No Boundaries

He loved the show Yo Gabba Gabba and his older brother Andre. He smiled and laughed all the time, even through many episodes of pain. He was his mother’s joy and love, and she fought so, so hard to get him all the care he needed. And he said his goodbye to his family and died in his sleep early on Monday, February 4. He was only 4 years old.

We never met Gabriel, or his gentle but fierce advocate-mother Constance, or his 8 year old brother Andre. They hail from El Paso, Texas, but are one of the eight families of children with Schwartz-Jampel syndrome (SJS) who have reached out to us over the years. Constance was different though–unlike so many of us these days, she picked up the phone and called us one weekend. It was a bit of a shock to get a phone call out of the blue from a woman wanting some advice about her son with SJS. She must have called at just the right time because I was able to talk to her for a long time–about some hernias that Gabriel was experiencing (Ben had these at age 18 months, too) and what treatment would be like for them; about respiratory and lung issues–Gabriel already had a tracheostomy; about what I believed was a patent ductus arteriosis–“hole in the heart”–a condition Ben had and eventually outgrew and which Gabriel may have had; and about Gabriel’s eating issues and whether he needed a g-tube to help him thrive.

Gabriel in 2012

I was able to contact our dedicated Johns Hopkins Medical Institute physicians, Hal Dietz and Ronni Cohn, who recommended that Gabriel seek care at Texas Children’s Hospital–and then, in their true, generous spirit, they invited Gabriel for consultations at JHMI. I relayed this information to Constance, but it was too much for her family to undertake a trip to Baltimore. Gabriel’s health issues never took even a small break that would have allowed significant travel.

Constance and I continued to be in touch via email, but we hadn’t connected since last November. But on Tuesday, she called to let us know Gabriel had died. On Friday, while we in the Northeast were hunkering down during a blizzard, I called Constance in sunny El Paso, after two days of visiting and services for Gabriel, to talk about all the wonderful things that Gabriel brought to this world. We also talked about what I had missed: Gabriel had undergone surgery for the g-tube, which wasn’t successful, and had been hospitalized twice for pneumonia, the last time in January.

But the night before he died, he was apparently fine. Gabriel squeezed his mother’s hand on Sunday night, told her that he loved her, and she went to bed lying next to him, feeling that warm squeeze. In Constance’s words, though, she awoke in the middle of the night as if something had hit her, realized instantly that something was wrong, and turned to check on Gabriel. His body was lifeless. She performed chest compressions until the paramedics came and took Gabriel, Andre and Constance to the hospital. Andre, sobbing, was saying, “Please don’t die, you’re the only brother I have”.

Gabriel was pronounced dead before the sun rose.

With tears streaming down my face, I listened to all of this. What can I or anyone say? There is nothing worse in the world.

Forget all the aches and pains I feel today after shoveling out from our blizzard. Forget that I have deadlines to meet and projects to get done and which I am behind on. Even forget that I get up every night to take care of Ben–a common undertaking that Constance and I shared. Because I have the gift of being able to get up; Constance does not.

As a friend, the mother of a child with a mitochondrial disease once said, when people asked her how she could be so happy when taking care of her sick son, “How do I know that this isn’t my bliss? Maybe tomorrow will be worse”.

Right now I am in my bliss. Constance’s tomorrow is worse. I will embrace this day, and every day, because I can.