Special People Enter Our Lives at Unexpected Moments

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by Ari Anderson |

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sma technology | SMA News Today | Main graphic for "Soaring With Hope," a column by Ari Anderson

We all experience moments that change our destiny. For me, it might have been learning whether I had passed a major college exam. For others, it might be the moment their partner responds to a marriage proposal.

We often anticipate this type of life-changing moment. But what about unexpected moments? Of course, there are the terrible examples, such as the sudden injury or death of a loved one. I pray you never have to go through that. But today, I want to talk about an unexpected event that changed my life for the better.

At the beginning of sixth grade, I had a day nurse whom I hardly remember. She didn’t work with me for very long, as we just didn’t click. One day at school, she was scheduled to train a new nurse. I’ll never forget the unusual way her replacement entered my life.

Just as the new nurse was arriving, a dried mucus plug started to clog my tracheostomy, which functions as my airway. I needed my trach changed before it became a full-blown emergency. This is not an uncommon task for a private duty nurse. However, the nurse who was supposed to be doing the training admitted that she had never changed a trach before!

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In a reversal of roles, the trainee showed her trainer how to do it. (Today, I never have a nurse work alone with me if they haven’t changed my trach during training.)

Not only did the new nurse save my life, but she also gave me another incredible gift: Over the next two years that she worked with me, she gave me a piece of my childhood back.

Until that point, my young life had consisted of drawn-out respiratory infections and very serious medical workers. I even had to experience the pain of my peers losing interest in me. I may have been a child, but a part of me had forgotten how to be one.

My new nurse helped me to remember that I was a child. She allowed me to be myself and act silly. In turn, she dropped the serious act and acted silly right alongside me. We played make-believe games where we pretended to be different characters, and almost every day was filled with fun.

Of course, I still had my educational responsibilities, but schoolwork is part of being a kid, too.

Besides all the fun, this nurse provided me with stability. She worked 12-hour shifts, five days a week. Anyone with experience in home care knows that you practically have to be a superhero to work that many hours. Most only work two or three shifts a week because it’s such a tough job. Somehow, my nurse managed.

After spending so much time with her, I grew very comfortable with her skills and ability to protect me. Not only did she save my life when we first met, she also saved me again a year later. One day at school, I threw up into my lungs, or aspirated, which halted my breathing. My nurse secured my airway quickly and had me stabilized by the time the ambulance arrived.

Who can beat someone who knows how to have fun and acts quickly in an emergency?

Alas, nobody can stay in our lives forever. After two years, my special nurse moved to Texas for family reasons. It was a tearful goodbye.

Don’t feel too bad for me, though. The nurse’s arrival in my life created a ripple effect that changed my destiny. She gave me the hope and will to fight for a more normal life, no matter how tough the obstacles.

While it was a tearful goodbye, when she left, she promised to come back for my high school graduation. Five years later, she kept her promise, and we continue to be friends.

May you have the same kind of unexpected moments. Be on the lookout for people who can brighten your outlook, as you never know when they might appear. This makes our lives more exciting!


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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