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Kelly - My Hero In BlueKelly was forever my hero. Soon after her passing, I sat in front of my easel and envisioned what she looked like. This painting was the genesis of my visual dialog.
The DiagnosisThat sharp moment in time that defines the future.
How Do I Care for Someone I Don't Care AboutA completely honest emotion. My sister was 16 years younger than I, and as adults we lived different lives. When she moved in with us, I saw my life change completely. As I pulled away the curtain which was my facade, I had to admit I held anger in my heart.
The Sun or the ShroudAs a caregiver, I had to decide the attitude of our shared future. Would I help my sister live with this disease, or die from it?
The CaregiverEvery waking minute, as a caregiver, my sister was the focus of my thoughts.
DenialThe 'tradition' in my family was to camouflage this illness as something 'acceptable' to the outside world. Denial holds a person tight within a facade, unable to be portrayed as they truly exist.
The AdvocateAt times I had to become a warrior for the benefit of my sister. With all the passion I possessed, and all the strength I didn't know I had, I pushed forward or back - whatever was required - because she couldn't.
No AnswerIt is those dark moments, when all the doors are closed, that as a caregiver, all I prayed for was an answer.
New RxWith each new medication, there was hope.
A Thousand IndiginitiesThrough the daily effects of the disease, the cruel insults of society and the awful push and pull of family, I looked into my sister's beautiful blue eyes and marveled at how much love there was.
Daily RxThe daily medication kept the symptoms minimalized but over the years, it changed who she was.
GuiltGuilt...a heavy coat to wear....
It's Not Her...It's The DiseaseAs her symptoms began to dictate her physical and psychological persona, the real person slowly receded. I knew, though, she was still there..I looked into her eyes and found her.
GratefulThere are those very special people who come with the heart and the intelligence to make such a difference in the journey of a caregiver.
Reason Gives Way To Schizophrenia...My voice, reminding her of reality, was drowned out by the constant voices in her head.
I Thought He was Not With Us Until He Cried...My brother was unable to speak due to the affects of Huntingtons Disease and blind due to glaucoma. Was he still with us? The answer came one day as we spoke of fond childhood memories. He began to cry. THE POWER OF THE HUMAN SPIRIT....
Family - Who Cares, Who GivesIt was a point of serious contention on who 'cared' for my sister, a back and forth, that was a constant strain.
UntitledSo many days, I was speechless at the turn of events.
I Don't Carry the Gene, I Carry the LegacyLiving with a disease and living through it, are two aspects of the same path - a family story.
What Do I Do With All This AngerAnger was my companion, I just could not bury it deep enough within me.
ForgivenessIn all the decisions on behalf of my sister, I continue to forgive myself for being human, not perfect.
Courage, Wisdom, AcceptanceThe Serenity Prayer
I Don't FitWhen I tried to take my sister's picture at one point in those early years, I remember she said, "I don't fit in the picture". I came to realize that she began to see those physical changes in herself, and she may have felt that she did not fit into the norm any longer, and all she could say was "I don't fit in the picture."
No FartherIt is that moment when as a caregiver, there is no longer forward momentum. That precious life that has been held for so long can no longer be carried.
Love Was Not Enough But Love Was All We Had....and still do. I miss my sister Kelly.
Recovering PurposeAfter her passing - recovering a purpose for my journey.
Space for JoyKelly taught me. In each day, ever so small, there is a space for joy. For her, it was a plate of mashed potatoes.
TodayKelly showed me. Living in the now, living in the day, was what she had. It was her simple truth.
Hope"We have this hope as an anchor..." Hebrews 6:19