Hard, but Good: Kh. Kelleylynn Barberg

Describe an event in your life that was hard, but good. What happened?

July 16, 1999, six days after his second birthday, our eldest son was diagnosed with unilateral retinoblastoma (a rare pediatric eye cancer); within days his right eye was removed to save his life. While that hardly sounds “good”, he lived and is now statistically a Cancer survivor because of a radical and precise operation to save his life. Thank God!

Our faith in Christ was stretched, tested and eventually, in time, strengthened to “Trust in the Lord with all your heart…” Proverbs 3:5. As young parents we were forced to dig deep into our souls and truly “see” our own willful control for starters, because what parent wouldn’t do anything to save their child’s life?

How did you feel about this event while it was happening?

 In the first hours, we panicked, gathering all the knowledge we could –before Google–about Retinoblastoma; we were obsessed. We had to stop reading. It was all too much. We cried then.

It all seemed to be a horrible dream we hoped to wake from. As the grief of it all set in, we hugged a lot, stayed home, and had meals sent to us by friends and family. From a Friday receiving the horrible diagnosis and through the weekend, to Tuesday’s operation (yes, that fast!), I would not let our son out of my sight, until my sister insisted I rest alone. It was there I faced my deepest pain. The doubt already set in, making way for fear to choke me. In that despair, I cried out to the Theotokos. All was a blur, but she came to my aid, and I fell into a deep restful sleep, to begin again. I relied on her aid for the weeks to come: to sleep, eat, get dressed, and care for our son and myself. I hardly remember those days. I believe that is a grace.

What meaning did you see in the event after it happened, as you looked back?

Honestly, we’re still accepting this meaning & gaining understanding. Sometimes it makes sense, I don’t know how to actually explain this, it just does–how are we exempt from suffering?

Now 21 years later, overshadowed by years of living; adding more children, several moves with a career change; my own mother’s passing, that deep scar resurfaces, nagging us of that painful day–a reminder of how close our baby boy touched death and how out of control we were to stop it–helpless to change the course, if it be God’s will. Sadnesses are intertwined; they’re a beautiful visceral mess either bringing us to our knees or to insanity.

We could not have done this without the Holy Church and the guidance from our Spiritual Fathers; we came to trust in the church’s prayers, the great skill from doctors, nurses, and complete strangers. We accepted help from our friends, family, and our extended supporting parish-family. The outpouring of their loving presence covered us and held us together. It humbled us; gave us how-to life lessons of becoming a healing presence for others.

Our boy is 23 years old now; played baseball, football, soccer, and graduated college virtually unscathed, while there were moments in the tumultuous teen years and continuing growing pains into adulthood, we place our son’s life in God’s hands. We are often reminded, most especially as he grows into adulthood, to enjoy him. We can be hard on our son, being the eldest, where we easily forget that we could have lost him to this rare and terrible cancer. But he is not ours to lose.

We realize that God is in EVERYTHING, and much like the Old Testament story of Abraham to Isaak (this is our son’s middle name). we make an altar of prayer, giving the gift of our greatest sacrifices, our children, back to the Creator; in accepting this, even with much trepidation, we are also comforted that our precious children are not ours to begin with and that they truly belong to our Heavenly Father.

How has the memory of that event affected other areas or choices in your life?

Today, it is our son’s journey to find the meaning of it all; he struggles to find this understanding in other areas separated from “he had cancer.” The daily struggle continues to push and pull at him; there we place our cares in prayers.

Once in awhile, he will share glimpses of memories from those days but assures us nothing was ever drastically sad for him growing up. We are the ones who remember. We are still affected. We can still be sad. He never was, not at 2 years old anyway. So, we take his lead, if he isn’t sad, then how can we be?

Yet, he is a young man struggling in an ever-growing Godless world; that is a challenge. He prays for God to give him “sight” and discernment to choose; together, we carry on trusting the process, making room for God’s will.

A beloved holy Mother at a monastery we love to visit (and we stumbled upon a few months after our son’s cancer) once gave us a gentle lesson:

“Never feel sorry for your children, love them, correct them in this love. Do not pity or make an easy way out for them. Let God take care of this in their lives.”

We are left with prayers. We are compelled to love. We endeavor to mend, again and again. We ask for forgiveness; there is the meaning of it all. These are our choices.

What one piece of wisdom might you share with someone else living through a similar experience?

I can pass on what my dearest friend gave me. She asked me if we had talked to our son about what he will have to face with his surgery. It honestly did not occur to us, since he was just 2. And we told him, “Tomorrow, good doctors will be with you and nurses you can trust will take care of you. They will remove a big boo-boo from your eye. And you will be okay after it’s all gone. You can bring your favorite stuffed animal (Elmo); Mommy and Daddy; Hannah and your friend Grant and all your family will be right there waiting for you.” He looked at me as if he understood every single word and hugged me. That was so comforting. We cried.

After the 6-hour surgery, we were able to see him and while groggy coming off anesthesia, this beautiful boy looked at me with this enormous bandage wrapped around his head (see picture-that’s my father with me–which was another painful beauty, for another day) and said, “Hi Mommy! Boo-boo eye all gone!” and went back to sleep. We cried again.

Be gentle with yourself. Accept help. Be honest and talk it out. It’s okay to cry, no apologies.


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