Every now and again, a heavy dollop of perspective smacks us right in the face. I had one of those moments the evening of February 19.
My wife and I attended the Sweethearts Ball, a fundraising event for South Bend’s A Rosie Place for Children, the first — and only — specialty hospital in Indiana for children who are medically fragile. The hospital helps with the most complex pediatric conditions and provides a unique home-away-from-home experience where children can sleep over in a safe, nurturing environment.
We were invited to the ball by Christine and Dave Simper, great friends who experienced the heart-wrenching loss of two sons afflicted with cerebral palsy. Matt and Joe were beautiful, smart, and wonderful boys who captivated classmates, family, friends, and anyone who met them. I honestly don’t know how the Simpers function from day to day, knowing what they’ve been through. Like their sons, they are truly amazing people who have survived the nightmare all parents dread. Twice.
Most of us attending the Sweethearts Ball stepped outside of our cushy lives for a reality check. We were introduced to the Quiana and Rashon Davis family who benefit from the services provided by A Rosie Place. Through a powerful video shared with the audience, they took us on a tour of what they go through every day as they care for their medically fragile daughter. The family was there as well so we could meet them in person. Their presence drove donations through the roof, to say the least.
I worry often (okay, almost constantly) about our own adult sons and growing grandchildren, our finances, my job, the house, the world around us, etc. You know, the usual things that keep us awake at night. I have never had to worry about having to lift my grown daughter out of a wheelchair and into bed or the bathtub because she isn’t physically capable herself. I have never had to make sure the tubes that feed my son are clean and free of bacteria. I have never struggled to understand what my sons or grandchildren are trying to communicate, either verbally or simply with their eyes or body language. I have never had to clean saliva or vomit or other matter off my teenager.
The Davises and all the families featured Saturday face this every hour of every day and do so willingly because they love their child as much or more than we love our “normal” children. Their lives are more difficult than most, but so rewarding in so many ways. Want to talk about heroes? Look no further than the parents, teachers and caregivers of children with special needs. Below is the lovely invocation presented at the Sweethearts Ball, titled The Fourfold Franciscan Blessing:
“May God bless you with discomfort. Discomfort at easy answers, half-truths and superficial relationships, so that you may live deep with your heart.
“May God bless you with anger. Anger at injustice, oppression and exploitation of people, so that you may work for justice, freedom and peace.
“May God bless you with tears. Tears to shed for those who suffer from pain, rejection, starvation and war, so that you may reach out your hand to comfort them and turn their pain into joy.
“May God bless you with foolishness. Enough foolishness to believe that you can make a difference in the world, so that you can do what others claim cannot be done.”
This missive is long overdue in many respects because I have been exposed to many of these families for decades through my wife’s incredible career as a special education teacher. She worked for the former Habilitation Nursery School, the Lekotek toy lending library and finally for more than 25 years for the South Bend Community School Corporation’s SNAP program. I have been blown away by her compassion and skills since we started dating 45 years ago. She left an indelible mark on these children and their families, and I know everyone who had a chance to experience “Miss Kate” would echo those sentiments. She reminds me all the time that the families left a much larger impact on her and her fellow teachers. It was a thing of beauty to watch.
I honestly don’t know why that Saturday’s event and presentations bowled me over as they did. Maybe I finally sat down and focused, neither of which are easy for me. Whatever the reason, I’m glad I was there because my eyes, mind and heart were opened. I won’t say that my daily challenges don’t matter because they do. However, in the big picture, they pale in comparison to what these families battle. ALL THE TIME.
Perspective punched me in the jaw that night. I won’t lie…it hurt. But I can only hope it will help me realize how fortunate I am and how many hidden heroes live among us. I am awestruck by all of them.
If you’d like more information or if you’d like to provide support, please visit arosieplace.org, SBCSC SNAP Program on Facebook or any of the terrific organizations that serve our special needs community.