- Meet Consumers/Patients
My name is Sarah Higgins. My family members include my husband, Bud, and our twin sixteen-year-old boys, Trevor and Dashiell.
Both boys were born prematurely. Unfortunately, Dash faired poorly as a neonate, resulting in the loss of two-thirds of his small bowel and brain injury. At present, Dash still has a Broviac catheter, G-tube, and colostomy.
One spring afternoon, when the kids were around three, Bud and I took them out on a double-stroller stroll. We were feeling pretty isolated as many of our friends had kids—all “typically developing”—and the banter never strayed far from, “What are your kids doing now? Walking? Solid foods?” We began to avoid these conversations that rendered us crestfallen.
We are New Yorkers, Manhattanites. When living on a tiny island, in such finite space and among infinite humanity of every ethnicity, street conversations, and, okay, occasional arguments, are unavoidable. We found ourselves sometimes more comfortable with strangers—kind strangers. Dash had tubes emanating out of his little jacket and his brain injury caused his eyes to cross, so he got a lot of looks. But countless times those looks were not ones of pity; rather we’d see glances of understanding, potential camaraderie, or empathy. These were the strangers who became our friends.
On this day, we headed towards Broadway on 102nd Street to grocery shop. Shaded by an apartment building awning was a beautiful young mother smiling down at her daughter, who was riding up and down the sidewalk on her Big Wheel trike. Tableaus like this would give us a pinch of pain, as our kids were not yet easily showing their development. Bud and I are only human, however, and this little kid had beguiling, Mediterranean blue eyes. When the sun hit them they were filled with diamonds.
I exclaimed to the mother what a beautiful child she had. She graciously thanked me. Immediately she, the stranger Mom who eventually became the friend Valerie, stooped down to greet our boys. Grace and compliments cascaded from her mouth as she got smiles from Dash and Trevor.
Then the three adults started the classic quick, overlapping conversation. Speaking of intimate topics, I think, also comes fast on our streets. We shared with Valerie about the early birth and Dash’s ensuing problems. She hesitated. Then she asked, “Have you ever heard of the Oley Foundation?”
Strange name, I thought. Is she asking me to join something irrelevant to our often mired lives?
“I have an ileostomy,” she continued. Valerie uttered this with gravity, but she trusted this information into our hands. She knew we knew what this meant. She explained that the foundation is nonprofit and assists people nationwide who contend with all things tube, catheter, and somehow related to problems with receiving nutrition. She spoke of an equipment exchange, personal stories, and the respect that physicians, nutritionists, nurses, administrative assistants have for their consumers. Oley expected nothing in return. No obligations. If you could, donations were appreciated but this was not required to receive guidance. She spoke of the boundless help she was given, from tips about appliance care to conversations about the stigma of the appliance. She confided to us it had caused problems in her marriage but she had a larger community, through Oley, that often anchored her.
When we parted, I really thought I wouldn’t bother. I was definitely in my blue period, grief-stricken by our enormous responsibilities. I thought it would hurt less to isolate ourselves, as to reach out would remind me of how abnormal we were.
But I no longer was able to push against our reality. I either needed to embrace it, still honoring my sadness, or be crushed beneath the weight. I called Oley.
I spoke first to Cathy Harrington, who is wonderful, helpful, and current. Then the newsletter started arriving. I truly could not believe other people endured things that we did, knew the terminology, and through their writings suggested methods of improving our and our son’s quality of life.
We even trekked to Robin Lang’s house (a former Oley volunteer who lived in Maine). Blessed Robin, whom we lost last year, welcomed our whole family after a three-hour phone conversation. What trust and generosity. She helped enormously, as she was so seasoned in the use of her myriad devices. She is so missed.
Our communal experience with Oley has been virtual and face to face. I have sent copies of the newsletter to countless friends who live lives similar to ours.
My gratitude—our gratitude—to the organization cannot be quantified. It is deep, meaningful, medical, emotional, and loving.
If I were in fifth grade, I would end my assignment with: And that is why I give money to the Oley Foundation. I’m not a fifth grader. I’m a fifty-plus-year-old Mom. And I would like to end this letter of love with: And that is why I give money to the Oley Foundation.
LifelineLetter, March/April 2011
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week