Nights are the hardest for me as a Duchenne mom. The worries, the stress, and the exhaustion seem to catch up to me as soon as my head hits the pillow. I try to gear up for the night ahead, knowing that I will still be needed throughout the night. I feel honored to be a caretaker to my beautiful boys, but that doesn’t take away the exhaustion that it brings. By the end of the night, I feel like my strength is completely depleted, and yet I must get up every time I’m called.
My days sometimes feel like I’m running a marathon. I’m racing around cooking, cleaning, and taking care of my children. I homeschool, work from home and try to keep a handle on everything. I have two boys with Duchenne and a four-year-old daughter. I’m needed constantly throughout the day. I help my four-year-old, but I also help my boys do tasks they can no longer do alone, like sit up, transfer to a chair, get up from the toilet, etc. I’m stretched thin during the day, and that doesn’t stop at night.
During the night, I help my boys get up to go to the bathroom. I settle my four-year-old when she comes in and can’t go back to sleep. I help my younger son when he struggles to sleep or sit up in bed. My sleep is so jumbled that sometimes I’m afraid I’ll fall down on my way to my son’s room for the third time. I’m careful never to make him feel bad for having to wake me up, it’s not his fault, and I’m honored to be a help to him. Still, I don’t get enough sleep, and that can be very wearing on a person.
Some nights as I settle in for bed, I start to panic. My mind heads into the future, and fear sets in until I can barely breathe. If I’m this tired now when I’m mostly only helping one of my sons at night, what will it be like when I’m getting up multiple times with both of my sons? Will I ever get sleep? What will my future look like? This thought pattern usually spirals into a circle of endless worry. I panic until I have tears in my eyes. The image in my head scares me as I picture a future of uncertainty. A picture that only a parent of a child with a degenerative disease could truly understand.
Something extraordinary happens after I hit this point of panic in my thinking. I sit, I wallow, I cry, and then I wipe my tears and stop. I stop and realize that my strength is depleted, but that is only temporary. My strength is only meant to carry me through one day at a time. God gives me only enough strength for the day, only enough energy for the task in front of me and only enough courage for the present. He doesn’t give me strength for the future because I’m not there yet.
There is a Bible verse that I cling to in these moments. God tells us that His power is made perfect in our weakness. That means that my weakness is not a fault or a deficiency on my part, it’s a human characteristic. It’s an opportunity to allow God’s power to fill in where I fall short. When I finally stop my cycle of worry, I come to the realization that my strength will come as I need it, not before. That allows me to take a deep breath, focus only on the day in front of me, and carry on with faith.
I think a lot of moms do this. Whether you are a special needs parent or not, you deal with parental stress. Your mind takes you into the future, and you wonder how you will make it through all the hardships that may lie ahead. You worry about your child’s future because that’s what parents do, but the worry doesn’t change anything, does it? We are only given enough strength for the day, and it’s time we learn to utilize it properly.
Every day I remind myself that I only have enough strength for today, not tomorrow, not next week – just enough for today. When my boys were first diagnosed, a lot of people would tell me to “take it one day at a time,” but that didn’t stop me from crying or fearing the future. Still, it did help me remember the importance of strategically using my strength for the day ahead of me. I may still have fears and worries about what’s to come, but when I panic about it, I end up using some of the strength for the day that I need to keep going. I end up wasting valuable strength on useless thoughts of worry, self-pity, and fear.
What if we looked at our strength like an envelope full of money, but there’s only enough in it for today. Would we spend it all on useless things, or would we use it wisely for things that we need? Would we spend it all first thing in the morning, or would we spread it out throughout the day so that we don’t run out? I have come to realize that sometimes I use my strength for things that don’t matter, we all do, but my children rely on me. Just like I rely on God for my strength, my children rely on my strength. I must use my strength wisely so that I have enough to get through the day.
I used to lay in bed and worry that I wouldn’t have enough energy to get through the night or even the next day. Sometimes I still do, but then I remember that my strength is only meant for the day. I take comfort when I remember that tomorrow is another day. Tomorrow I will get up and rise with new strength, new energy, and a brand new start. I will wake up with enough strength for the day, and that is all I need. One of my favorite quotes comes to mind as I settle in for bed each night. Mary Ann Radmacher said, “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day whispering, ‘I will try again tomorrow.’”