‘How can I be an advocate one day and a sobbing mess the next? The ups and downs were exhausting.’: Mom of boys with rare degenerative disease says ‘it’s OK to not be OK all the time’

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“I am one of those people that wears their heart on their sleeve. My emotions are impossible to hide. I’m that person who just can’t fake a smile no matter how hard I try. My feelings are usually written all over my face. Those closest to me can immediately tell if I’m upset with one glance. I don’t mind being a vulnerable person, and I believe bearing my soul can actually help others. It’s a privilege and a chance to show others showing emotion is not a bad thing. Seeking help or comfort is nothing to be ashamed of, and that ‘it’s okay to not be okay’ all the time.

As a Duchenne mom, this vulnerability I possess has given me a heart for advocacy. I try to use it to comfort other parents in the same position. I try to speak honestly so other parents dealing with something similar won’t feel so alone. I try to be an encouragement, but sometimes I just can’t find the words.

While that open book mentality is my usual mood, sometimes I notice the words just don’t come. Maybe it’s caused by depression, or maybe it’s just how I deal with the roller coaster of emotions that come with being a Duchenne parent, but some days I just want to shut out the world and pull the covers over my head. I want to hide and keep my emotions concealed.

Duchenne mom smiles widely for the camera
Courtesy of Christi Cazin

Most days, I love talking about all aspects of Duchenne because that’s what I know. I like answering questions about our journey with research, behavior, medications, clinical trials, and so on. But sometimes, I notice this switch flip inside of me, and I suddenly shut down. I get quiet, I feel sorry for myself, and I withdraw from the world around me.

I used to think something was wrong with me for having these days of ups and downs. How can I be an advocate one day and a sobbing mess the next? The ups and downs were exhausting, and the mood swings were draining. I wanted to be strong and show courage, not stay in bed and wallow, but I’ve since realized both moods lead to the same outcome. Both make me stronger in the long run, and both are important elements of grieving.

A diagnosis of Duchenne means constantly grieving. You grieve the losses of strength. You grieve the changes that are always taking place, and you grieve the life you expected to have before the disease showed up and stole a part of your soul. Grief just becomes part of life when you have a child with a degenerative disease. Watching your child suffer just changes you in ways no one else can truly understand unless they’ve walked this path.

Brothers with Duchenne sit next to sister for sibling picture.
Courtesy of Christi Cazin

I’ve since realized this pattern of ups and downs is nothing to be ashamed of; it’s simply my way of dealing with life. I love my life, and I have so many things to be grateful for, but I’d be lying if I said I was able to choose joy every second of the day. Don’t get me wrong, I try, but I’m human, and sometimes I find myself giving in to the pain instead. I hate when I’m in that gloomy place, but I’ve learned the important thing is what happens next. When the dark clouds drift away, and I see bright sunshine again, I feel stronger, braver, and ready to be my positive yet vulnerable self again. God uses those times to strengthen me; I simply need to hold on.

So, if you’re like me and sometimes you just can’t find the words to say, or you simply have days where you need to shut out the world, be encouraged that you are not alone. Our lives can feel isolating, exhausting, lonely, and misunderstood. We are allowed to power down and be still sometimes. Those days can actually let out deep emotions we’ve pushed down, emotions that need to come out. After a good cry, a restful day, and a whole lot of grace, you’ll feel lighter and ready to face life again.

I used to think it made me weak to fall apart sometimes, but now I know it’s actually the opposite. It’s only through the hard days I get stronger. It’s only after those long, painful sobs that my tears turn to courage. It’s only after I wallow in the valley of sorrow I’m able to find the strength to climb back up that mountain and choose joy again. So, when you can’t find the words, be still and wait for those tears to do their job. Let them cleanse you, let them change you, and let them strengthen you.”

Duchenne mom takes picture wearing black "Running On Faith" tank top.
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

‘There’s nothing we can play with.’ They solemnly looked around the backyard.’: Mom of boys with Duchenne Muscular Dystrophy shares how their resiliency turned ‘pity to praise’

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

‘There’s so much I wish others knew. So many incorrect assumptions make life even harder for someone like me.’: Special needs mom clears up biggest misconceptions

‘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

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