There isn’t much you can say about a person who lived only three months, as our youngest two children did. We will never know if our little ones were funny, or shy, or adventurous. We have no idea if they would have inherited Brad’s sports genes or mine, my artistic eye or Brad’s not-s0-great eyes. There is one thing that anyone who knew them can attest to, however. They were stinkin’ cute. Objectively.
This was one of the strange paradoxes we lived with in the case of both babies. With Peter it was shocking, as he looked like a totally normal child up until the moment we saw him all wired up in the PICU. Who could have known, with their naked eye, that this little cutie was fussy not due to a long car ride, or reflux, or colic, but because the cells in his liver did not make enough energy to keep it functioning. As we sat in the waiting room of the ER at Children’s, there was nothing of our son’s outer appearance that would lead us to believe that he would be dead in five days.
Since we knew that it was a possibility that Gianna might inherit the same Mitochondrial disorder that took her brother, we were much more intently focused on her from her conception. We knew much earlier that we could not go by looks, so testing was done shortly after birth and then at two months. This lead to a very different, but equally odd, experience of appearance. She was absolutely beautiful (objectively, of course!), and again, did not look sick. There were times when I enjoyed this immensely. During our first two admissions to the hospital, I routinely took her up to the cafeteria with me, or to the family lounge and even once to Mass. No one could tell she was the patient. While we were home, I got complements about her from strangers who had no idea that a risky liver transplant was the only hope of her living to four months old. I enjoyed the break, the opportunity to pretend for a moment that we were a normal family who worried about nothing more than getting a little more sleep. I also think her cuteness scored her some extra points with the hospital staff. Not that these dedicated professionals would ever mistreat an ugly baby, but several did comment that she was much cuter than the average critically ill child, especially on the floor we were on. I took motherly pride in the way they doted over her cute outfits or lingered in our room to hold her.
Gianna’s cuteness also made for some painfully ironic (and often awkward) moments. During her first hospitalization, when we were slowly trying to come to terms with her likely prognosis, a nurse’s aide came into our room to find me weeping. Supposing that I was a hormonally unstable, overwhelmed new mother, she said, “new babies are really hard, aren’t they?” A perfectly compassionate thing to say! “No, she’s dying”, was all I could get out.
Two days before her death, on her way to the OR to get a pic line placed for easier blood draws, a doctor we didn’t know got on the elevator with us. “Well, now there’s a healthy one!” he said. The nurse and I looked at each other uncomfortably as she replied, “No, she’s pretty sick”. Other times, it was not the awkward one-liners that got to me, but the flip side of what I mentioned before. I could only pretend so long that Gianna was fine, because she wasn’t. Once, before our bad news was actually confirmed, I was grocery shopping with both kids, and could barely make it to the car before beginning to cry. The juxataposition between what appeared to be true and what actually was weighed on me in a deep, surreal way.
This line of thinking was brought up to me at a recent benefit banquet I attended for Prenatal Partners for Life*. The priest who gave the closing comments remarked that we all were born with a terminal illness: Original sin. The sick, he said, serve us all well as a reminder of this fact. His reflection made me think. In the spiritual order of things, many of us are my Peter and Gianna. We look fine on the outside, but on the inside we are dying. Sometimes, the comfort that comes with financial stability, good health, talent and long life can be dangerous to our salvation since they can lull us into a false sense of self confidence. Why would we have thought to ask our doctor to run a liver function test on our two month old son? All signs pointed to him being perfectly healthy. In the same way, many people never think to accuse themselves of sin because they seem to have everything under control. It just doesn’t occur to them. And as we learned in Peter’s case, undiagnosed illnesses can still kill you even if you don’t look sick. So it can be in the spiritual life, but for eternity.
With Gianna, we knew not to trust appearances. We looked inside, and found that something was indeed wrong. For Gianna, knowing early that she was sick did not end up saving her life. This is also true spiritually of those who recognize their own sin but choose to cling to it instead of bringing it to Jesus for forgiveness and healing. Although it sounds like a bizarre category of people, they do exist. They are those who despair at their own weakness, or who set out to fix it themselves.
Gianna’s doctors did their best to try and save her, and we did too. We gave her all kinds of nasty meds, drew blood from veins that did not want to give it, and did not give up on her last option (transplant) until it was painfully evident that she could not survive the operation. We availed her of all modern medicine had to offer, and modern medicine failed us. Gratefully, this is where my analogy breaks down. When we bring our sinfulness to Jesus, He never fails us. So many people offered to get tested to be liver donors for Gia, because they were willing to sacrifice even part of their own bodies to save her. That is precisely what Jesus did for us. Our hearts were so badly hardened and diseased by sin that we were wasting away. We needed a heart transplant, and that is what He gave us: His own heart. Of course, that transplant cost Him His life.
So next time we pass an elderly lady with oxygen, or a paralyzed man in a wheelchair, or a child with Down’s Syndrome, let’s thank God for the gift of those lives. More than that, let’s honor those beautiful souls by taking stock of our own. When we entrust our spiritual maladies to the Divine Physician, He never fails to cure us.
* For more info about Prenatal Partners for Life, an amazing organization helping parents of children with adverse prenatal diagnosis, infant death and disabled children, check out: www.prenatalpartnersforlife.org