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.

1 thought on “Living in a cup is half empty world.”

  1. Anonymous says:

    Dear Karen,
    Tears came to my eyes as I read your posting. It raises a multitude of feelings in me. I too am a mother of a child fighting a rare genetic life threatening disease, Sanfilippo Syndrome aka MPS IIIB. I also am the mother of two other ‘healthy’ children. Michaela is now 5 yrs old. It took three years of struggling in a healthcare system that is not favourable to rare diseases, in order to get an accurate diagnosis. The same system has basically sent us home to make the best of the situation and to prepare for the worst to come. MPS IIIB does not currently have any ‘treatments’ that are approved or proven beyond a reasonable doubt. Our daughter’s current future is filled with doom and gloom. She lacks a specific enzyme that is suppose to break down long chain sugars to be reused as the buliding blocks for other cells. Essentially these molecules build up and cause progressive damage throughout her body. Her MPS is especially devastating to the central nervous system. First she will lose language and her comprehension and learning skills. Then her mobility will decline leaving her wheelchair bound. Eventually she’ll need assistance with eating, swallowing and breathing until she lays unresponsive awaiting a merciful eternal rest. We are told that this process will take until she is in her mid-teens to early twenties. We, along with many other Sanfilippo parents, are desperate to fast-track current research which has the potential to be translated into treatment and perhaps a cure within Michaela’s lifetime IF we raise the needed funds to do so.
    This burden weighs heavily in our life-balancing act. At the same time, we are trying not to rob our other two children of their childhood. Faith is 8 yrs old and Aidan is 3. Sadly, My husband Glenn and I have absolutely zero support from our blood family relatives. We are blessed by the support of neighbours, some friends and strangers. This is wonderful but terrible at the same time. It adds to the severe feeling of loneliness. I know that I am not the mother I want to be and I can’t help it. The only thing that helps is living one day, one moment at a time. I work full-time though I’d rather be home. I dream of winning the lottery so that I don’t have to continue to dream of ways to raise funds. I cling to the hope that a miracle is in our near future. I pray that I will continue to not just survive but thrive and overcome the many obstacles that riddle my life. I wonder how long I will be able to keep all of this up?
    I know the pain that you must have endured and continue to experience in the loss of your son but dare I say that at least it only lasted 3.5 years and now you are free to be the mother you’ve learned to be for your beautiful daughter? I hope that my strength will bring me to the day when I can breathe easier and no longer feel guilty in wanting back the days when all I had to do was take care of myself and plan what adventure I’d have for the coming weekend.
    BALANCE–I’m so walking on the thinnest line life could present hoping not to fall one way or another and crush someone else on the way down.

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