How my new home will enrich my life with SMA
The thought of having additional space and time with family brings me joy
Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move.
Currently, I have a great setup that accommodates my SMA needs. I have all of the above rooms on my side of the house, where I’ve lived with my mom for 29 years. My medical and adaptive-living technology are integrated seamlessly into my environment so that I can receive the best care while also remaining as independent as possible.
Re-creating this setup in the new house is necessary, but it also requires hard work. Once we finish the project, though, the treasures and benefits I will experience will be beyond measure.
I must remember that the difficulties we’re facing are only temporary.
The new house will allow my mom and me to move in with my sister and her family. This beautiful, multigenerational home has a lot of space that will provide us many years, if not decades, of enjoyment. That’s a lot longer than the four months we’ve spent tackling problems and getting everything ready.
Driving through open home spaces is fun for me
One thing I’ll enjoy about the new house is having lots of extra space to drive my chair. I’ve had a power wheelchair for 37 years and have never gotten tired of driving it around the house. Sometimes I’ll do so for hours.
However, while our current home is all one level, the new house has multiple floors. Last month, I shared that I will have a vertical platform lift (VPL) in the new house. It will act as an elevator, bringing me in my wheelchair from my living space to my mom’s floor directly above me.
My mom’s floor in the new house is so much bigger than the space she’s in now. The family kitchen we’ll all share is bigger than her current kitchen, and her new study will have enough space for me to maneuver my chair. Her current study is really tight, and I struggle to move around freely.
I’ll definitely enjoy driving my chair through the larger rooms on my mom’s floor, as well as my own.
My new space is much more open than my current space. Currently, the doorway between my bedroom and kitchen is wide enough for my wheelchair to pass through, but to create even more space in the new house, there won’t be a doorway at all. The entire space will be wide open, allowing my chair to easily breeze around. My new kitchen will be bigger, too. I’ll share pictures in future columns.
I hope that driving my chair around in the new house will help me feel more at home and thankful that we moved.
My family is my treasure and joy
Sharing a house with my sister’s family will involve new relationship dynamics, but I’ll be grateful to see more of my family every day.
For the past 10 years, my sister’s family has lived only a few minutes away from my mom and me, which has been a blessing. Many families are spread far apart.
My sister and her family will have their own floor in the new house, but I’ll still have a front-row seat as my 7-year-old nephew grows up.
Time spent with my family is my heart’s most prized treasure. These enduring relationships continue to develop and enrich my life, as they’re filled with love and joy.
My love, joy, and faith help me work through any problems I face as I soar through life. To my new house, I’ll see you soon!
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.
About the Author
Julie Scott
Ari! This is great news. We look forward to the pictures once it's finally a done deal. I have been praying (along with many others) for the progress on your "new digs." Your patient expectation will yield a great blessing...at the proper time. It sounds like all of the plans are really good--and it takes time to get everything just right. May the Lord bless and keep you as you're waiting. Shalom, brother!
JOY! Julie