Thursday, June 17, 2010

The Jeffrey Journal

[Warning: If you have ever lost an infant or child, this post may be upsetting to you. While that is certainly not my intent, I realize it's possible, and I wanted to warn you.]

Imagine holding your months-old baby in your arms, getting to know his/her spirit, reveling in each gorgeous smile, seeing yourself in his or her eyes, feeling your heart burst with love. Add to that the complication of knowing that your child was not long for this earth; that he would soon pass away because of lack of a cure for a genetic disease.  Helen Baldwin knows this pain, and she wrote about it with grace in a memoir called The Jeffrey Journal.

I won The Jeffrey Journal from Helen (Lucy, of The Suite Life of Lucy and Ethel) in a giveaway. I'll be honest and tell you that I had seen the book before and figured it really wasn't for me; I'm way past the having babies stage and don't have a frame of reference for having lost a child. Plus, I thought it might be kind of depressing. [Sorry-Just being real.]    Out of respect to Helen, I glanced through the first few pages, thinking I would just get an overview, and I found that it had an uplifting tone to it. Her story hooked me, and I decided to take it with me on our weekend camping trip. I finished it the next day, and am very glad I did, because her story is inspiring, and that's why I offered to write about it here.

It surprises me that 1 in 40 people are carriers for Spinal Muscular Atrophy (SMA), and yet I had never heard of it before reading The Jeffrey Journal. I had no idea that there was such a disease in existence, let alone one that is the number one genetic killer of children under the age of two. What's amazing is that there has been progress in SMA research, and according to Helen, a cure is actually on the horizon.  In fact, a cure for SMA will also help those battling ALS, Alzheimer's, Parkinson's, Duchenne muscular dystrophy, and many others.

Helen and her family suffered a terrible loss when their beautiful little Jeffrey passed away, but her fierce love for him lives on, and I think her attitude is inspiring to anyone going through troubled times.  I was touched by her story and think anyone whose every loved and lost a family member would be, too. Please help spread awareness and support by friending Families of Spinal Muscular Atrophy on Facebook.

For research, support, and hope for families dealing with SMA, please visit Families of SMA.
Purchase The Jeffrey Journal here.

4 comments:

  1. Thank you for this; I could use some inspiration. I have a grandson with a very rare never before heard of syndrome..they said 48 hours, then 2 month's, then 2 years and then we learned the oldest child with this syndrome was 12 years old. Our angel Kyle will be 13 in September..He inspires us everyday with the tiniest of milestones..but we are aware that every hug, every kiss goodnight could be the last..so we just love him and each other...

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  2. Thank you so much for such a thoughtful review and post, especially since I imagine your schedule has remained packed (glad to hear the conference is so good!).

    I understand your reluctance to read a book about the death of a baby but glad you were 'forced' to do so with a win :) I think many would agree that it doesn't sound like a first pick for recreational reading; many have expressed shock that there was ANY humor in it. You don't fully appreciate the ability to laugh until you are thrust into a situation that isn't funny at all.

    I greatly appreciate your help in getting the word out about the book and SMA, especially since you are an SMA 'outsider.' Considering 1 in 40 are carriers, that alarming stat likely includes some of your readers, a few of whom may experience SMA at some point down the road. By then, though, there will hopefully be some terrific news of treatment... or a CURE!!! We are getting closer.

    To Doreen, many prayers to you, and congratulations on Kyle's beating the odds! I LOVE to see anyone (especially babies and children) defy grim prognoses, particularly when they come out of arrogant mouths in white coats.

    Again, Mrs4444, thank you :)

    Helen/'Lucy
    The Jeffrey Journey*
    thejeffreyjourney.com

    (*It IS based on a journal, though, so many call it that!)

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  3. Honestly, I can't even imagine...

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  4. And don't you just LOVE Helen? :) She's favorite of mine.

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