The Time I Would Have Given Back

It’s daylight saving time and we have given back the extra hour we snagged in the fall. I don’t like giving time back. Usually.

Ahhh … time.

It’s a given that when you’re having fun, time whizzes by. My six weeks studying in Europe after high school? Zoom, zoom. Almost 50 years of marriage? Blur. The delivery of our daughter, Katie? Well, OK, that really was fast — 10 minutes after I waddled into the exam room, to be exact. Our babies are grown with families of their own? Whoosh. Medicare? Mere blink.

When you’re not having fun, however, time moves like molasses in a blizzard.

***

I was teaching during my pregnancies with Katie and our son Matthew. During our third pregnancy, I helped my folks run the family lodge, tended to Matthew and Katie’s needs, and dealt with a stressful school situation for my husband, Randy.

The first two months with baby Jeffrey flashed by. Life resembled a circus, but it was good.

That changed on the afternoon of July 13, 1997. Randy, concerned with Jeffrey’s abdominal breathing since delivery, had asked Paul, my physician brother, to examine him. The bizarre fog I’d experienced during and after the pregnancy dissipated without warning, leaving my head and heart pounding.

One look at Paul’s face after he checked Jeffrey and time became molasses in a blizzard.

Paul explained that Jeffrey likely would be referred to a neurologist to determine the cause of his dull-sounding lung and total absence of reflexes.

Had it not been for the invaluable experiences during my days teaching at Brockman School, I likely would have fainted.

***

After the whammy of Jeffrey’s diagnosis of spinal muscular atrophy (SMA) by a pediatric neurologist, we boarded a roller coaster for a hang-on-by-the-seat-of-your-pants adventure. With no hope offered by the medical profession, Randy and I wasted no time searching nooks and crannies for alternative regimens that might halt SMA’s deadly progression. Schedules for experimental essential oils and supplements, appointments with chiropractors, and more were scribbled down. Combined with the schedules for Matthew’s and Katie’s school projects and extracurricular activities, and Randy’s schedule for a new business, it was a whirlwind.

The documentation frenzy kept me hopping, but it paled in comparison to what was coming.

***

Once suctioning became a necessity for our sweet little guy, schedules were tossed. Since Jeffrey was too young to tell me when he needed to be suctioned, I was constantly on the alert for indications. Some days the suctioning need seemed constant, other days the routine seemed almost normal — whatever that was. My mind and I ran circles day and night.

Not long after hospice was summoned, Jeffrey needed what our assigned nurse, Mary, dubbed the miracle drug: morphine. Sickened at the thought that I would have to give our beautiful baby such a powerful substance, I was thankfully and promptly relieved to see how it worked on him. If fatigue accompanied his respiratory distress, morphine enabled him to sleep; if he was in respiratory distress, it relaxed him. It really was a miracle drug!

Until it wasn’t.

***

I kept a rigid chart of the morphine schedule, as I didn’t want to give Jeffrey too much or wait too long. However, the end of daylight saving time complicated the already dizzying schedule beyond my comprehension and would have pushed me over a ledge if I’d had one.

A few notes from Nov. 4, 1997:

5:50 p.m. — morphine and suctioning

6:45 p.m. — morphine and suctioning

6:55 p.m. — ditto

7:05 p.m. — ditto

7:15 p.m. — ditto

7:20 p.m. — ditto

7:25 p.m. — ditto

7:35 p.m. — more morphine (per Mary). Not doing its job.

7:45 p.m. — morphine

8 p.m. — ditto

8:10 p.m. — increased morphine (per Mary)

8:25 p.m. — ditto

8:40 p.m. — ditto

9 p.m. — more morphine

Each grueling minute spent waiting for the next dose or any hint of relief seemed an hour long.

The following is an excerpt from “The Jeffrey Journey,” my book about our SMA assignment:

By this dose, I was freakishly calm. It had been thirteen hours since I had been out of the chair. Jeffrey’s body felt cooler to the touch, and Randy turned the ceiling fan off.

9:25 p.m. — more morphine

9:45 p.m. — more morphine. Jeffrey was saturated with morphine, and still he fought the urge to close his eyes … possibly forever. I needed to stretch my body, but I was afraid I would collapse on my wobbly legs. I was also afraid to move Jeffrey even if I thought I could move for fear of adding to his apparent distress, and I was certainly afraid to leave him, even for a period of seconds.    

I was afraid to blink.

***

At 10:43 that night, Jeffrey took his last breath.

That’s one time I would have given back.

***

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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.