Counting my blessings during a crisis allows me to weather the storm
A columnist is relieved after resolving a shortage of home care nurses
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When my great-aunt was 100, she used to sing a song that said “count your many blessings.” As I approach another birthday and complete another year on my journey with SMA, I’m counting my blessings one by one.
I’ve had plenty of crises — or as I call them, storms — over the past year. Yet, I’ve had just as many blessings. They’re like flowers that provide hope and renew my faith. It’s surprising how these flowers of hope can spring up in the middle of the worst storms.
In my previous column, I explained that my mom recently had to cover more nighttime hours than ever before of caregiving for me because we didn’t have enough nurses. The sleep deprivation was draining her.
Thankfully, she had the strength, stamina, and health to shield her body, which prevented it from being harder on her than it could’ve been. That in itself is a blessing.
Having to cover a lot of nights due to being short-staffed with nurses has been a severe storm for my mom. However, the gale-force winds are dying down, and the sun is starting to poke through the clouds.
My mom also had surgery a couple weeks ago. As a result, she couldn’t perform several tasks involving my care for two weeks. So my state’s Medicaid program granted me 24 hours a day of nursing care during those two weeks.
For most of my life, my nursing coverage has been great, with most of my hours staffed. However, the few weeks leading up to my mom’s surgery were bad in terms of coverage. I worried about how I’d get 24/7 nursing care while my mom was recovering.
I didn’t exactly get 24/7 care, but I’m happy to say that it was pretty close. What a blessing! As I write this, the two weeks are almost over, and it’s been wonderful. My mom was able to go home the same day as her surgery. Since then, she’s been able to catch up on her sleep since most of my hours were covered. That’s been so nice to see.
One factor that led to this success was that a night nurse picked up an extra shift each week. He started with one night a week and now has two. This will be ongoing.
This tells me not to be discouraged when I find a nurse or other caregiver that I really like but they can’t work as many hours as I’d hoped. Sometimes, if I give that person a chance to get their foot in the door, it might work out later. That’s happened with multiple nurses charged with my care over the years.
The success of the past two weeks tells me that if all of my shifts were covered during this period, then we should be able to continue. It won’t be 24/7 care, but the coverage can still be excellent. I have faith it will happen, and I will continue to be blessed in this way.
More blessings following a medical crisis
I had another stormy event in January that I haven’t written about yet. I think it shows how another blessing got me through a different storm.
The day started out as a quiet, typical Sunday morning that turned extremely atypical fast. Without being too graphic, the place where urine is supposed to exit the body looked like it had feces coming out instead.
This is a very dangerous situation. It’s a sign that there is an abnormal pathway occurring between the bowel and the bladder, something called a bladder fistula. This condition requires surgery.
I was taken to the emergency department at the hospital and had a CT scan. It was a scary day as we waited for the results. Thankfully, all the results came back normal that evening. I was so blessed to be able to go home at the end of that day without needing surgery. I’ve been even more blessed because I’ve been urinating normally ever since. We don’t know why that single incident happened.
Again, blessings are like flowers of hope. The next time I’m in a stormy crisis, I’ll try to stop and count my blessings. This will help me soar through the storm!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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