...carefully buried and seldom visited in the depths of my soul where I stuff the things I cannot face right now, or maybe ever again. Having that place keeps me sane, lets me laugh, allows me to go on each day, because I don't have to carry with me out in the open the memories of the worst pains a parent can be asked to bear. But today, while reading Liz Lamoreux' blog post:
inspired by :: one good thing ::, I found myself sitting at my computer stunned by the need to force back hot, saltly tears and to choke down sobs that amazingly wanted to race from my throat - because her story threw open the door to those least visited memories - and the knowledge that I've been in that place that Liz describes as she waited in the hospital for news on the heart surgery on her 5 week old daughter, and I've also stood in the place Mandy did when she lost her daughter, Hudson.
I understand these women, and their spouses too, I suppose, in ways that only someone who has walked those paths could ever really know.
Almost without thought, an urge arose within me to write to Liz and Mandy to say: "I know, I understand, I've been there. You're not as alone as it may feel." But as I began to look for email addresses, or "Contact Me" buttons, and with my message already being composed in my head, I thought about their choice to write on their blogs about their pain and their fears - to share them publicly and to use that sharing as an aid to healing. And I wondered ... perhaps, just perhaps, I might better respect their choices by posting of my experiences, rather than just showing up in an email and dropping my story on their doorsteps. I thought, too, about how Liz's post and both their stories had affected me, how I had felt immediately that I had two new friends "out there", people I could talk with and share with, people who would "get it", really get it. Maybe someone reading this could find in it something of their own experience, something of their own pain. So here I am.........no, here we are........
Lara was our third child, following an older brother and sister, both of whom were under 5 when she was born. She was born with a condition known as microcephaly - which means small (micro) head (cephaly). It is a neurological disorder where the head circumference is less than it should normally be in an infant or a child. In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. But we didn't know all of that in the beginning, we just knew something wasn't quite right with Lara's development, and we ran from doctor to doctor and hospital to hospital for tests and examinations and consultations, for good news if we could get it, or, later, for any news they would give, all to no good purpose. Nobody could tell us why Lara was microcephalic, nor were there any treatments available at that time, nor any really good idea of what we could expect for her as she got older, if she got older.
As it turned out, Lara was never to see her third birthday. She was a poor eater from birth, and given to bouts of projectile vomiting, when she would spew out all the formula her mom had spent long and arduous hours sitting with her and coaxing her to drink. Of course, our two other children were young and demanding, but even so my wife would gather herself together after each vomiting event, clean up and sit back down with Lara and try again to get her to take, and keep, some nutrition. Frequent chest infections were also common, and many of these required that she be hospitalized for days, or weeks, at a time. Often the fluid and phlegm that accumulated in her lungs and bronchial passages would block her breathing completely, to the point that it was necessary to insert a tube attached to a suction pump into her throat to clear her airway and allow her to breathe. This became so common that we had to buy one of those machines and learn to use it ourselves, which was so common that it sat right next to her crib in our room during those times when Lara wasn't in the hospital. Finally, her body could take no more, and, when she was 2 1/2 years old. one night Lara died in her sleep, at last finding peace herself, but leaving a hole in our family that never would be filled. And, despite our best efforts to support each other, Lara's mom and I drifted apart after her death, until finally the marriage ended only a few years later. My two older children stayed with me.
Devon was my stepson, who came into my life - also at 2 1/2 - when I married his mom after my divorce. But he quickly became just another one of my children, and he grew up alongside his older brother and sister, with all the normal bonding and fighting that siblings get into. I could tell you a lot about Devon, his ADD, his terrific sense of humor, his struggles in school all his life, lots of things. But it's enough to say that together we got through the tough times, and enjoyed the victories, and he grew into a fine young man, and a reasonably happy one at that, although I think he'd have liked to have been in a continuing relationship - to have a regular girl in his life. On Christmas Eve, 10 years ago, Devon left a family celebration at his older brother's house and headed home. It wasn't overly late, and he hadn't had anything at all to drink at the party, but just an hour after he left, the police called with the news that he had apparently lost control of his car and driven into a wall on a local highway. He was taken to a local hospital, where he was pronounced dead.
The injuries Devon received in the accident were not fatal ones, and it was not immediately apparent why he had died. Only later, after an autopsy had been performed, did we learn that a bout with flu he had a few weeks earlier had led to an infection of the heart muscle and valves, which did so much damage that he had succumbed to a heart attack on the way home that night, at the age of 27, and just at a time when so many aspects of his life seemed to be coming together in ways that were exciting and promising of more good days.
So, Liz and Mandy, I understand. I remember those days waiting in hospital lounges and stalking the hallways for news and test results. I recall "dinners" that consisted of vending machine coffee and M&Ms. And I will never forget the long, long nights, both during Lara's illness, and after her death, and Devon's, when it seemed like the sun would never come up, and sometimes when I didn't care if it did. You both seem to be doing very well, despite your pain and your fears, and I commend you both for your choices to make the stories of your children have meaning and value beyond your families, especially your decision, Mandy, to commemorate Hudson with the One Good Thing movement, and your decision, Liz, to help.
I can tell you this, today is good, today I am at peace, even with the long visit to my memory stash that your stories dragged me into. I miss them both, still, and the wounds of their loss have never fully healed. But they don't bleed anymore, and they normally don't ache, except at times like this, when I pull them up into the light and spend time with them again. But they always are a part of me, a part of who I am and how I became this man. And for that I'm grateful ...just for today.
Warm sun on a cold morning, strong, black coffee to start the day, the promise of a fun time with a granddaughter tonight. Miracles all.
