When the New Normal Registers
My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the claim.
With the mail in hand and my curiosity kindled, I crossed the road back to our house.
Once inside, I opened the envelope, staring at a check my mother had looked so forward to me (and my brother) receiving when she wasn’t here anymore.
Before I could breathe a sigh of relief that the efforts to satisfy the insurance company’s requests had been successful, the tears poured out, picking up steam at breakneck speed.
Mom had been gone two months that day, and all that time, I’d kept myself too busy to focus much on our family’s substantial loss. Besides, I feel her presence strongly, can easily imagine her beaming, and am blessed with signs regularly. Consequently, it’s been almost easy at times to pretend I’d either visited with her in her apartment down the road or chatted by phone or email.
Mom sent an incredible sign the morning after she snagged her wings. It’s been impossible not to feel overjoyed that she was free from her miserable vision woes, dwindling hearing, and more.
Because I wouldn’t have been holding the check with Mom here, it served as a stark realization that she was gone. I couldn’t ignore it — the evidence lay in my hands. Thank goodness it wasn’t necessary for me to talk, because nothing I uttered would have been coherent.
I mentioned recently that Mom’s death hadn’t fully registered. It fully registered that day and the next, until I deposited the check. Out of sight …
The move up the mountain from our last house to our current one was memorable, to say the least. The decision to move was a no-brainer for several reasons: escaping profuse pollution from furniture factories, being closer to my parents and their innkeeper duties at the family’s new lodge on the Blue Ridge Parkway in North Carolina, and basking in a simpler life in the middle of God’s country.
Until further notice, the plan was for my husband, Randy, to remain in our “civilized” house during the week. He’d be close to his coaching job, and at night, he could prepare the house for selling.
One week after our arrival, just as Randy pulled into the driveway for the weekend, a major blizzard hit. We were totally unprepared, but it was still exciting — for a time. Miraculously, we didn’t freeze to death in our drafty old farmhouse. Even more miraculously, the two squirrels flying out of the wall didn’t scare us to death.
It registered rather quickly that routine city life, which already seemed almost boring, was a thing of the past.
Our next big surprise, a positive pregnancy test, threw us for a loop less than a year after our move. The nurse squealed, “It’s really positive!” I was afraid to ask what that meant, as even a “sorta” positive would have been a sufficient shock. No matter, our beautiful little surprise arrived May 18.
With his plentiful dark hair, Jeffrey looked almost identical to our other children, Matthew and Katie. He was a quiet, easygoing baby, and although he didn’t nurse as heartily as his siblings, he seemed content.
Jeffrey also exhibited abdominal breathing, which had bothered no one after the delivery but his daddy.
Randy, increasingly worried about Jeffrey’s breathing after eight weeks, asked Paul, my physician brother, to take a look at him during an afternoon visit.
The somber look on Paul’s face was anything but encouraging, although he tried his best not to terrify us. His brief exam of his tiny nephew yielded alarming findings: dull-sounding lungs and no reflexes.
Fast forwarding a surreal 28 hours later, a pediatric neurologist at Brenner Children’s Hospital examined Jeffrey and shared the probable diagnosis of spinal muscular atrophy (SMA) type 1, also known as Werdnig-Hoffmann disease. Upon completion of the testing to confirm his suspicions, we learned we likely wouldn’t have our baby long.
Being an optimist comes in handy — most of the time. Because we were hurled at once into the world of a devastating progressive disease killing our baby and the equally mind-boggling internet in a quest to save him, I didn’t have time to dwell on the probability that Jeffrey wouldn’t grow up with us. His easy demeanor fortified my optimism.
On the day that Jeffrey’s weakening swallowing muscles warranted the suction machine for the first time, however, my role shifted naturally from mama to nurse. And our new reality registered. Completely.
It may have taken a blizzard, flying squirrels, a suction machine, and a piece of mail for our new normal to register.
Whatever it takes.
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.