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The Jeffrey Journey
by Helen Baldwin
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Reviews
I read your book in one sitting when it arrived today, and once again I was overwhelmed with feeling and tears in remembering the circumstances which allowed us to meet, and grow close. In pondering the time I was given to know Jeffrey even a little, and you and your entire family, I can only believe that I was well and truly blessed by the good God. As a nurse, I have come in contact with a great many people, and over the years many, if not most fade from memory, but not Jeffrey. I have him pictured clearly in my mind, lying on his pillow in your lap like a precious jewel the first time we met. (The book clearly explains the tiny touch of skepticism I thought I saw in your eyes that day). No wonder! I am sorry you had to once again "lead another pack" with me in it, but maybe you are meant to teach, not just the nuts and bolts of SMA, but through example, the meaning of true love. True love is what I saw, and true love is what I remember. You, your loving and protective husband (so like good St. Joseph), your generous and brave older kids, and the baby who helped everyone (and especially me) become so much more than we might have been without him. I could not know Jeffrey as you did, but I saw the fruits of his short life, and they seem to be without measure. You will give hope and inspiration to everyone who reads and listens. Your eloquent journaling of your exceptional journey is uplifting, and despite the sad subject, a joyous map to other travelers wending their way. I thank you from the bottom of my heart. Mary Ward, RN (Jeffrey’s hospice nurse)
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Beautiful. Wondrous. Enlightening. Uplifting. Sad. Wow - it took me so many places, but left me feeling good. The music is a wonderful complement. Both of these were the kind of things the whole world needs to see, but only a select few will really understand. My job and my life in general force me to deal with death all too often. This book will fortify me to deal with it and the folks left behind. Thanks.... Your sweet Jeffrey was sent to you for a special purpose and you have exceeded all expectations of what could come good of it. Parents of any disabled child can identify with your moments of horror and seeing that there can be someone who, at times, sees that humor is a gift from God. None of us are fully prepared for what life is going to bring us, but accepting it with grace, compassion, humor and just flat accepting it is wonderful. What you offer is hope. We all need that!!!! The many lives you have touched are better for your having been there. Mary Wooldridge, RN (nurse at former Brockman School, where Helen taught)
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You've taken one of life's most difficult tasks, woven through it the threads of significance of life in general, generously shared the medical garbage (i.e. doctors’ appointments, doctors’ opinions, drugs, equipment, insurance, the COST of everything) that is thrown in with the disease (as if the disease isn't enough in itself) and seasoned it with a balanced dose of humor. How none of us cracks up completely and ends up 12 marbles shy of a dozen is beyond me. I am deeply touched by the courage that Jeffrey displayed through his short life.... thank you for sharing Jeffrey with us. Jim Gaudreau, SMA parent
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Your book helped me get through a tough diagnosis. My son, Samuel is 5 yrs old with SMA type II. The book was given to me as a gift by a close friend. It took me many stages to get enough courage to read - when I got the book, I cried and put it back in the box, then I read the back cover and put it back in the box, then finally after several months - I read your journey. It gave me an inner strength. Thank you for sharing your story - we all still need to get awareness out about this disease. We will find a cure!! Best always to you and your family. Janet Schoenborn, SMA parent
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The book not only has inspired me but has helped me a great deal in healing. I read it in one night because I couldn't put it down, so now I am rereading different chapters again! It has made me feel human again and helped me feel okay with different feelings that I had, have and am having... especially the whole "am I insane or crazy for even thinking this way?” Along with not bearing to see my baby suffer another minute, there definitely was a sense of relief when she was free from this heart-wrenching disease! It was so good to hear I wasn't alone and to relate exactly to how you were feeling! You have inspired me to continue to work even harder to get the word out about this genetic killer! I often envision your spot up on your mountain with Taylor and Jeffrey running around playing tag!!! Take care and God bless.... Tisha Reagan, SMA ‘angel’ parent~
I just wanted to let you know that I read your book within just a few nights because I couldn't put it down. Thank you so much for having the courage to share your journey with the rest of us. I had often wondered what it must be like to lose a child since it is possible I may go through that experience someday, but that's not something very many people are willing to talk about. I really enjoyed your sense of humor, and I learned a lot from your story. Thanks again! Lisa Kay, SMA parent~
I don't quite know what to say to you. Thank you doesn't seem to express the depth of my gratitude to you for writing this book and sending it to me. I received the book yesterday. I started reading it late last evening. I just completed it about 15 minutes ago. I couldn't put it down. As I read earlier today, I kept from becoming emotional by focusing on continuing to read the next chapter. However, I had to break and drive my 15 year old daughter to her volunteer job at the hospital. As we drove we listened to JoAnn's beautiful CD. At that point, the tears began and I had a difficult time turning them off. I returned home to complete the book. I wanted to E-mail you immediately but at this point, my emotions were out of control. I am 50 years old. I began having symptoms when I was about 9 years old. As I read about Jeffrey, I couldn't help but feel guilty. I have enjoyed 49 1/2 more years of life than he was presented with. As I finished Jeffrey's Journey I came to a realization about myself. I have always put thoughts about SMA on the back burner, so to speak. I have been quite involved in other worthy causes but I think I now realize why I have not contributed more effort to SMA awareness. I think it might have been a defense mechanism for me. Getting to know sweet Jeffrey through the pages of your book has helped me realize I must do more. I plan to review the many resource listings you have provided. I will find a connection with one or more of these and begin doing my part. I will also be corresponding with The Oprah Show to encourage an episode dedicated to Jeffrey's Journey and SMA awareness. I will ask friends and family to do the same. As I explained, this will be a new venture for me.... Thank you again for sharing your deepest thoughts and memories through your book. Beth Carollo, SMA (self)~
Your book The Jeffrey Journey was truly the best Christmas gift I have ever received. I felt as though I was reliving my own story with someone who finally knew what it was like in receiving such a diagnosis. I truly enjoyed the humor you brought to something so devastating and it gave me tremendous strength.... Jennifer Bolen, SMA parent~
This is one of the most well written books about a family and a crisis and all the struggles to get through it! We related to the story because we watched our daughter go through this with our grandson, Tommy! Rest in Peace, Tommy, Jeffrey, and all the other angels who left us. Cure SMA! Kathie Harris, SMA parent
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... Through one of my other readers, I met Helen Baldwin, who has also gone through the heartbreak of losing a child. Helen sent me her book, The Jeffrey Journey. My heart broke with her. The two good-byes I’ve had with my two children were quick, with no time to prepare. It was not an agonizing, watching your child die before you, death.At six weeks, Helen had that gut nagging feeling that something was wrong with her baby to the point of making her sick, which she called “ET” - extra terrified (I know that feeling.). At eight weeks of age, little Jeffrey was diagnosed with Spinal Muscular Atrophy (SMA). He had the most severe type called Werdnig-Hoffmann or Type I. SMA is the number one genetic killer for children under the age of two.
This book is Jeffrey’s journey and their family’s journey. Helen is blunt with what she goes through. She shares the notes she kept and the fight to keep her son alive. She questions her assignment from God. She fights to learn about the disease, and does not always just go along with protocol.
There is hope. Little Jeffrey’s life has not gone in vain as this mom shares his story - their story. His life was worth fighting for. At the end Helen writes a letter to our Heavenly Father . . . here is a glimpse of why Jeffrey and ALL babies are worth fighting for:Because of Your generosity in allowing us to care for Jeffrey, we learned not only about him and his special needs, but more about You, ourselves and others. We have been reminded just how unique each and every one of us is and how blessed we all are to be part of Your plan. We also more fully appreciate Your own sacrifice to us so long ago. And so we rejoice with You and thank You for sharing Jeffrey with us and for being with us every step of this incredible journey.
If you or someone you know is or has fought a battle for a child, this is a must read book.... Loni Froehlich VanderStel, 'angel' parent
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After receiving my copy of The Jeffrey Journey I was hesitant to begin reading, fearing that Jeffrey Baldwin's story would bring the raw emotion of daily routine - of my own son's life and death - back to the forefront of my mind (as if it's not always there already). What I found, instead, was a kindred spirit wrapped in a story that I could not put down! Helen Baldwin's gripping detail of her family's life, passions and tribulations, in the wake of one of the most deadly of diseases, had me turning pages at breakneck speed. I found myself constantly saying, "Just one more chapter." While this may be due to my own personal situation, Helen fluently describes her feelings and makes you feel as if you are participating in every doctor's visit, in every struggling moment, and in every family embrace. Contrary to my original thoughts, The Jeffrey Journey should NOT be read just by SMA parents or immediate families, but also by doctors, friends, politicians and by anyone interested in reading a riveting human interest story.... Jason Amiss, SMA ‘angel’ parent
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I just finished The Jeffrey Journey. "Thank you" is not adequate enough for putting your life, my life, to words; but "Thank you" is all I have right now.... Heather Kennedy, SMA ‘angel’ parent~
... it was really quite an experience to sit down and hold a book in my hands that was about SMA and a family dealing with it, it felt so RIGHT, you know? I don't know if saying I 'enjoyed' the book is the right phrase because of the content, although I did. But I appreciated it and recognized it and it touched me as I'm sure it will anyone who reads it.... Laura Stants, SMA ‘angel’ parent / founder, SMA Support~
I recently read the Jeffrey Journey!!!! Wonderful book. I am not much of a book person but I couldn't put it down once I started. Sorry to say but that is the first book I read cover to cover so that says alot coming from me!!! Rick Fiedler, SMA parent~
You have inspired me so much. I received your book Friday in the mail and never left the couch yesterday. I read the entire book in one sitting. I just couldn't put it down! I must say, reading your book was like looking in a mirror. I too am a teacher, but of regular ed children. I used to look at special ed teachers and say, "Wow, I just could never do that. It takes a special person to handle those kids." I learned quickly, never say never. When things like SMA happen to people/children, you think... that happens to other people. How naive I was! I learned very quickly, I AM other people! Reading your book has given me such a sisterly bond towards you. None of my friends truly understand how I feel or what I went through day to day. I have never expressed the feeling of relief to anyone because it just does not sound right coming from a mother's mouth who lost her child. But the way you expressed it in your book... well it was perfect. You are an earth angel.... Courtney West, SMA ‘angel’ parent~
...You wrote your story beautifully, and so much of it was so familiar. The pictures on the book made me want to look through your entire photo album - Jeffrey's beauty just shines through and it's so clear that he is beloved. Such little princes we had. I loved seeing Duncan's name in the dedication and all the other beautiful names - what a bond we all share.... Jeanne Jones, SMA ‘angel’ parent~
I FINALLY got to read the book... I was able to read it in one sitting. Very easy to read and you captured the audience to want to keep reading. All I can say is, I had tears flowing several times. It is a beautiful story and tribute to an amazing little boy and his wonderful family. Everyone should read this and learn about how precious life is. Annette Reed, SMA parent / founder, Miracle for Madison and Friends~
The CD is beautiful, it is so peaceful, soothing and just wonderful listening.... Nancy Moore, SMA grandmother~
I kept meaning to write you after reading the book to let you know how touched I was by it. I must've cried a river. I'd love to offer some profound words of how inspirational you and your family are, but I can't describe it. Most of all though, I found myself praying that your other two kids have grown up to be happy, healthy and well-adjusted (note from Helen - they have!). I was so touched by their tenderness towards their little brother that I thought about them for days after reading the book.... Brenda Shofner, SMA aunt~
I read it this weekend and wanted to let you know how touched and inspired I am by your journey. It sounds as though Jeffrey was indeed an angel sent to earth for only a short time. Thanks for sharing your story... as someone who works for an organization trying to eradicate diseases like SMA, your story makes me that much more dedicated to MDA's mission to find a cure. Meg Hodges, Regional Director - MDA~
I just finished The Jeffrey Journey... The first 2/3 of the book were a frightening relapse of what Tisha and I went through just 8 short months earlier, and I was having a hard time reliving it but was curious to see how another family dealt with the sheer destruction SMA delivers the last months of a child's life. Your decision as a nurse and mother I could not support any better and I know that Jeffrey and Taylor are shining down on us. We are planning on circulating the book, first throughout our family, having everyone sign the copy and leave a blessing for Taylor, then to close friends. In addition I plan to post a book review encouraging everyone to read The Jeffrey Journey. Scott Reagan, SMA ‘angel’ parent~
...once I had your book in my possession, I just couldn’t resist picking it up and reading it.... You are an amazing and gifted writer. Knowing how SMA can ravage a family I was not expecting so much humor in the book.... I knew that I would cry throughout the book but had no idea that I would laugh so much, too! You did such a fantastic job of letting outsiders see what a family truly has to go through when faced with this horrible disease.... I wish I had been able to meet your little Jeffrey. Shannon Bostrom, SMA aunt~
I read your book. I delayed for awhile because it's hard to read about someone losing their child. Especially, so shortly after Lindsey's death. However, I found it inspiring and a very compelling read. I was moved by your faith in God and your ability to see His work and His love in Jeffrey.... Thanks for having the courage to write such a book. Brian Ronningen, SMA (self) and ‘angel’ uncle~
I finally had the courage to begin reading your book last night and am so impressed. First of all it is wonderfully written, and I admire your sense of humor. Sometimes that is the only thing that gets us through the tough times. I can relate so much to what you went through even though the types between Jeffrey and Ethan are different - denial that there is anything wrong while really deep down knowing that there is, doctors, testing, poking, prodding, questions, financial concerns.... It is hard to find others that understand because they haven't been through it.... Steph Och, SMA parent~
I absolutely love the book! It has been a great source of inspiration for myself and my husband. Thank you from the bottom of my heart for having the courage to share your personal story with the rest of us. Need to tell you too that the "Jeffrey book" and CD are getting great use at our house. Tessa used to use the CD to go to sleep every noon and every night... Now she gave it to her little brother (Jack-18 months) to use to go to sleep. So twice a day, sometimes more we listen to it. Lana Weisenberger, SMA parent~
Just wanted to comment on the Jeffrey CD your mother made. It's beautiful and Nathan loves it! He relaxes to it while resting in his crib and napping. The nurses love it too! Jennifer Russell, SMA parent~
... THE BOOK. It is fantastic. I have been trying to think of the right adjectives and they haven't come to me yet. One of my big impressions is what a gift this will be for so many people. It is a huge contribution - one of those things that will have tremendous and far-reaching effects that you will never even be able to imagine, but must trust are there. It will undoubtedly help in the quest to overcome SMA. It will surely give comfort to MANY whose hearts have been broken by various life events (what an incredible contribution to humanity!). It is simple, in some ways, but HUGE - by sharing this, you will make quite a ripple in the lives of many. It would be my dream to leave such a legacy in life. Reading it was both fascinating and WRENCHING. The profits of the Kleenex manufacturer (or rather their cheap competitors) will soar after my trip through the pages. And yet, after I had finished every single page (I even read EVERY name), I was surprised by a wonderful sense of calm. I thought that was so interesting in light of the peace you described after Jeffrey became an official angel. I've decided that if anyone can read this without being strongly moved, we will promptly ship them off to med school and arrange for them to go into partnership with Dr. Usually-Right. Leckie Conners, friend
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