‘We belong to a club no one wants to join’
Sick child’s family finds help, friends in Boston
She can’t remember the exact moment it happened, but as Jen Buchheit noted, “It’s amazing how quickly your new becomes your normal.”
Already the mother of three rambunctious little boys, she was so at ease carrying Joshua, now 1, that she barely took note of technicians’ reactions when an ultrasound in the 20th week of her pregnancy revealed a bit of fluid on one of his kidneys.
“I was almost nonchalant,” she said, “until they left the room and my husband, Ryan, whispered, ‘Something’s wrong.’ ”
What was wrong was a condition known as hydronephrosis, a body’s inability to properly drain fluid. The Buchheits soon left their Virginia home, rushing here to Children’s Hospital.
That was in January 2017. While Ryan returned to Virginia, Jen remained in Boston until Joshua was born in March.
By that time they were talking about a kidney transplant, dialysis, and even the unthinkable possibility Joshua might not survive.
As Ryan, 36, began exploring the feasibility of donating a kidney, they authorized the harvesting of their son’s organs if that was where their path took them.
Their new had indeed become their normal.
“When you first arrive you’re walking into a whole new world,” Jen, 34, remembers. “You see Hasidic Jews, Muslims, Amish people, blacks, whites, parents whose kids have progeria, all kinds of situations we’d seen only on TV.
“At first you wonder, ‘What am I doing here with all of these people?’ I’d be looking into the windows of other patients’ rooms as if I could feel their sadness. Then I thought, ‘They’re probably looking into ours thinking the exact same thing.’ ”
In that world she never knew existed, Jen found it was populated by pretty special people.
“I became friends with a young mom whose daughter needed a heart transplant, and with another young mom who came to give birth knowing something was wrong with her child. That second mom wrote a note to the first, offering her child’s heart if things went badly.
“There’s such solidarity in sadness.
“I never could have imagined a child of mine needing someone else’s organs to survive, but when Ryan and I realized how dire Joshua’s situation was, we signed those donor papers because if he didn’t make it we wanted to know his life really mattered.”
The stories these young families share are heartwrenching.
“They’re awesome people, but I wish we’d never met,” Jen said. “We belong to a club no one wants to join, but thank goodness it’s here for those of us who need it.”
Through it all, Ryan did what he could to maintain a semblance of normalcy back home in Virginia, but now they’ve all moved here.
“What a trooper he’s been,” she marveled. “He deserves an award just for being home alone with the boys. He’s an awesome father.”
Supported by parents and siblings, sustained by their Southern Baptist roots, Jen and Ryan have learned what it means to live a day at a time.
But this Friday evening they’ll get some needed laughs when another group of newfound friends holds a fundraiser for them.
If you’d like to contribute, you can send a check to The Buchheits at P.O. 87, East Walpole, MA 02032.
“I’ve spent lots of hours in tears,” Jen said. “And I’ve found you can get both weaker and stronger in your faith at times like these.”
She chooses the latter, clinging to one magnificent hope.
“It’s the hope of every mother,” she said. “I just want my boys to have sweet dreams and do great things.”