I look forward to creating many special memories in my new home

Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t have otherwise had. I consider that a blessing.

SMA has taught me to treasure my memories deeply and never forget the friendships I’ve made.

My mom asked me recently, “You value your friendships a lot, don’t you?” I absolutely do.

My friends could have seen only my wheelchair and tracheostomy, and walked away. Instead, they decided to share life experiences with me. My subconscious regularly reminds the conscious part of my mind of the lasting impact these people have had on my life. My memories are pushed to the forefront and come alive for me day and night.

For example, I often dream about a dear friend of the family, who was like a grandma to me. She accepted me so completely, never once intimidated by my physical and medical challenges. She always called me “her boy.” We had wonderful times together. She passed away four years ago, but I dream about her so often, it’s as if she still visits me. I’m so thankful for this.

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My home of memories

I attended grade school, high school, and college in person, so I have many memories of school and other special places, but the memories that are closest to my heart took place at my home of 30 years. Those moments continue to teach me a lot about myself, giving extra meaning to the saying, “If these walls could talk.”

My home of three decades is where I had deep conversations with friends, where I missed them when they passed away, moved out of town, or took another job. It’s also where I dreamed about what I would accomplish in the future and where my spirits were lifted because I’d accomplished some of those things. It’s where I faced many challenges, but saw many of those weights lifted through hard work and from what I believe to be answers to prayers.

My home is where I would became frustrated by life events only to see miracles happen that would ease my frustrations. It’s where people showed me great acts of generosity, allowing me to keep reaching for my goals.

My home of 30 years is where my mom, my nurses, and I worked so hard to keep my lungs clear day in and day out. It’s where I first learned to use technology that would increase my independence to levels unimaginable just years before.

It’s where I studied hard so I could ace my tests. Long days in my living space were spent creating a number of multimedia advocacy videos for Medicaid programs like private duty nursing. Oh, the joy I got from trying to make each video presentation more impressive and professional than the last.

Memories still to come

Finally, my home is where my family and I have shared love. That brings me to another special window of memories.

I wrote last September that I would soon be moving into a new house, and I’m excited to announce that I finally did so on Feb. 26. We began renovations last July to convert the garage into my own bedroom, bathroom, kitchen, and medical supply room, and the work was finally completed in February.

The garage in my old house was converted into these same rooms 30 years ago, but as I will write about soon, almost everything about my new rooms far surpasses the old ones. The new space has fewer walls, making it more open and allowing more technology to be integrated into it. This gives me fantastic levels of independence.

For these things I’m extremely excited and grateful. However, there is one thing my new living space doesn’t have yet: memories.

But, as I said above, the love of family will help to create new memories that are even more precious. The day that I moved into the new house, my sister was there to greet me and said, “Welcome to your new home.” My mom and I have always lived together, but now we are living with my sister and her family. All of us living together will give me and my mom special memories that we couldn’t have had in our old home.

Living in a house full of love will inspire me to write more memorable stories that will help us all soar!

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.