the only way I know how, by speaking my own truth. Maybe our latest accomplishment is finishing a difficult homeschool lesson or overcoming the stress of a doctor’s appointment. I may tell you about the drug that was just FDA approved that may help our boys, but I also may mention my fear of the weekly infusions that will be involved. I might tell you something sad, or I may just boast about the latest video game my kids beat.

We are all walking different paths. Maybe your proud parental moment looks different than mine, but they both matter. I understand it can make some people sad when you hear about our struggles, but if you don’t listen to the hard stuff, how can you even begin to understand the joys that follow? My life is an intricate web of both beautiful moments and excruciating ones. If you want to be here for the beautiful ones, you need to be here for the hard ones too.

Courtesy of Christi Cazin

Please don’t misunderstand me; I do not want to be the center of attention. I don’t expect people to hang on to my every word. I just want to feel heard. I just want to relate to the conversation somehow. No one, other than a Duchenne parent, understands quite what it’s like to open up about your day, only to have someone quickly change the subject to something more ‘light.’ It makes you feel invisible, annoying, and insignificant.

I have so many beautiful souls surrounding me, so that is what I focus on, but please understand how much it means to a mom like me just to feel heard. I talk about much more than Duchenne, I promise, but without including that as part of my story, I’m just not me.

Courtesy of Christi Cazin

I feel fortunate to have many people that check on me daily. They are all so important to me. I have one friend who encourages me to take care of myself and another who will bring me a casserole just to make my life a little easier. I have friends that bring random gifts and friends that rearrange their homes when we come over to make things more accessible. My mom listens to my every word with her whole heart somehow. I can almost feel her listening, if that’s even possible.

One friend, in particular, comes to mind when I think of listening as an act. She just has a gift when it comes to listening. Sometimes I’ll joke around with her or talk about homeschool with her. Other times I might tell her that my son fell and how much it scared me. ‘He is fine now and happily playing,’ I’ll add. Then as if to hug me through the phone, she will say, ‘I’m glad he’s okay, but how’s your heart?’ What a way to make someone feel heard, cared for, and loved. If we could all listen like that, this world would be a better place to live.

Listening is truly an act of love, and without it, people like me suffer alone. We hold things in, we push things down, and we end up feeling like we annoy other people. Listening is not just hearing the words said aloud; it’s a loving act of service. It’s a compassionate way of being there for one another. Rick Warren said it this way, ‘You see pain with your eyes, but you sympathize with your ears. Sometimes the greatest way to serve someone is just by listening.’”

Duchenne dad sits at a booth in a restaurant with his two sons with Duchenne's
Courtesy of Christi Cazin

This story was submitted to Love What Matters  by Christi Cazin of Mama Needs More Coffee. You can follow her journey on  InstagramFacebook, YouTube, and her website. You can also purchase her book on Amazon. And you can learn more about Duchenne Muscular Dystrophy hereSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Christi here:

‘One day, you’ll find that to-do list is trivial in comparison. You’ll wish you could go back and rock your baby a bit longer.’: Mom of boys with incurable disease shares letter to younger self

‘Like a tsunami we never saw coming, our boys were diagnosed with Duchenne. I didn’t know how to be a ‘regular’ mom anymore.’: Mom shares ‘surrender’ to reality of sons’ rare disease

‘My faith is solid, but it’s something I fight hard for.’: Mom shares how she remains faithful during ‘life’s roughest storms’

‘Today, I threw myself a little pity party. There were no decorations or balloons, just coffee and lots of tears.’: Mom of boys with rare genetic disease shares how she keeps fighting

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