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| Sarah |
She cannot walk or talk. She receives nutrition though a G-tube, takes many medications and endures frequent seizures. Because of her fragile medical condition and severe neurological impairment, Sarah lives at New England Pediatric Care, a skilled nursing facility for young people.
The family has come to terms with her condition.
Gayle Pinshaw, mother: “I will always wish things could have turned out differently for Sarah, but I have accepted that she is safe, well cared for and as comfortable as she can be.
Sarah is more responsive to us now than in the early years. We enjoy that interaction and her personality, although we don’t know how much she actually understands about the world around her. When I speak to her, she seems to recognize my voice and she smiles for me and other family members. When I read stories to her – pre-teen books with plots, now – she often seems focused and intent.
If Sarah didn’t get sick, she would probably have finished college and be working and living independently now. I will always be sad for what we all lost.”
Julia Wicoff, sister: “I live out of state so I only see Sarah a few times a year. She seems to know me, so I sometimes wonder: if Sarah knows when we are there, does she know when we are not? It’s hard to think about it.
“I don’t think anyone would have guessed that Sarah would be this strong almost 22 years later, or that H.A.L.O. would continue so long.”
Working in the non-profit world I know it is common for families to start a foundation in honor of a loved one. It comes from a loving place, but it is unusual for it to last more than four or five years. I’m really proud that after 20 years H.A.L.O. is still looking for opportunities to help children and their families.
Medical care is not always what you wish it to be, so I am thrilled that Sarah is at NEPC, a facility that will take great care of her, no matter what.
Dan Pinshaw, brother: “It is never easy to lose someone you love. Sarah’s case was further complicated by the fact that we never really lost her, just lost the potential for her to live a full and pain-free life. I believe my family refused to make this her lasting legacy.
Looking back over the last 20 years, I am proud to see that H.A.L.O has turned a bad situation into an opportunity to help. There is always an opportunity to turn dark to light. Sarah’s life and H.A.L.O.’s contribution is a reminder of this everyday.”
