‘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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“Some days, I feel strong and brave.

Some days, I feel a sense of accomplishment with each checkmark I make on my endless to do list. I move from one task to another with motivation. I feel honored to be a mother, a wife, a writer, and a homeschool mom. I wouldn’t trade my role for all the money in the world. I love my life, but some days, I feel like the weight of the world is crushing me.

Sometimes the stress, the pain, and the emotional parts of my life take over and it’s all I can see.

My faith is solid.

My soul, however, is weak. There are no words to describe what it feels like to watch your children weaken over time. It’s truly heartbreaking to watch them suffer with a disease like Duchenne.

two young boys with Duchenne's stand with their sister and smile towards the camera
Courtesy of Christi Cazin

Every day, I watch it steal abilities away from them. They rely on me and my husband to meet all of their needs. They get frustrated with their bodies and I can’t fix it. It kills me that I can’t fix it.

I trust in God’s plan for us. I truly believe suffering is a part of something beautiful. Something we won’t understand until Heaven. I’ve surrendered my life to God, but I still struggle to surrender my pain to Him like I should. My life is bittersweet. I have happy children who love life. I have a loving husband who adores me. I have family and friends that I love. I’m so blessed, but I’m also drowning in a sea of suffering. The weight of it feels like it’s all on my shoulders.

young boy with Duchenne's rests his forehead against his sisters, their faces are close to each other
Courtesy of Christi Cazin

My boys are in a race against time for a cure, a treatment, or a fate I can’t even say aloud without collapsing to the floor. My mind races with thoughts of joy and sorrow all at once. Depression and anxiety visit me daily, and yet God never leaves me. He stays and reminds me to keep fighting.

Today, the pain got the best of me.

Today, I threw myself a little pity party. There were no decorations or balloons, just coffee and lots of tears. I have days like that. Days where I punch my pillow and beg for different circumstances. I scream, I cry, and then I drop to my knees in prayer.

parents pose with their three children, one daughter and two sons with Duchenne's
Courtesy of Christi Cazin

Then I wipe my tears and get back up. I remind myself tomorrow is another day, and another opportunity to choose joy.

‘Tomorrow I will be brave again,’ I tell myself. Tomorrow I will focus on one thing at a time, instead of letting it all pile up on my shoulders. I will laugh with my children, kiss my husband, and tell all my loved ones how much I love them. I will feel better tomorrow, I just need to hold on.

young boy with Duchenne's poses in front of camera with hands together, smiling.
Courtesy of Christi Cazin

Today my dear friend sent me a message at the perfect time. God used her to help me more than she may have realized. She sent me this: ‘He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.’ -Isaiah 40:29-31 NIV

It’s not mine to carry.

The weight of the world is heavy, but it’s not mine to carry. Even when it feels like it may crush me, it won’t, because it doesn’t belong to me. The pain, the fear, and all of my brokenness belongs at the feet of my Savior. He will hold it for me. So today, I will place it all in His hands and pray tomorrow my strength will be renewed.

Tomorrow I will be strong again.”

two boys with Duchenne's sit on both sides of their sister, the three children are laughing
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 here. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Christi here:

‘How can we do this every single week?’ My mama heart just sees needles, pokes, possible surgeries, and pain.’: Duchenne mom shares beauty of ‘running on faith’

‘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’

Read more about Duchenne Muscular Dystrophy here:

‘I was giving my son a bath when I noticed 3 little pubic hairs. I got an ominous call from our pediatrician at 6:30 in the evening.’: Mom works to cure son’s Duchenne Muscular Dystrophy, ‘Where there is life, there is hope’

‘Well, it looks like you have a Duchenne boy.’ My stomach dropped. The more I read, the more I started to become numb.’: Mom shares journey of son with Duchenne’s Muscular Dystrophy

‘I’m lying on the ground crying. ‘I can’t bear this.’ His life will be over before it really begins.’: Mom advocates for son’s terminal illness, Duchenne’s Muscular Dystrophy, ‘Strength is more than muscle’

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