In May, 1997, Randy and Helen Baldwin eagerly welcomed their third child, Jeffrey, as did his older siblings, Matthew and Katie. Jeffrey's arrival, unplanned but greatly anticipated, sparked a few adjustments in this family long removed from diaper duty, but Jeffrey was deemed a special gift. Eight weeks later, life took a completely unexpected downward spiral into the depths of despair when Jeffrey was diagnosed with spinal muscular atrophy (SMA), a relatively rare, progressive, genetic neuromuscular disease with deadly ramifications. The neurologist handed over the utterly devastating news that Jeffrey had a severe case of the most destructive form without a morsel of hope that anything could be done to thwart the effects of the killer disease. Faced with the nightmare that their baby was expected to die within two years and that there was no treatment or cure, Randy and Helen took their faith in God to a higher level and embarked on a quest to defy SMA and its stranglehold on their precious baby's life... and theirs. They sought the expertise of alternative practitioners, support from other SMA families, and relentlessly relied on prayers for Jeffrey's health and for strength, courage, and wisdom for themselves. The Jeffrey Journey is the story of how one family — with friends and family, prayer, and God's grace — rose to the challenge of caring for a dying child while realizing untold blessings from their life-changing assignment. The book is accompanied by Dreams for Jeffrey, a CD of lullabies composed for Jeffrey by his grandmother, JoAnn Derden (the author’s mother). To learn more about JoAnn and/or to listen to snippets of the soothing CD, please visit http://balderdashe.com/joannderden/index.html. To learn more about SMA: Families of SMA (http://fsma.org/) The Suite Life of Lucy and Ethel (http://www.thesuitelifeoflucyandethel.blogspot.com/) The author may be reached at jeffreyb@skybest.com.

One When it became obvious in the fall of 1996 that Mother Nature’s irritatingly regular monthly visit was overdue, the consideration of why it might be late skimmed naturally and understandably right over the obvious. Randy’s new coaching job held him hostage in more ways than one, and I’d been busy not only with Matthew and Katie and volunteering in their classrooms, but also with the lodge. My parents were the official innkeepers of this hideaway on the spectacular Blue Ridge Parkway, but I pitched in as another willing ‘n’ able body, cleaning up and out and otherwise trying to help transform the formerly neglected Cinderella into the beauty we knew she was. It was a full-time effort for all. With no time or energy to spare, a house the size of a large closet, cessation of unnecessary maternity insurance benefits, and an attempt to subsist on a single teacher’s pittance, the one item not on anyone’s agenda was another baby in this family. Surely Mother Nature had consulted her calendar and decided - finally - that mine was a body ripe for the rewards of menopause, and She could just scratch me off her list of monthly nagging. Oh, that Mother Nature - such a kidder. Such a master of surprise. Fourteen (excerpt) I managed to locate an escape at some point so I could be occupied when Paul went in to examine Jeffrey, napping in the crib. While I would have done anything for Jeffrey, I knew he was in competent hands with Paul, and I knew Randy would ask the right questions... and I didn’t think I could talk or even listen without crumbling. Besides, I needed some heavy-duty last-minute, no-holds-barred praying time. While I submerged myself in folding lodge sheets and towels, Katie came to inform me that Paul was in with Jeffrey. After a few more moments of intense prayer, I somehow made it to the room and opened the door. Paul reported, with an eerie calm not too unlike Duffy’s just days before, that one of Jeffrey’s lungs sounded dull, and that there were no reflexes anywhere. None. Jeffrey was a rag doll baby with the frog-legged position typical of floppy babies. He said that some of the possible explanations for his findings could be serious, and that Jeffrey’s doctor would probably want to refer us to a pediatric neurologist as soon as possible. The expression on Paul’s face was not comforting, though he tried to scrounge around for a glimmer of optimism to toss into the catastrophe du jour. A glimmer at best. Somehow my body stayed in a vertical position. With my head and stomach reeling and my heart about to explode, I drifted back into my safety fog for the rest of the day, grabbing any excuse to cuddle Jeffrey and just stare at him as we rocked. Though an optimist by nature, I couldn’t stop myself from envisioning all kinds of worst-case scenarios. I stopped short of envisioning the worst. Eighteen (excerpt) Dr. Smith sat down and seemed to ponder momentarily how to handle the presentation of his findings. It didn’t take long for him to knock the remainder of our wobbly props away. Far away. “The probable diagnosis here is spinal muscular atrophy, a disease in which the motor neurons of the spinal cord and brain stem responsible for sending messages to the muscles are affected. The muscles that control movement, sucking, swallowing (pause), and breathing (pause)... will eventually stop functioning. Thirty-eight (excerpt) Jeffrey’s noisy gurgles on September 13 warranted my breaking out the suction machine. I managed to get him situated for his first suctioning experience without a total emotional breakdown, an accomplishment in itself, and flipped the switch to ON. It sounded like it had marbles in it (I’d wondered where mine had gone), so I made a phone call to the medical equipment company for a replacement. I finally convinced the person on the other end that I did know what I was talking about by turning the machine on and holding the receiver up to the loudest spot. With ears no doubt ringing like a beginners’ bell choir, the representative promised a replacement would be delivered soon. A part of me was sorry the machine didn’t work, but a larger part was relieved, as no one had asked me if I was ready for this chapter. I wasn’t. I knew we would need to suction when Jeffrey’s swallowing muscles were unable to handle his saliva, and that day would come soon enough. Perhaps it already had. Sixty-nine (excerpt) October 29 - I had fallen asleep in the Jeffrey chair until a little past midnight. Since Jeffrey was sound asleep on my lap, I made a daring attempt to take him and the tubing upstairs to bed with Randy. I could have slept without a moment’s hesitation, but I decided I’d better take advantage of whatever spare minutes I might have and tend first to necessities that were often unattainable, like a shower. I then collapsed in bed at 1am, dozing over an hour until Jeffrey needed to move back to the chair. Four hours later, I gave Jeffrey morphine to ease his distress and expected him to fall asleep. He did... for ten minutes. He awoke with bright eyes and a lot of jabbering, which was always a treat, regardless of the time. Katie popped up out of bed at 6am, got dressed, and read, all on her own. I wondered if aliens had come during the night. Seventy-eight (excerpt) From 7:40pm to 10:05pm, there were four doses of morphine, and I had to suction even with the paci just dampened with water. Jeffrey’s swallowing muscles were now gone, and his sucking muscles weren’t far behind. I prayed, trusting God would allow his breathing muscles to stop... soon. There would be no pictures of Jeffrey in his going-away gown.

Helen Baldwin lives with her husband, Randy, in the mountains of North Carolina, with occasional guest appearances by their college offspring, Matthew and Katie. With a stubborn lab, goofy retriever, C-A-T, pond critters, and assorted wildlife on top of the typical challenges of an old farmhouse in a serene, rural mountain setting, life stays entertaining in its own way. Their simple but inspirational surroundings encouraged them to add a small cabin, which is available for rental (shameless plug here, with more info at angel-mountain-cabin.com). For several years in a previous life, Helen taught young children with orthopedic and multiple handicaps in Columbia, South Carolina. She then retired happily to the status of ‘just a mom.’ Ha. Shortly after the surprise arrival of baby number three, Jeffrey, ‘just a mom’ became ‘nurse/mom’ when Jeffrey was diagnosed with a severe case of the deadliest form of spinal muscular atrophy (SMA), a progressive neuromuscular disease. Jeffrey earned his official wings at 5-1/2 months. Not overly fond of writing until she quit being graded on it, Helen handled newsletter duties for the family’s former lodge and collaborated with her mother, JoAnn Derden, on Tips for Making Music Fun & Easy! as part of their work with the Smart Start program in North Carolina. 'Tips' will undergo a mini makeover and be released again at some point. Stepping way outside her comfort zone, Helen finally accepted primary responsibility for her own websites, keeping her brother, Paul, on speed dial for whatever she perceives as an emergency. She is most grateful that Paul’s doctor skills, including compassion and patience for the less smart, er, experienced, extend to tech stuff. Helen can handle the writing, but the tech stuff.... Thanks to a moment or two of insanity, Helen and Cindy Schaefer, good friend, fellow SMA mom, and Foreword writer, have dived collective heads first into the world of blogging. The primary focus is on SMA matters, with a steady dose of ‘normal’ madness tossed in. If you dare, visit thesuitelifeoflucyandethel.blogspot.com. The Jeffrey Journey (thejeffreyjourney.com) is Helen’s first solo book. For additional information about SMA: Families of SMA (FSMA) - www.fsma.org or www.curesma.org Fight SMA - www.fightsma.org SMA Foundation - smafoundation.org SMASpace - smaspace.ning.com In an effort to help assist with SMA families’ seemingly endless equipment and myriad other needs, a minimum of 10% of the profits from the sale of The Jeffrey Journey is designated for such.