We all have heard of the cup is half empty/full debate. Last week I was meeting with a group of moms and this very topic was discussed. We all went around the room and stated if we were a cup is half empty or a cup is half full type person. As the moms were discussing I couldn’t help but feel a little out of place. This age old debate takes on new meaning when you are living a life like mine. After watching my little boy suffer for three and a half years fighting Mitochondrial Disease and after being by his side while he endured a slow painful death, it’s hard to view life as anything but half empty.
Living with a child diagnosed with a catastrophic illness is one of the most intense challenges a person can face. It’s the constant battle of trying to find hope and joy in life, while at the same time preparing for death. It’s a life filled with constant worries — is this just a fever or the fever that will end it all. It’s a life striving to give the special needs child the best possible chance to live a normal life and all the while trying to explain to the typical children in the family why Mommie and Daddy just don’t have the energy to play games at night.
As the women went around the room most stated that they were a half full type person, or at least that is what they were striving for. I started to get the feeling that most people viewed the other as a flaw or a less desirable trait. When it got to my turn I proudly stated that I was a half empty type person — and at that moment I felt every eye on me. I explained that even though most see this personality type as a negative, for me it’s just a reality. My life is full of half empty moments. I live in a half empty world — it’s who I am — it’s the life I have been dealt, and I’ve never been more proud of it.
As parents with special needs children living in a cup is half empty world fuels our intense desire for something more. It pushes us to see the potential hidden deep within our children, despite the labels that are so often placed on them. It fuels our ability to look beyond our current circumstance, the suffering of our children, and helps us to find the hope in hopeless situations.
I challenge us all to take our lives, — whatever life we have been dealt, and embrace it. Choose to see the amazing possibilities in what most consider an unfortunate circumstance. If we choose to see the hope and joy in all our half empty moments, we truly can live a life that is overflowing!
by Karen Owens
Karen lives in Philadelphia, Pa with her husband Adam and 5 year old daughter Madison. Karen and Adam lost their little boy Gavin at age 3 1/2 after an intense life long battle with Mitochondrial Disease.
Karen is learning to redefine normal after the death of her son, using her love of design and photography to reach out to other families dealing chronic/terminal illness or disability.
She is co-founder of “Chronically Cool Families” a parent to parent support group for families dealing chronic illness and disability. CCF is currently based out of The A.I. DuPont Children’s Hospital in Wilmington, De but Karen hopes that this type of group would one day be available to families across the country.
The Owens Family journey through life, death and finding life again can be found at www.gavinowens.com.