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 the medical community. 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 to share our family’s journey with others, especially those who are on their own unique pathway with a 4P- 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 my own “sanity,” our marriage alive, and our family “doggedly happy,” as I describe us, was a struggle, especially at the many times of crisis we had. I include the coping strategies we used to carry us through, with the hope that others can gain encouragement and strength for all they need to do to help their child reach their full potential, and keep their entire family thriving.
I would love to hear feedback from anyone who reads Craig’s story, and about your own situation. I also have a blog at http://craigrichardsonalifeworthliving.blogspot.com if anyone would like to post something there. You may notice that the title of the blog is shorter than the title of the book; a friend highly recommended I add “With Disabilities” to the title, to further define its genre.
Rebecca/Becky Richardson