Home l Excerpts l Special Dedication l Reviews l Dreams for Jeffrey (CD) l SMA l About Us l Contact/Order l SMA Families/Blog
The Jeffrey Journey
by Helen Baldwin
GO HERE FOR ORDERING INFO!!!
Excerpts
Foreword
In a lifetime, a person crosses paths with hundreds, maybe thousands, of people. The relationships that ensue may last years, or may last only minutes. If one is lucky, a friendship will be born that will survive the test of time.
I guess I drew the long straw.
My friendship with Helen began out of desperation, the kind that comes only from the heart. Our boys, our babies, were fighting an insidious monster called Spinal Muscular Atrophy... Helen’s Jeffrey, whose case was more severe and faster-acting, and my Kevin, who continues his daily battle. We clicked instantly, through the miracle of the Internet, and forged a bond that has carried us through the deepest sorrows and the greatest joys that life has to offer. By the time we finally met in person, we had already seen into the depths of each other’s souls.
For those of us who have been unwittingly propelled into the world of disabilities - the world where children die - normalcy requires a new definition. Through her writing, Helen allows a rare and incredible glimpse into a normal family thrown into the most abnormal situation of them all.
Helen’s poignant memories of Jeffrey, and her ability to so vividly transpose those thoughts onto paper, paint a realistic - and often painful - picture of what it’s like for a mother to help her child live and then to make the decision to help him die.
Though she calls it The Jeffrey Journey, this book is more than a chronicle of the short life of a precious child. It is the journey of a family faced with a challenge that from the outset seems unconquerable. Helen takes us along as her family meets life’s cruelest curves... and survives.
Thankfully, their journey has not yet ended.Cindy Schaefer
Chapter Two
I found a doctor advertising baby delivery services and handed over the urine specimen before returning to the waiting room in shock, trying to absorb what I already knew was the reason for my sitting there... and for my mental paralysis.
A baby. At my age? After over 22 years of marriage? How did that happen? I knew how that usually happened, but I didn’t know how it could have happened to us at that particular time. Osmosis, perhaps, from from standing too close to Katie’s pregnant teacher? That frog water we drank for two days? Too much clean mountain air? The flying squirrels? Heavens.
What in the world were we going to do with a new baby? Without maternity benefits, money, or room at the inn, a stable might look pretty good by the time we had to clear out a spot for this unexpected little bundle. And my lard supply was already substantial. Wherever would I put on the apparently mandatory fifty pounds I’d so easily amassed with each of the other two pregnancies? The image was ripe for a horror movie.
The shock was giving way to a plethora of emotions and considerations when I was called back to the lab. Not only was the lab result positive, said the cheery, unpregnant technician, it was positive fast, whatever that meant. I didn’t think I wanted to know.
Reeling, I sat in the chair for the initial blood donation, while the nurse asked which doctor I wanted to see. I wanted to see no doctor. I wanted to find myself waking up from what was surely nothing more than the ultimate middle-age nightmare.
And yet, there was the beginning of an inner rumbling I attributed to possible excitement. It was probably an upset stomach due to nerves and sheer disbelief and maybe even a touch of morning sickness. As Katie often said, though, What’s the difference?
We were going to have a baby.
Chapter Twelve (excerpt)
.... It suddenly dawned on me that Jeffrey, just over six weeks old, was seriously lagging in achievements of such physical milestones as holding his head up. Matthew had actually scooted at six weeks, and while I knew that had been an industrious feat, Jeffrey was nowhere near accomplishing even the prerequisites. I realized he hadn’t attempted to hold his head up since the post-birth ‘reflex’ days. I remembered commenting to Dad on the phone that Jeffrey, pushing off my lap with his tiny powerful legs during the conversation, was strong as a horse. What happened?
Instantly, the denial/survival mechanisms began flashing in a dire attempt to push the thoughts - the realization - back into the safety net. Well, he hasn’t had to move, has he? Someone is always holding him, so how could he practice moving?
Mom said Peggy (her sister) used to sleep all the time as a baby. Peggy, then in her 70s, still taught belly-dancing and water-skiied! So there, I theorized to myself, Jeffrey was no doubt a laid-back soul, right?
Of course!
That, however, failed to explain his tiny concave chest and the abdominal breathing that had disturbed Randy from the beginning. Both characteristics were impossible to deny and yet had somehow failed to rouse my concern before now. I had simply assumed Jeffrey was another perfect baby, until the awakening only moments before.
Feeling an uncomfortable unraveling of my entire being, I wondered what else I had missed.
Chapter Twenty-five (excerpt)
.... The next evening, I received a phone call from the first batch of Jeffrey letters! A friend provided the name of a doctor who treated patients with a combination of traditional and nontraditional therapy, certainly worthy of further inquiry after the weekend. Two more calls came, both from former teaching buddies with helpful suggestions. I was eager for the phone to ring and to hear other avenues we might be able to consider on our quest to end this cruel joke.
While I thought Randy and I were holding up remarkably well, relatively speaking, I was concerned about Matthew and Katie. They seemed to be fine, although I knew they had to be experiencing significant inner turmoil. I tried to discuss stress with them and the need for each of us to release ‘stress poisons’ in our own way and time. In a nutshell, we would fall apart individually, in small groups, or simultaneously for an unknown duration of time. We would be an exceptionally merry bunch for a while, but maybe we’d be able to retain a smidgen of sanity in this lunacy. Maybe.
Randy, out on errands, called to report that he had locked the keys in the car, which was still running. Of course, the air conditioning was on to cool the organic eggs that needed to be refrigerated ASAP unless we wanted baby chickens on the loose. Not really. Murphy’s Law prevailed, even in the face of tragedy.
Well, we were trying to keep things as normal as possible.
Chapter Thirty-five (excerpt)
.... Somehow we hadn’t collapsed (yet), but we were apparently getting closer in more ways than one. I tried not to view the post’s fall as an omen and looked forward to helping out with the proposed local chapter of support, ‘local’ as in three hours across the state.
I didn’t realize then that I was reaping another blessing courtesy, ironically, of SMA. The mom, Cindy Schaefer, would soon become one of my closest fellow warriors in the SMA battle we both fought, and our friendship would soon transcend the boundaries of the challenge that brought us together....
Chapter Thirty-seven
September 10 was dreadful. On our way down the mountain to the two doctors’ visits, a sound completely unidentifiable other than a massive burp-cough came out of Jeffrey, and it scared off the remaining few wits I could claim. He seemed fine afterwards, but I battled heart palpitations the rest of the lengthy trip.
After two uneventful exams and the usual chiropractic adjustments, we dared to alter our usual post-doctor route to include K-Mart instead of Wal-Mart; it was about the only variation in our routine I felt capable of handling.
After only a few minutes in the store, I looked into the shopping basket to check my passenger, observing with great alarm Jeffrey’s opening his mouth as if to whine, with nothing coming out. Like a fish out of water gasping for breath, his mouth didn’t utter a peep. There was, however, no mistaking the terror in his eyes. And in mine.
I located a nearby dressing room with a bench within seconds and immediately whisked him out of his seat, hoping to elicit noise of any sort out of him. Nothing. I patted him on the back and tried to nurse him. Nothing. Headed towards a panic state and continuing to poke, pat, pound, prod, and pray, I wondered how loudly I could yell for help, fearing my efforts would resemble Jeffrey’s, the screams imprisoned in my own head and heart. His diaper was soaked to the brim, so while frantically trying to conjure up some tricks, I dug a new diaper out for a quick change, praying feverishly that something intelligent would come to me soon. As if a switch had been flipped, Jeffrey’s open mouth began uttering sounds as soon as the diaper was changed!
Tears flowed in profuse supply, as did the prayers of thanks, and we aborted our K-Mart expedition as soon as I thought I could stand and wobble to the car and then drive thirty miles back up the mountain. I wanted to go home, which I felt was fast becoming the only place that possessed any semblance of a safety net.
And only God knew when we would lose that.
Chapter Forty-seven (excerpt)
.... During the afternoon, Jeffrey mostly slept in my lap but cried out on occasion. Was he uncomfortable? Was he ready to go? Did he want to stay? Was he hearing instructions from Above that were upsetting (perhaps that he couldn’t leave just yet?)? Bad dream? I also noticed his nostrils flaring - that was something new, and
I was quite sure not good, as I’d read it meant a struggle for oxygen.
His breathing continued erratically, his eyes seemingly malfunctioned at half-mast. I found myself mumbling permission for him to go on, to accompany the angels who seemed to be drawing him closer. To say that was excruciating is a gross understatement, but desperate times called for desperate measures. I couldn’t know that even more desperate times were in the works.
At that precise moment, Jeffrey woke up, smiled like crazy, and began babbling at breakneck speed. Did offering permission ease the load for him in some way? What did he know, and what was he trying to tell me?
I wondered if maybe the undeniably pure joy illuminating from babies and children affected by SMA stemmed from their knowledge of what lay ahead in God’s plans. Maybe the apparent frustration for them on occasion was the inability to convey the ‘angel’ understanding, their very essence, to those of us still grounded firmly in the earthling phase. Who knew? Who was even privy to know?
Obviously, not I.
Chapter Fifty-three (excerpt)
Countless blurred minutes with the chaplain lapsed before Randy and I were finally allowed to return to Jeffrey in the emergency room, where I was asked to hold him almost as soon as we walked into his area. I prayed the request wasn’t nearly as ominous as it sounded and was overwhelmed with relief to see that our little guy looked quite calm... and was still breathing. The ER staff and Dr. Brown, who had legitimately earned his pallor, proceeded to explain the options to us (in essence, BiPAP or nothing) and asked what we wanted to do.
We decided to proceed with overnight BiPAP for the sole purpose of stabilizing Jeffrey enough to go home the next day. At the rate we were going, I was convinced we had been hurled against our will into a game of Russian roulette, and the click of the trigger determined whether the medical profession would help us get Jeffrey home... or kill him in the process.....
Chapter Fifty-nine (excerpt)
.... Mary, officially assigned as Jeffrey’s hospice nurse, phoned to say that the prescription she had ordered for Jeffrey was ready and had to be picked up that day. Randy left for the medical wonder drug that would ease Jeffrey’s days until our services as his earth family were no longer requested. When he returned, I ripped open the package and read the label of the golden syrup. Morphine. I was grateful to have something for Jeffrey’s comfort - whatever it took - but administer morphine to our child? Our baby?
This assignment wasn’t getting any easier.....
Chapter Seventy-six
At midnight, bumping us finally to November 2, my study of the morphine chart indicated that Jeffrey had had only .4cc in the past two hours, which, after the previous day’s demands, was barely worth noting. Five minutes later, however, he needed another dose. I tried squirting milk into his mouth, but it didn’t work. I then tried water, hoping that if nothing else, it would help keep his mouth from becoming uncomfortably dry.
Forty-five minutes later, Jeffrey received more morphine, along with a soothing massage with lotion on his legs and a cool rag on his forehead. His breathing, erratic and sometimes alarmingly shallow, kept my frazzled body, brain, and soul on call. By 3:15am, he had had four more doses; at 8am, he awoke alert!
He dozed while I was on the phone and nursed with amazing ease an hour later, once again playing the yo-yo game, the rules of which I still hadn’t figured out. In less than an hour, before I could finish adjusting emotional gears again, he needed suctioning and more morphine, and twenty minutes later, he simply didn’t look good. If God’s goal in this journey was to drive me insane, He had succeeded... long ago.
Over the course of the afternoon and evening, Jeffrey required several rounds of morphine to calm his episodes of respiratory distress. In the midst, I received an e-mail from a mom whose six-year old son had received a trach at three months, and she wondered if a trach might be an option for Jeffrey. SIX YEARS? I couldn’t fathom the torture of enduring SMA - this form of it, anyway - for years. I was sick of the suction machine, sick of the oxygenator tubing, sick of morphine and watching the clock and figuring out dosages and times. More than anything, though, I was exhausted from worrying about Jeffrey and wondering if I had any clue as to what I was doing or if we had done enough.
“God doesn’t give us more than we can handle” came to what was left of my senses.
I wondered if He had ever heard that.
Chapter Eighty (excerpt)
9:45pm - more morphine. Matthew, who had spent the evening jabbering nervously, lapsed into the safety of exhaustive sleep on the couch. Randy was upstairs on the phone, updating Nell, and I trusted Katie had crashed in someone’s bed at some point. 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.
Excerpts from
The Jeffrey Journey © Helen Baldwin 2010
Please sign the online petition to urge Congressional support for the SMA Treatment Acceleration Act!