I’m excited about being asked to do a monthly blog and wanted to start out with an introduction.  My daughter Stephanie was born with kidney disease and later received a secondary diagnosis of autism just to keep things interesting.  She was homebound as medically fragile so we were literally in survival mode the first few years.  When I was finally able to get out, one of the first conferences I attended was by the National Organization for Rare Disorders.  I attended a workshop by Suzanne Mintz of the National Family Caregivers Association (NFCA).  I had a “light bulb” moment when I realized that not all moms were still feeding baby food or diapering their five year olds, and wondered how much longer I’d be doing that.  It was then that I realized that besides being a mom, I was also a caregiver.  Caregiving isn’t just an eldercare issue.  It goes across the lifespan with “well-spouses” and parents of children with special needs.  I am 5’7” and was down to 95 lbs.  You know you’re in trouble when you think going to the hospital might be a nice break.  NFCA teaches family caregivers how to take care of themselves while caring for another.  More people enter institutional care due to caregiver burnout rather than deterioration of their condition.  One of the most powerful things I heard from Suzanne was “you may not have all the choices you had before, you may not even like some of the choices you have, but you still have the power to choose.”  That was so empowering as I realized that we as a family could partner with professionals and decide on treatment options such as dialysis, transplant, etc.  I became a volunteer in my state to spread the word and let families know that they weren’t alone.  NFCA membership is free to families and their newsletter has practical tips for caregivers like how not to pull out your back while lifting.  There are also free online communities.

I love the title “Hopeful Parents”.  My daughter Stephanie spent her first weeks in the neonatal intensive care unit at Children’s Hospital of Philadelphia.  She was hooked up to a respirator, heart monitor, tube feeding, and IV and wasn’t initially expected to survive.  She’s now 17.  She has changed my life and is my inspiration.  After struggling with both the medical and educational systems that were supposed to be helping our family, I later became an advocate as the state coordinator for Family Voices, national network on behalf of children with special needs.  I always refer to toll-free numbers and free resources (if it’s not free I’ll let you know).  Next month I’ll discuss areas that families of special kids need in the areas of health, education, and support.

Resources:

National Organization for Rare Disorders www.rarediseases.org (800) 999-6673

National Family Caregivers Association www.thefamilycaregiver.org (800) 896-3650

Family Voices www.familyvoices.org (888) 835-5669