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BOOK REVIEWS - The Jeffrey Journey
Unfortunately, I have lived this story.... 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.
The Baldwin's approach to caring for Jeffrey, apathy for the medical "specialists", desire for new and alternative methods for managing Spinal Muscular Atrophy (SMA); and their overall belief in God's will and plan for their son - was eerily similar to our own personal journey with Benjamin. While Jeffrey had to endure more aggressive treatments than my son Ben, the fighting spirit of these children were undeniable and inspirational.
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.
The effects of SMA, on our children and on their families, will vary with each unfortunate diagnosis. From Type 1 to Type 3, from 2 weeks old to 22 years old, children will undoubtedly have some hills to climb. While Jeffrey Baldwin lost his own battle after 5 short months of life, he fought with the will of people 100 times his age.
And Helen Baldwin's family fought SMA with the only thing that they knew: love, faith and trust. She has detailed the Baldwins' actions and revealed their inspiration that guided them on an unexpected, but special journey.
Jason Amiss (The Benjamin Foundation)
19 Dec 2003
Our copy of the book arrived on Tuesday so I took it home to read knowing that I needed to give it the time, peace and quiet it deserved. I took it to bed with me and quickly found it 'unputdownable'! Helen has a wonderful way of writing, of keeping you just desperate to know what happened next and yet you know as a type I Mum what was likely to happen next.... it is a very vivid account of their all too brief time with Jeffrey. I read the book in two sittings. It was such a gripping story of a baby with type I SMA, I found myself thinking 'gosh' that was just like Jennifer or 'help! I thought just that too and frequently I thought I was going crazy too'.
Helen has an incredible knack of being able to express her feelings, thoughts, great love and acceptance of Jeffrey's fate. The book is an inspiration for anyone who has cared for a type I SMA baby or still walking that painful hard road. It gives great comfort and Helen's belief in God that he will help them cope is a source of great strength to her. I envied her faith. I don't think the book makes good reading for the parents of newly diagnosed type I SMA babies - it is very detailed and as we all know, no two babies are alike so Jeffrey's situation may not be quite the same as another baby....
There is a really good reference section at the end listing a variety of helpful resources including the Jennifer Trust, this is followed by a list, seemingly endless, of little ones still fighting their battles with SMA and finally a too long list of those who have already earned their angel wings.... I felt a quiet peace when if found Jennifer's name there...
The CD is haunting gentle music some of which seemed so sad.
This book is now available from our Book Library - contact Jackie Doubtfire on 0870 774 3651 at the JTSMA office alternatively you can buy a copy from Trafford (the publisher), with offices in England and Ireland. You can go to the book page and order directly. It is priced at £15.32, and 10% of the profits from the book are earmarked "for SMA purposes, primarily for - but not limited to - the needs of families, so the more books we sell, the more families we can help!"
Anita Macaulay (The Jennifer Trust for Spinal Muscular Atrophy)
And now for the most important thing ... THE BOOK. I did, with great excitement, find it in my mailbox on Thursday! Started it as soon as possible and read at EVERY opportunity, finishing it while eating my dinner last night. 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 undoubtably 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 (June 2004)
My son Noah (Type 1) passed away on Dec. 28, 1999. I just finished reading Helen Baldwin's book, The Jeffrey Journey. Helen, I want to thank you for writing this story. Your honesty, your spirit, and your willingness to share the details of living with SMA was cathartic, and inspiring.
I really encourage everyone to pick up a copy of this book and read it. While the tears flowed from page 1 through the end, I found that the book has helped me to dig out from some of the pain, and uncover the hidden treasures in the memories. I will never forget Noah's smiles, the way he loved to yank on his balloons to watch them dance, or the last moments of his precious life. Thank you for helping give me the courage to look past the pain.
Cathy Egan (November 2004)
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 (Jeffrey's hospice nurse)
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)
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
... 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 (SMA Support)
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 (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.
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
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
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
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
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The Jeffrey Journey © Helen Baldwin 2007