“This morning I woke up exhausted. My back was sore from lifting, my eyes were red from lack of sleep, and I had a whole day of parenting and caretaking ahead of me. Some days are like this. Some days, I’m running on fumes and wondering how I’m going to handle this life I’ve been given. I love the role I’ve been blessed with, but it’s still hard. I’m a mom, a wife, a daughter, and a friend. All of those titles bring me joy, but my life is still really, really hard.
I bought a shirt recently that says, ‘Running on Faith.’ I love it for so many reasons. Of course, it’s comfortable, but it’s also a reminder for me to shift my perspective. When I feel like I’m running on empty and I can’t make it one more mile, faith takes over. When I feel like I’m climbing a mountain and all I see is the huge trail ahead of me, faith tells me to just take one more step. Where my strength ends, God’s strength begins. It’s a life-changing way of thinking for me, especially as a Duchenne mom.
It’s not just the physical exhaustion that affects me; it’s often the mental fatigue that feels hardest to bear. It’s the constant ‘what ifs’ that pop into my mind. It’s the conversations we have to have, the thoughts that spiral in my head, and the fears that drain my energy on a daily basis. I’m constantly reminding myself to focus on the present, take one step at a time, and live for the moment. All of those are beautiful sentiments I try desperately to live by, but some days it feels impossible not to spring into the future, especially lately.
Both of my sons just started weekly infusions of a drug the FDA recently approved. We are hopeful this drug will help maintain the strength our boys have left. I’m so grateful there is finally an option for a treatment they are amendable to, but as their mom, it’s been a really hard adjustment. The first week, each of our sons did amazing. After one poke each, their IVs were in, and I felt a tremendous sense of relief… until I sat down, and once again, spiraled into the future. ‘Oh, my goodness,’ I thought. ‘We have to do this every week for the rest of our lives.’ Don’t get me wrong, my head knows it’s a privilege to receive this medicine, but my mama heart just sees needles, pokes, possible surgeries, and pain.
Week two came, and I was mostly worried about my youngest son. He has had past injuries that have caused him to panic in situations involving pain. After the first two pokes were unsuccessful, sure enough, he panicked and began to cry. He refused to try again. It was a hard day, but eventually, he did it. Afterward, I felt helpless and sad instead of relieved, like I should have. I felt sorry for him, and if I’m being honest, I felt sorry for myself.
‘How can we do this every single week?’ I panicked. After stress cleaning, in an attempt to control something I could actually control, I began making arrangements for both boys to get a port. I knew this would make everything easier going forward, but once again, it brought contradictory emotions. Relief and fear followed all at once as I waited to get everything submitted to the surgeon so we could get the boys scheduled. Then came week five of the infusions. My oldest son has contractures in each arm, meaning he cannot fully straighten his arms, so the nurse has to put his IV in his hand. Every week he sits calmly and bravely, and each week has gone smoothly for him – until week five.
After two pokes, he started to feel sick. He turned pale, and his skin got clammy. We let him rest, and I gave him nausea meds and a snack to help level his blood sugar. When he felt better, the nurse tried again, but the vein just wouldn’t cooperate. After five or six pokes, we finally gave up and scheduled him for a different day. As I sat there feeling defeated and sad my sweet boy had just endured so much, I looked over at my son sympathetically. ‘I’m okay, mom,’ he said. He was the one who had just been through it, and yet he was calming me down. As usual, my children never fail to inspire and amaze me.
Thankfully, the nurse came days later and was able to get his infusion started in just one poke. I also got the port consultation scheduled with the surgeon, bringing us one step closer to easier infusion days. I even learned a few tips and tricks for helping my boys’ veins show through more clearly – thanks to my wonderful group of fellow Duchenne moms.
Through all of this, I’ve learned running on fumes is not always a bad thing because it reminds us where our strength truly lies. My strength is not what gets me through hard days. It’s not what keeps me able to lift my boys, get up multiple times a night, or handle difficult medical situations. My strength is limited, and often my anxious mind depletes nearly all the strength I have. I am not strong, but my faith is. I know when I get to the end of my rope, God will be there. One of my favorite scriptures is from 2 Timothy 4:7, ‘I have fought the good fight, I have finished the race, I have kept the faith.’
Our lives are not just random paths we are thrown into; they are divinely and intricately woven together with a purpose. Our lives come with a plan, a purpose, and a beautiful story. Some will never realize that, but it’s true. God created us. I know the race before me is not supposed to be easy, but I also know I’m not supposed to run it alone. So, on the days I wake up already feeling defeated and ready to give up, I will remind myself to keep fighting the good fight. I will keep running on faith until my race is complete.”
This story was submitted to Love What Matters by Christi Cazin of Mama Needs More Coffee. You can follow her journey on Instagram, Facebook, 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 here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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’
‘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’
Do you know someone who could benefit from this story? SHARE this story on Facebook to let others know a community of support is available.