As the mother of a child with Wolf-Hirschhorn Syndrome, I experienced most of the emotions possible in parenting Craig over a 25-year period, including shock, sadness, confusion, fear, crisis, overwhelming love, grief, anguish, numbing fatigue, anger, joy, pride--the list goes on and on. When he was three, I wrote the letter to Exceptional Parent Magazine which facilitated the networking of other families, and the start of the 4P- Support Group. As a nurse, I experienced and observed the other side of "patient care" constantly, evoking more emotions of gratitude, dependency, neediness, and disappointment at times with his medical care. When Craig died, I began writing his life story, and I focused heavily on those emotions, because they were so intense in our lives. I have published this memoir, and want to share our family's journey with others, especially those who are on their own unique pathway with a special needs child. A huge issue for families is balancing the needs of each person, especially the siblings of the child who, by necessity, commands a disproportionate share of the attention and resources. Keeping our marriage alive, and our family "doggedly happy," as I describe us, was a struggle at times. I include the coping strategies we used to carry us through, with the hope that others can gain strength for all they need to do to help their child reach their full potential, and keep their entire family thriving.
Craig's book is available through Amazon.com for the paperback or Kindle version (the beginning can be read gratis), and also at OutskirtsPress.com at a lower price, especially for orders over 10 books.
You may notice that the title of my blog is shorter than the title of the book; before publication, a friend highly recommended I add "With Disabilities" to the title, to further define its genre.
I would love to hear feedback from anyone who reads Craig's story, and about your own situation.