Two weeks ago, doctors told Erik and Diane Roberts that nothing more could be done to save their 21-month-old son, Ryan, who was born with Down syndrome and a heart defect. Ryan had the first of four surgeries at four days old, and has since suffered a series of setbacks that made him a frequent patient at Children’s Hospital of Pittsburgh.
His hospital room “looks like a damn toy store,” Diane says. “We have a Jeep in here!”
The gifts, balloons and well wishes have been pouring in. But after Diane posted an update to her Facebook page sharing that she and her husband made the decision to issue a DNR — Do Not Resuscitate — order for their son, everyone wanted to know what else they could do.
No gifts. No cards. No more stuffed animals.
Instead, “Go out and create a memory with your kid. Throw a banana split on the table for dinner,” Diane says. “Wouldn’t you remember having banana splits for dinner one night when you were a kid?”
Smiles have been easier to come by than one might expect for Ryan’s family. On his 21-month-birthday last week, he shared a beer with his dad. (A root beer, that is.) He got his first Steelers tattoo (press-on) on his left arm. He borrowed a bicycle from a kid down the hall to take his first spin (with dad helping to hold him on the seat). And when Pittsburgh police officers visited one day to make him an honorary officer, they issued him his first speeding ticket — for driving that toy Jeep, of course. It’s all part of the “bucket list” of experiences his parents made for him.
"He is usually pretty happy. He has the best smile," Diane says.
Some days are better than others. One day this week, he was feeling “icky,” but recovered enough to reach for his mom’s cell phone and give her a high-five. She calls him “Superman” and “rock star,” and some other names, too: “We have a lot of nicknames for him, it depends on the day. ‘Cause he can be a pain, too. I’m just being honest!”
Doctors can’t say how long Ryan will live; on June 6 they gave an estimate of “weeks.” His dad’s response: “OK, 752 [weeks]!”
Their best guess, Diane says, is a couple of months. Until then, she’ll keep sleeping on the hideous fold-out couch in Ryan’s hospital room and saving her tears for the hallway. Erik will keep driving the two hours from their home in South Fork, Penn., every weekend. Their 4-year-old daughter, Rhylea, will keep asking why her brother’s heart is sick.
And strangers as far away as Norway, Canada, Italy and Paraguay will keep eating banana splits.
"You take for granted that your kids are going to be there a lot longer than they are," Diane says. "You can’t take tomorrow for granted."