I overdid playing with Vesta today and my lower abdomen starts to ache so I lay down on the couch and stare out as I am wont to do these days: seeing but not seeing, thinking but not thinking, crying but not crying. The mail carrier drops the mail into the slot, leaves a package and rings the doorbell. The photos of Harvey taken by a volunteer professional photographer have arrived in a small, yellow padded envelope. I know what it is before I turn it over. I am both excited and dreadful. Also in the box: several insurance bills, one in Harvey’s name.
The photos are a DVD slide show and a CD of images to be printed or posted to the web. There is a personal note from the photographer, a flyer for the organization (Now I Lay Me Down To Sleep), and the discs each in a cardboard sleeve with the logo and his name. The whole thing neatly and thoughtfully wrapped in a cotton string. The discs have his name, Harvey Walker, written in beautiful script. I put the DVD in and my computer won’t play it. Constantly loading. I insert the CD and click through each image file. I look at the professional photos of my beautiful, dead son. Made to look not like a brain dead newborn but instead a tiny, sleeping cherub. “This is what he really looked like” I tell myself. It’s surreal because it’s a picture of my baby, the one who looks like his big sister, I would recognize him anywhere, except it’s not what he looked like. My baby spent the last 39 of his 40 hours connected to 8 beeping machines, taped up, poked and prodded, tubes coming from seemingly every opening and thick needles piercing into his veins and even an artery. The baby in the picture has skin all one perfect color, the irritated skin of the upper lip from the tape retouched out, the tears dripping from his always closed eyes and yellow mucus from his nose and mouth removed. The baby in the pictures looks like a baby that would come from the combination of my husband’s and my genes but he does not look like the baby we held and loved and lost in the hospital. The baby in the picture is a rare, tangible reminder of exactly what we are missing. Reminder is not the right word, because we never forget what we are missing. But there he is in perfect, infant form, even the red splotchy birth mark at his “third eye” retouched, the mark shared on his sister’s forehead too, like we never saw him but should have.
Also in the mail are what we receive seemingly ever other day, for both Harvey and my recent medical needs and hospital stays, and affectionately call the “This is not a bill” bills. Each report from our insurance company, in large black and white print above indecipherable charts of tests, consultations, inpatient services, radiology, neurology, imaging and their associated costs, how much Kaiser is paying, and how much we will owe when the “Bill” bill comes, are the words THIS IS NOT A BILL. But it will be.
One is addressed to Harvey. This is the first piece of mail that he has received with his name on it. Until now, the bills from the two ambulance rides and the first hospital were addressed to “Baby Boy Walker”. We had a short list of names and were waiting to have him in our arms before we chose one. Though I knew it was Harvey for months. The ambulances and the first hospital didn’t have his name because he didn’t have one yet, because it was a flurry of chaotic activity, because my husband could not be comprehended through his terror and despair.
I didn’t get to the NICU for several hours after he was born and missed the ER and the ambulance rides. My best friend wheeled me into the NICU, all broken and battered and in shock, and someone said, “Here is Harvey’s mom.” and it was a like a beacon of light in the darkest of storms. I woke up for a minute, lifted my head out of my shock induced paralysis, and my heart swelled. He named him Harvey. Our son has a name. For the first and last time in his short little life, someone called me “Harvey’s mom”. I’ll always be Harvey’s mom, but never so much as I was in that moment, when a stranger said it out loud. Despite the sadness in her voice, someone said it out loud for the first time. The first time I heard his name spoken, the first time I was called his mom.
Yes, here I am. I am Harvey’s mom.
I was basking in that light when my husband came from Harvey’s room, weeping, to find me sitting in the wheel chair beaming. I smiled a huge smile at him and exclaimed “You named him Harvey!” I had such joy in that moment, such affection for my husband, for us, or little family of four. But I quickly saw as he stumbled toward me, not able to get there fast enough and not ever wanting to arrive, that this greeting to my husband, who spent the last 5 hours in his house shoes with his unresponsive baby and his fear of what was happening to me, was inappropriate.. My husband fell into my arms in absolute despair and Harvey’s mom and Harvey’s dad wept and wept for him. Danny told me later that he had never been so relieved to see me but never wanted to see me less for the reason for the reason of my arrival. That we were in this hospital, this NICU, to be with our son as he lived his whole life and then as he died.
I open the “This is not a bill” bill and see that his inpatient costs were upwards of $40,000, the pediatric neurologist’s consultation and subsequent visit were hundreds of dollars, that there was radiology and other line items. That Kaiser paid over $25K and that the “patient responsibility” is $2,500. There will be more not bills and more actual bills in the days that follow but this is the beginning of knowing the cost of life and the cost of death and the incredible unfairness that we must empty our savings account with nothing but broken hearts and empty arms to show for it.