On a warm August day over thirty years ago I lay in a hospital bed in Detroit after giving birth to my firstborn, Amanda. Amanda had been transferred to the Children’s Hospital down the street within hours of her birth. Marilyn, a very sweet social worker from Children’s was at my bedside and had gifted me with a booklet that was all about spina bifida.
Spina bifida is the birth defect that Amanda was born with.
Thirty years ago, I had never heard of it.
From having absolutely zero knowledge of what spina bifida was, how it would affect my daughter, how it would impact our lives over the years, what things I needed to do for my daughter, and what I could expect or anticipate was all wrapped up in the booklet from Marilyn.
Here are pictures of the booklet (which I happened to come across recently). The first is the cover, the second is showing how ‘thick’ it is while lying on the counter:
So WHY am I writing my blog and WHO is the YOU I am writing for?
My belongs to all you spina bifida families out there. Thirty years ago I hungered for more information and more families like ours who we could relate to and become friends with. Because of medical advances in the treatment of spina bifida as well as the marvelous ability to network with others through computers – knowledge and camaraderie is so readily available today.
Whether you are touched in your lives by someone with spina bifida or not, this blog serves to inform you more about it. And for all my SB peeps – thank you for being such a great community of computer connections – and friends. I hope I can serve you all well as my new blog site will include resources for all of us. (Pass it on.)
(For those of you a few days behind on my blog updates – a new and improved web site is coming! I plan to keep my focus on my faith ‘cuz I am nothing without Him – but my second focus group is the spina bifida community. Stay tuned for the third and last group that will make up my triad!)