are only four kinds of people in the world – those who have been caregivers,
those who are currently caregivers, those who will be caregivers and those who
will need caregivers.” ~Rosalyn
thing about being a caregiver is that I never aspired to be one.
name is Margaret Meder. This is my
first blog post. My husband Randy and I are parents to two boys who are two years apart in age. Our youngest son, Evan, has special
health care needs. He was born in
2004 with a rare craniofacial syndrome called Apert Syndrome, which has affected nearly every
bone in Evan’s body. His head was
misshapen at birth, he had hydrocephalus, his fingers and toes were fused, and his spine
is curved. He is hearing impaired
and wears glasses with a strong prescription, and almost always battles respiratory and digestive challenges.
This picture is from 2005, preparing for Evan's first finger and toe surgery and just days later his first cranial surgery. This would be the first of many surgeries to come.
moment Evan was born I was thrown from the role of expectant mom into the role
of health care manager and caregiver.
I was completely unprepared for this new role.
that moment I have been searching for resources to guide me through my daily
challenges. Along the way I have
found some good resources, but most of the time I have felt like a one-woman exploration team finding my own way,
alone, through uncharted territory.
Just as an explorer documents each step of her journey, I have been documenting
my experiences. My primary reason
for doing this is to make other parents' journeys a bit easier. Why reinvent the wheel? If I have an experience or knowledge
that someone else could benefit from, I want to share it.
health care manager and caregiver are still roles that I carry out daily, I am finding
that special needs educator more accurately describes my life these days. I am searching for ways to assist Evan
as he learns how to read, write, and be a cooperative family member.
This picture is Evan last summer - getting ready to fish (one of his favorite activities).
I have discovered is a life that is richer and more meaningful than I ever
primary goal with this blog is to share inspirations, affirmations and
reflections on parenting children with special needs - especially those children with special health care needs.
see this as a place for parents to find some fresh motivation to keep moving
forward with their journeys. This
includes discovering new resources to be health care managers, caregivers and
special needs educators.
It also includes remembering to care for and
to nurture yourself every day, in order to have the inner resources to keep
your compassion does not include yourself, it is incomplete.”
- from Jack Kornfield’s Buddha’s Little Instruction Book.
have found inspiration from many sources.
Peace comes in many forms and different ideas can speak to me, depending
on my needs. Followers of the Buddha are masters at meditating on ideas that can bring peace. Jack Kornfield is an author who has
brought me peace on days when I thought there was none to be found. Follow this link to his Meditation on
look forward to continuing my journey online through this blog. I also look forward to hearing from you, the readers, the other exploration teams out there forging their own paths. Please share your inspirations, affirmations
and reflections with me. This is a
life worth sharing.