The Jeffrey Journey
Excerpt and More
The Jeffrey Journey:
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.
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?
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.
Feeling an uncomfortable unraveling of my entire being, I wondered what else I had missed.
- Jeffrey Baldwin,
From The Jeffrey Journey:
SMA's intense, wicked path of destruction begins with the pronouncement of the diagnosis and prognosis of this killer disease. There is no end. Yet.
It seemed fitting to include a dedication to those whose lives have risen to the challenges of SMA, so I began gathering names and permission to publish them. With relatively minimal effort in the beginning, hundreds of names surfaced, and hundreds have been added on a regular basis since then... until there are now more than a thousand. Hundreds more.
This simple tribute recognizes a mere handful of those who have somehow paid their due for involuntary induction into the world of SMA. Only the first names or initals are listed if I was unable to contact the families and/or procure permission. They are by no means slighted in honor or memory.
Sincere thoughts and prayers are extended to the families of those who earned their wings after this printing and to all newcomers to the family of SMA.
Congratulations to the families and individuals with SMA who demonstrate such tenacity and gusto in life, particularly when they shift the focus to the needs of someone else. What an amazing group. An amazing family.
I am proud to be a part of it.
- Helen Baldwin, Author of The Jeffrey Journey
The music in the dedication video is from Dreams for Jeffrey, a collection of original songs by JoAnn Derden, Helen's mother. JoAnn prepared a cassette tape of these songs after learning that her final grandson probably wouldn't be with his earthly family long. He loved them!