Tuesday, April 24, 2012

Independence Takes Courage

“It takes courage to grow up and become who you really are.” ~ E.E. Cummings

I might add on: “It takes courage to let your children grow up and become who they really are.”

Tuesday, April 17, 2012

Parent as Caregiver

“There 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 Carter.

The thing about being a caregiver is that I never aspired to be one.

Sunday, April 15, 2012

Caregiving with Quiet Strength and Focus

Beyond the normal parenting expectations, my child needs me to be his caregiver.  Learning how to care for his complicated health care needs has been the focus of our journey so far.

Thursday, April 12, 2012

Parents Need Compassion for Children 

and for Themselves

My 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.

The 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.

Since 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. 

While 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).

What I have discovered is a life that is richer and more meaningful than I ever dreamed possible.

My 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.  

 I 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 going. 

“If your compassion does not include yourself, it is incomplete.” 
- from Jack Kornfield’s Buddha’s Little Instruction Book.

I 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 Compassion.

I 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.