Even in the hardest moments, John says he’s learned to look for the goodness that keeps showing up.
“If you don’t find the good, things can go bad for you really fast,” he said.
The past two years have brought one blow after another for John, his life partner, Bethany, and their family, whose names have been changed to protect their privacy.
The Berks County couple are raising three children — 9-year-old Emily, 4-year-old Mia and 6-month-old Timmy — while weathering a series of medical storms that upended nearly every part of their lives.
It started last year when John, a construction worker, was injured on the job. Struck by an excavator, he suffered a perforated disc and nerve damage in his lower spine. The injury required surgery and left him in constant pain and unable to work as he continues to heal.
The family found renewed hope and joy with the birth of little Timmy in spring. But from his earliest weeks, something felt off, Bethany said. The baby cried constantly, struggled to settle and seemed in pain.
“As experienced parents, we knew something was wrong,” John said.
But each time they raised concerns to Timmy’s medical providers, they were told it was colic or just normal infant fussiness.
Things came to a crisis in September, and they rushed Timmy to Children’s Hospital of Philadelphia’s King of Prussia campus. Doctors there quickly transferred him by ambulance to CHOP’s main hospital.
After 10 days of testing, they finally had an answer, and it was devastating. Timmy was diagnosed with a rare genetic brain defect.
He may never walk or talk or live beyond childhood, doctors told them.
Just six days after that initial hospital stay, a respiratory illness caused Timmy’s airway to partially collapse. The tiny boy landed back at CHOP for another 47 days, and was placed in palliative care, the step before hospice, John explained.
The emotional toll has been heavy, he said, but so has the financial strain. Though nearly all of Timmy’s medical care is covered, the family faces increased daily expenses and lost wages.
Still, John and Bethany are hopeful.
“God has blessed us and made sure we are OK,” he said.
Often those blessings come in the form of the family, friends and even strangers who reach out, offering home-cooked meals, play dates for the girls, carpools and other assistance.
“Every time we turn around,” John said, “someone is trying to help us.”
One of their biggest hopes this season is to give their kids a joyful memory that isn’t shaped by hospitals and fear.
“We just want memories that aren’t medical,” John said.
Both girls, their parents said, have handled the chaos with more grace than most adults could manage.
A grocery gift card or help with holiday shopping through Operation Holiday would ease some of the strain and allow the family to focus on creating those precious moments of togetherness.
“It’s little things like this that keep popping up that, you know, just give us reassurance that everything is OK,” John said. “We are blessed that people keep showing up for us. It’s been really touching in some of the worst times of our lives.”
Operation Holiday
Operation Holiday was started in 1991 at The Mercury in Pottstown to help families going through tough times provide something for their children during the holidays. The mission of the program is to make sure there is food on the table and gifts under the tree when Christmas morning comes.
Now in its 35th year, the program has served thousands of families throughout Berks, Chester and Montgomery counties, expanding its reach in recent years to include communities served by readers of the Reading Eagle, The Times Herald, The Reporter and Daily Local News.
Nearly $85,000 in donations last year provided gift cards to 366 children and grocery gift cards to 189 families plus cash donations to food pantries in Berks, Chester and Montgomery counties.
This year, Operation Holiday has partnered with 21 agencies in the tri-county area. Agencies have referred 199 families with 403 children for gifts and food.
There is no overhead with Operation Holiday and all funds stay local. Funds are collected and audited in a nonprofit foundation account managed by staff of MediaNews Group who volunteer their time.
Gift cards to area grocery stores are provided to each family for food so they can purchase the fixings for a holiday dinner as well as staples for the pantry. Weis Markets is a partner with Operation Holiday and has assisted with food purchases and gift cards.
Gift cards for every child in the program 16 years of age or younger are purchased through Boscov’s and distributed in partnership with the referring agencies so families can purchase gifts of their choice.
Operation Holiday does not accept families who have not been referred by an agency. Operation Holiday is funded solely by reader contributions. All contributions are tax deductible.
How to donate
Online donations are being accepted in a secure portal in partnership with TriCounty Community Network. Visit tcnetwork.org and click on the link for Operation Holiday.
Contributions also can be mailed with checks payable to Operation Holiday to P.O. Box 1181, Pottstown PA 19464; The Reporter, 34 Susquehanna Ave., Suite 100, Lansdale PA 19446; Operation Holiday, 1440 Lacrosse Ave., Reading PA 19607.
The names of all contributors are published in the participating newspapers as donations are received. Please note whether a contribution should be designated as anonymous or given in tribute or in memory of someone.