On my birthday, I reflect on the miracles that have met my needs
On Sunday, I climbed another mountain, and I’m giving a prayer of thanks and saying, “Hip, hip, hooray!” Why? Because I had my 42nd birthday on July 7.
It’s a high moment for me because I’m now 40 years beyond the life expectancy I was given as a baby with SMA. I was diagnosed in the early 1980s, when there were none of the drug therapies for SMA we have now. I was expected to live till age 2.
That prognosis left me in a tough bind, but I’ve been getting out of tough binds my whole life. Each time the bind loosens, it’s like I’m unwrapping a gift that contains miracles. Over time, each one of those miracles has grown and multiplied to meet all my needs.
Throughout my life, I’ve been in situations where either I’ve had a severe respiratory infection or life-supporting equipment wouldn’t work at a critical time. People, including me, have sometimes thought I might have only a few minutes or hours to live. I believe that through God and the determination of myself and others, those minutes and hours have miraculously multiplied into years and decades.
Miracles in advocacy
I can see another example of how my miracles have multiplied by looking at my years as an advocate in the North Carolina General Assembly (our legislature), fighting for my Medicaid program called private duty nursing (PDN).
At times I’ve felt dismayed when advocating. I now know this feeling is natural from time to time, but it doesn’t make the emotions any easier. There were times, especially when I was 19 and 20, when I felt so disappointed about how our advocacy was going that it felt like my mom and I were fighting alone. That was hard.
I don’t blame either political party for making me feel this way. Both Democrats and Republicans can learn more about the importance of private duty nursing. Nonetheless, legislators from both parties have rescued me many times through the years by not decreasing PDN services. Having legislators who can fight with you for your cause is a miracle in itself and a critical piece of the healthcare puzzle.
Still, PDN is a complex program. To protect it fully, my mom and I had to seek support from state and county Medicaid officials, as well.
Our miraculous allies have multiplied as we’ve formed long-lasting relationships with Medicaid officials. They’ve helped us stay on top of any technicalities that might endanger my nursing, making sure my paperwork is in order multiple times. Many watchful eyes are needed to ensure my Medicaid records are complete. The alternative could mean disaster, preventing me from receiving life-saving nursing care.
It takes teamwork from everyone — state legislators, state and county Medicaid officials, my nursing agency, and my mom and me — to check and recheck that every detail is in place. It’s a constant, ongoing process that keeps me safe. It gives me hope that the people who can help me with all this work have miraculously multiplied into a wide-ranging team.
Miracles in my living space
Ari Anderson in his kitchen today, where his nurses prepare his tube feedings. The room is separate from his mother’s kitchen, which is on her side of the house. (Courtesy of Ari Anderson)
Miracles have multiplied in my living spaces as well. When I was a child, we lived in a tiny apartment. I had my own bedroom and bathroom, which was great, but it wasn’t enough to respect everyone’s privacy.
My nurses needed to prepare my tube feedings in my family’s kitchen, for instance. From there, they could see and hear everything that my family was doing in the living room.
My mom had bigger dreams. In 1995, when I was 13, we had our own house built, and the garage became my living space. My former bedroom and bathroom miraculously multiplied, giving me my own kitchen and medical supplies room — all separate from my mom’s living space in the same house.
Over time, my rooms multiplied even more when we added an extra medical supplies space, built within the existing one. It’s been amazing to see how God turned my small apartment’s bedroom into one entire side of our house.
Ari Anderson sits in front of one of his medical supply spaces, built inside the one that already existed — complete with sliding barn doors. (Courtesy of Ari Anderson)
When I say that getting out of tough binds is like unwrapping presents, I’m saying that a bad situation can miraculously turn into a good one. These blessings can multiply into things you never expected. Seeing and talking about these things helps my faith to 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.
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