When our young family walked through Sophia’s progressive hearing loss journey, we were determined to show Sophia how her hearing loss story could become a gift to herself and others while the chapters of this story were being written. This is not unlike the recent journey with brain cancer and loss of Jon that resulted from it.
While it was a substantial loss to Sophia to lose natural hearing by the time she was 16 and was never an easy road as a student and friend, she became stronger, more confident, more determined, more assertive, more patient, more faithful and an exceptional advocate for herself and for those affected by hearing loss.
My mother traveled through life with her own hearing loss journey; I know for sure Sophia’s positive outlook gave my mom some thoughts on how to manage the difficulties. Sophia also mentored individuals and parents of young children on the benefit of cochlear implants and how to live without hearing in a world designed for those with the ability to hear. Not to mention, Sophia and our family fostered many incredible relationships and friendships born from her progressive hearing loss journey.
In turn, our family became a voice and an advocate to bring awareness to those affected by hearing loss. We created a sizeable dream team of many supporters who wore bright yellow shirts named Team Lebano, with Sophia’s desire to help others through her story.
Each year the hospital where Sophia’s hearing loss was managed, and she eventually had two cochlear implant surgeries to give her access to sound, held a family walk/run event to raise funds and awareness. Many loved ones and friends from our community joined our efforts and our team to support this cause.
I am reminded today that we made beautiful memories on May 22, 2011, the second year holding the title for the largest team, 105 members, and the most donations. That was also the year I was invited to be part of the planning committee for the event. The following year we included well over 150 people on our team.
I love when the feast days of our beloved saints collide with special events in our lives, showing us our friends who have gone before us are always looking out for us. May 22 is the feast of our treasured St. Rita. She is a saint known for impossible causes.
Jon and I would frequently visit the church and shrine of St Rita in Philadelphia after our many appointments in the city. She became a beloved intercessor for our family as far back as 2016.
Living with hearing loss in those early days may have felt like “an impossible” cause to overcome in some ways. But if you look back at the impact of Sophia’s decision to embrace this hearing loss and to show others how a deficit, a challenge, or a loss—however one might label it—can still become a gift. God’s plans don’t always match up with ours. But His plans allow us to draw closer to Him if we accept that call. Taking up the cross God asks us to carry can also be a model for others in their challenging walks.
If we embrace the challenges we are asked to carry as we surrender our trust and guidance to Him, God will get us through these things. I know Sophia and I have several times shared on our podcast and in our writing stories like this and a few hysterical moments about her hearing loss and moments we can find joy in the heartache.
This past weekend was the 15th anniversary of that Hear We Go Event in which Team Lebano participated for several years. In August, Sophia and other past ambassadors were asked to be a voice and face again for the Hear We Go Walk. The plan was for our family to attend, but our life changes did not allow us to join the family event this year.
Check out the page where you will see our shining star and recent college graduate who was the original ambassador for the Hear We Go Walk. Donating to this outstanding cause in our family’s name is still possible. While we could not attend, it would be an honor to our family if you would consider donating in our family’s name, specifically in honor of Sophia and Jon.
Speaking of honoring Jon
This past Friday morning, I received a call from a representative of the generous local business, Brandywine Valley Heating and Air Conditioning, who installed our family’s donated air conditioning unit last summer. Because cancer closely touched the lives of several people at Brandywine Valley Heating and Air Conditioning, they chose to become this year’s sponsor for the Luminarias, the memorial portion of the local Relay for Life for the American Cancer Society. This event was founded in 1985 to honor cancer survivors, their caregivers, and the memory of those lost to cancer. Please take a moment to read about the generous man and president of Brandywine Valley Heating and AC, Bill Ronayne, who wanted to help our family with the new air conditioner: Super Man with a Heart for Helping, an article that was published on April 28, 2023
The kids and I were invited to join the team of the generous, community-minded business team to remember Jon with a luminary. It was a very last-minute opportunity that the kids and I felt would be a memorable way to spend our Saturday evening as we sift through this time of remembering, grieving, and healing from all we have endured these last several months and years and most of all for the loss of my husband and their dad.
It was time well spent that touched our hearts in a hundred ways. I am still trying to unpack many things lately as we walk through loss, including that this walk and luminary lighting took place at the track where Jon and I spent many Sundays with our family and the beloved track team we coached together for several years. God’s handprints—and footprints—are all over this story we are being asked to walk.
I know our track days were a highlight of the early days of raising our family and living in this community. Many track team members attended the Hear We Go Events with our family over the years. It seemed all the tapestry threads were weaving together beautifully right before our eyes. Often what seems like little yeses we give in life are where we find the most impact and reward packaged up in neat little packages by God for us to unwrap or unpack.
There is much unpacking—physical unpacking and some unpacking of words and experiences—and packing to be don in this walk of loss and grief. Should it be God’s will, a post unpacking some of it may be coming sometime soon. There is so much about this brain cancer story that has not been shared, so much trauma and heartache, that needs to be healed. Sharing may take time or may only kept in the silence of my heart and/or our four walls for the kids and I to reconcile, restore and heal. Not all needs to be shared.
But how poignant it was to walk those steps on the hallowed ground (where Jon, the kids, and I spent so many hours together) once again as Bag Pipers filled the silent and sorrowful air with Amazing Grace as Jon’s name and photo along with hundreds of other cancer warriors names glowed in the dark on luminaries lining the entire track.
These moments are what help with walking through grief and loss.
As I walked that field with tears streaming down my face, I was not only thinking of my beloved Jon and how much beauty we built in our life or the courageous journey our family, especially Jon, walked, but I was also thinking of all of the generous people who helped support our family in so many ways.
We were asked to be open to receive so much, and countless friends, family, and strangers gave so much to us: Air conditioners, labor, financial support, beach houses, delicious home-cooked meals, bags of food to stock our pantry and fridge, rides and overnight care for my girls, gas money and airplane tickets and donations of trees and flowers masses offered in our family’s name and especially in the name of the repose of Jon’s soul, and most of all the generous, faithful prayers of so many.
We didn’t ask for any of it, but we only prayed God would provide and make a way through the hard days.
God used you with your “yes” when you accepted the call on your heart to support us in the last several weeks and the last several years, both with our brain cancer journey and hearing loss journey.
As I said, I am unpacking many things we have encountered and endured. I hope to put into words all that has been on my heart. We are carrying deep, deep sadness, but there is a peace that seems impossible to explain.
“With God all things are possible.” St Rita of Cascia said.
She is the patron saint of impossible causes. St. Rita is also the patron saint of many other things including loneliness, marriage difficulties, parenthood, the sick, bodily ills, and wounds.
She is also the patron saint of widows—it seems fitting that she has been trying to catch my attention these few weeks.
This post is dedicated to Jon, my beautiful husband of 25 years, my best friend of 33 and the most amazing father to our four courageous and kind children who everyday remind me of the amazing life we built. This is for you Jon for all you gave and all we walked together.
It is also dedicated to all of those beloved friends I know who have been touched by cancer. Today I am praying for and remembering you as I go take a walk.
And on a last special note, I want to recognize Erik and Krystal for the invitation and the special time spent with our family. We are forever grateful.