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April 2013
Dear Naperville Seasons Hospice:

Our brother Joey Stoffregen arrived to stay at your hospice in late March of this year. We had no idea of the life changing events that were about to unfold…

Joseph John Stoffregen was born on February 6, 1966 in Oak Lawn, Illinois–the fourth child with three older sisters. Joey was born with Down’s Syndrome and in those days Down’s children usually did not live much past 6 years and they often did not live at home. Our brother never lived with us but visited frequently. My mother never considered abortion (today 95% of Down’s children are aborted). I’m here to tell you I am eternally thankful my brother was here on earth for his 47 years. Because of Joseph, an incomparable depth of compassion was born in our family–one that reached across generations touching many. For one example–Joey inspired two of his sisters and three of his nieces to enter into the special education field–but there are many more to share.

Joe grew into his life starting in Misericordia Home for the Disabled in Chicago, then Dixon Children’s Home in Dixon, Ludeman and then Sandberg near Park Forest and last Alden East in Bloomingdale. We’d see him regularly on weekends and then as we grew up, less frequently but for holidays and periodic visits. He knew 10 signs to communicate as he never fully developed speech and most of those signs centered around food. He was always happy to see us–we were never sure if it was because of what we brought (McDonald’s and ice cream) or just because whenever we came it meant a party. It got to the point where we’d sing Happy Birthday every time we visited because it put Joe into such a holiday spirit. He’d smile, laugh and clap signing “happy,” “hamburger,” “fries,” “cookies,” “pop” and his favorite, “ice cream.” Occasionally, if the treats weren’t forthcoming fast enough, we’d see “more” and “eat.” Rarely did we see the sign for “sleepy” and if he just couldn’t eat any more, we might see the sign asking us for a “walk” outside.

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Joey’s life was not all sunshine and roses….he used to be able to walk and at one of his early group home experiences lost that ability due to either accident or abuse. It was something we could never prove, but the event relegated him to a wheel chair for the remainder of his adult life. Then lack of care claimed his teeth so his beloved food had to be pureed. Still, he would feed himself and looked forward to eating three times a day. On our visits, we replaced McDonald’s with mashed potatoes and gravy, pudding and his all time favorite–ice cream with chocolate sauce.

Then came the day when his last joy was to be taken–Joe was hospitalized with aspiration pneumonia. While we, his two guardian sisters (Nancy and Sheri), were talking to his doctors at Glen Oaks Hospital in Glendale Heights, we realized he could only survive by having a feeding tube. We agonized in prayer over a decision that would not take from him his last pleasure. Smelling and seeing food he could not eat would be torture for him but eating anything by mouth could eventually end his life. That brought our family to Seasons Hospice in Naperville.

Seasons Hospice was new to Naperville having only been open 3 weeks when Joey arrived. Within 24 hours, we felt we were becoming family to the staff. The nurses Michelle, Sheri, Sharon and Jacinda along with many nurses aides such as Lordes and others attended Joey and us with such patience, compassion and tenderness. We felt as if communal arms rocked us in our grief as we held a bedside vigil for his last days.

He was cared for so tenderly that even when we were not there, we felt he was loved. The social worker, Rich, was a constant source of inspiration feeding us both spiritually and physically (one morning with an entire McDonald’s breakfast when we couldn’t bear to leave Joe’s side)! Our hospice family did what a good family would do–hugged us, let us cry without judgment and offered encouragement in the face of incomparable sadness. Even the doctors who were so busy spent much time with us giving us the best they could in sharing their knowledge so we would know what we might expect moment by moment.

Joe enjoyed ice cream 4x a day, signing over and over until he would fall asleep. Joey’s last few days enriched all of us spiritually. He led us (nieces and nephews, sisters and brother-in-laws) down a path closer to Our Lord than anyone else could have. We held hands and prayed with both Rich and the chaplain. We brought a little lamp to offer a softer light in his room and it was in that peaceful place we sang many songs and hymns with the gentle music therapists. The day came when Joe gave us his last sign–the one for “ice cream”–and it was then he fell into a deep sleep. A couple of days before he passed, he surprised us by opening his eyes and looking at the corner ceiling–his small mouth turned into an “O” of awe as he shared by his expression that he was seeing something he’d never seen. We then were treated to the biggest toothless grins–so wonderful we all spontaneously laughed–which of course brought more grins. And then that was all. Joe never responded again after that. It was as if he was saying, “I now know where I’m going and I’m ready.”

The day before Joey passed, Sheri and I smelled the unmistakeable scent of roses. It permeated the room as if to say, “I’m OK, sisters, I’m walking in the garden with Jesus and I’ll wait for you there.” Less than twenty four hours later he was gone.

In barely a week, Joseph John Stoffregen witnessed to many in his room and many who were thousands of miles away but were blessed to hear about him–he changed the spiritual lives of several people without saying one word and he is still affecting change whenever we share his story.

God is good.

That’s our “Joey” experience we wanted to share with you–our Seasons Hospice Family. In thanks for your love and care of Joe and all of us, we present you with 14 small lamps to be placed in the rooms where other families will gather to send off their loved ones. We want them to have a little of Joey’s light in their lives from his family who will always carry his love in ours.

Joey’s Sisters

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