Parenting comes with so many tough decisions, it’s hard to keep track of all of them. In the course of our kids’ lifetimes, we’ll be confronted with realities that require us to put aside our own feelings of comfort and do what’s right for our kids. Fortunately for most of us, these will never be life-and-death-level decisions.
Some parents are not so fortunate. The mother of 14-year-old Jerika Bolen, for instance, has been tasked with a decision that is so heartbreaking, most can’t even imagine living it. But she is. Her daughter has a request — “let me die” — and her mother has decided to support her in that decision.
Jerika has a rare, progressive disease called spinal muscular atrophy type II. The progressive disease slowly destroys lower motor neurons — the brain cells that make it possible for a person to do things like sit up, walk, eat, talk and even breathe — and it is very painful. In the past, most people diagnosed with the disease have little more than two years to live, but in rare cases, they can and do live longer.
Jerika is one of those rare cases. She breathes with the assistance of a respirator and likely doesn’t have many more years to live. It’s why she has asked the people of her community to come together and celebrate her “last dance” at a prom that she hopes will celebrate her life before she removes her respirator and allows the disease to take its course. The pain is “too much,” she told a local news outlet. And her mother, Jen, who must now help her child through the last days and weeks of her life, has said that this day has been coming for a long time. She suspects it might have come sooner if her daughter weren’t set on protecting her from the pain of losing a child.
It is beyond heartbreaking, and it is the right thing for Jen to do.
Perhaps we can’t imagine it. We shouldn’t have to — burying a child is a tragedy and a distortion of the natural order of things. Jen shouldn’t have to imagine it either, and now she does, and it brings a heart-wrenching decision with it.
Would you keep your child alive if you knew the rest of their life would be lived out in unimaginable pain?
Jerika has asked to make that decision herself, and we can’t imagine a 14-year-old doing that — 14 years old is so young. It’s still just a baby when you measure those short years against the lives that most of our children will have the luxury of living. There are people who will say that Jen, as the adult, has the responsibility to talk her daughter out of this.
To encourage her to live a little longer. But there are two problems with that. The first is that by now, Jerika has had to take on the mantle of an adult. She has been through more in her decade and a half of life than any of us will have to experience in 80. The second is that, ultimately, to ask Jerika to live in pain is a little selfish. It’s love-blind selfishness that says our children should at least die natural deaths if they must go before us, but it would still be selfishness. Jen recognizes that. She is, no matter what anyone might say, a good mother.
Most of us will never have to be selfless in such a punishing, unimaginable way. And we ought to be glad for it and hold our judgment.
In the end, could you fight that selfish desire? Could you place the needs of your ailing child and the alleviation of their pain above your own? Could you help your child put on their finest clothes and celebrate their life with a prom that you had to arrange on your own because they’ll never live to see the one they might have if life wasn’t so unbelievably unfair? When it was over, could you hold their hand so they could take their last breaths knowing they are loved beyond measure and beyond comprehension?
Most of us don’t know. We’ll never have to know. But Jen does, and she’s willing to honor her daughter’s life and final request, and that’s what being a parent is ultimately about.