I am encouraged that more people are getting to know the real me

I bravely soar to meet the challenges of SMA with determination and a can-do attitude. But despite my positivity, certain things get me down sometimes.

I feel discouraged whenever I think about how only the few people closest to me know who I truly am on the inside. I have a lot to share with others, but not everybody realizes that. Some just see the technology that keeps me alive and functional.

My mom and my nurses build me up and prioritize bonding with me, which I will discuss in a moment.

Others give me positive reinforcements as well, including my readers. Many of you have left encouraging comments on my columns, and I can feel your love and sense that you are getting to know the real me. I thank you with all of my heart.

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Encouragement from a special nurse and my mom

Recently, one of my nurses let me know that she values me in a huge way. In August, she began working with me on Monday nights. During one of her first shifts, she said, “I’m happy to be here!” She’s often said she missed me after not seeing me for a few days.

Here’s a tip for all home healthcare nurses, aides, and other caregivers: Saying that you’re glad to be at a person’s home is a great way to win your patients and their families over.

My mom and I knew that this nurse’s contract with her other job at the hospital was ending in November. In September, we asked if she would join my nursing staff full time once her contract ended. She said she’d think about it.

By early October, she’d decided that she would work with me full time. I can’t tell you how special her decision made me feel. She could have stayed with the hospital, but the fact that she wants to work more hours with me says that I’m a priority for her. This makes me feel valued as a person.

Her decision is worth several “canteens of generosity,” not just one, as it benefits me in a significant way. I now have two full-time night nurses, who each work three nights a week, as well as a part-time night nurse, who works one night a week. I also have three day nurses.

Things can always change quickly, as nurses may decide to decrease their hours or leave to work elsewhere. For the moment, at least, I don’t have to worry about my nursing agency finding more night nurses for me. This is a huge relief because it’s something I’d worried about for years.

It’s important to note that my nights have always been covered. However, many times they were covered by my day nurses or other nurses trained on my case but just pitching in temporarily.

I’m glad my mom has mastered the art of encouragement. Recently, there was a night when I felt really discouraged because I felt the real me was going unnoticed. My mom helped me redirect my focus by giving me something fun to look forward to. I will discuss that in a future column.

My mom’s encouragement didn’t get rid of all of my negative thoughts, but it pushed enough aside to make room for some positive thoughts.

A dream coming true

A lot of encouraging things are happening. It was almost a year ago, on Nov. 30, 2023, that I rejected the idea that I’d never have enough nurses. I believed that one day I would have the eight to 10 nurses needed to complete my staff. My nursing agency wouldn’t need to keep looking for others.

It took a lot of faith for me to make this claim, but I’m closer than I’ve been in years to having my dream come true. In addition to my new night nurse, a new weekend day nurse is almost finished training on my case. That would nearly complete my nursing staff.

Now that the renovation of my new home is hopefully almost complete, and I have more nurses coming on board, plenty of dreams are coming true. This gives me hope that my dream of more people knowing the real me will also come true. I’m ready to soar when this happens!

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.