There is no word in English equivalent to "widower" but pertaining to the death of a child instead of a spouse. I realized this today when my wife asked me over lunch if I viewed myself as the father of one or of two children. I replied that, firstly, that was an incomplete question because it depended on what one really wanted to know but, secondly, if I had lost an only child, there is absolutely no question that I would still define myself as a father. That's a role that defines you for life.
Why ask such an oddly morbid question? Because it is eighteen years ago today that I saw my son for the very first time and three months ago today that I saw him for the very last time.
I woke up this morning in Washington, DC, (this post was started Easter Sunday, April 8) where I met him eighteen years ago in a hospital that has long since closed. I was not there when he was born, though I arrived that evening. I had gone to a convention in Las Vegas, having asked my wife's OBGYN about the wisdom of going. He replied "She's not due until July fourth. Go." I was awakened by a phone call from home saying something was wrong and asking me what to do. I told her to contact two of her best friends and speak to them, then go to the hospital, and I'd get myself to the airport and get myself home somehow.
This was the latest stage in a long, miserably drawn out process involving fertility treatments, giving up when the next stage involved daily injections that still wouldn't get us to even odds; then attempting domestic adoption, with ads in the papers, the assumption of open adoption, and attending monthly support group meetings at the adoption agency solely in order to stay in their good graces. Fertility treatments and those support group meetings had one thing in common: a monotonous monthly raising of hope followed by the inevitable monthly smashing of hope, watching all the other couples get babies (including one on my wife's birthday), and finally getting The Call, then going to meet the birthmother only to have her miss the meeting because she'd given birth a day early and elected to keep her baby. Going through a process like that, you understand what it means when friends become pregnant and you want to just share their joy but it's difficult because of what the news reminds you.
At first, the fall-through seemed like just another blow, but within a couple of months, we discovered that it was in fact a lucky break, because my wife was pregnant.
That is perhaps the happiest news I have ever gotten.
But back to eighteen years ago:
I was at McCarran Airport, at the ticket counter talking on the agent's land line to one of the two friends, and the last thing I heard before I headed for the gate was that my wife's water broke.
In those days, some airplanes had phones built into the back of the seat in front of you. You swiped a credit card, spent an arm and a leg per minute, and made your call. Under the circumstances, I did, and the same friend at the hospital informed me that I had a son and that he looked complete. After I hung up the phone, I pressed the flight attendant call button.
"Could you please find out where we are at the moment?" She headed up to the cockpit and returned in a moment.
"We're flying over the Grand Canyon."
"Thank you."
I thought about saying something to someone but, for some reason, I elected not to. I kept the news to myself, landed at National Airport (I still have trouble calling it Reagan because of what he did to the air traffic controllers) and grabbed a cab downtown to meet my son.
They put me in a gown and had me scrub my hands for what seemed like ten minutes, then took me into the NICU (Neonatal Intensive Care Unit). There he was, in an isolette, which is what they call incubators now - a clear plastic ventillated box that is temperature-controlled.
There are three things I remember about seeing him.
The first is his size. Maybe size isn't the word; he was 3 lbs. 5 oz. Lack of size fits better.
The second is all those wires, plus he was wearing a hat to keep his head warm. There were wires all over the place, including one on his tiny finger that included some sort of bulb such that his finger glowed bright red. That one was for "sats," which indicated how much oxygen was saturating his blood.
The third was his actual appearance. There's one thing you probably don't know about premies this early: their fat hasn't come in yet. That means their features are more defined than they will be later because fat obscures features. We've all heard comments about how much a baby looks like someone in particular but, because of baby fat, that's stretching it. As my wife says: All babies look like Winston Churchill.
Not at three months early. Wires, hat, and all, if someone had set up a sadistic test for me and sent me into a room of a dozen preemies and said "Pick out yours," I'd have sweated bullets until I came to my son, at which point I'd have burst out laughing and said "OK. I get it. You promised it wouldn't be hard but I didn't believe you. I don't need to look at any more of them." I don't look like my parents to anything like the extent that my son looked like me.
Nothing about the process was easy or painless, not getting to the pregnancy, not getting through the pregnancy, not the birth, not getting the news a day or two later that those shadows on his head sonogram weren't shadows, not the nurses visiting the house checking to see if he was meeting his milestones just to find he was falling further behind each visit and in fact never hit most of them at all, not the first half year of still being attached to wires and oxygen at home; none of it. And that's just the early parts; surgeries, scares, seizures came later. We dealt with it all.
It didn't need to be easy or painless, though; it was, after all, parenthood. It just needed to be gratifying. Gratifying it was. When he first smiled at different things and we became aware that someone was actually home; being proven right was a wonderful thing. I saw parents of other kids my son's age who had cerebral palsy but were barely responsive or not reponsive at all; I have no idea how they did it. When he fooled around with communicating with me in different ways, whether it was learning Morse code and speaking in dots and dashes (he never finished learning all of it but he got pretty far), or throwing in phrases he'd picked up in other languages, or spelling things, it was cool to see his mind work. It was fun to watch him ham it up, even if he did it during services, sometimes especially when he did it during services. It was gratifying to hear him say if I took him to McDonald's that we should pick up something for his little sister so she wouldn't feel left out, even though he mostly found her annoying. It was really cool to hear him tell me the name of a pitch; he seemed to have perfect pitch, which I don't have, though I can hear musical intervals as well as anyone I've ever met but I still need a reference pitch. It was fun to spell words to him at hyperspeed - being a New Yorker by upbringing, I can speak very quickly, and I can spell at speeds approaching an auctioneer, but as fast as I spelled for him, he'd understand it in real time; I can't interpret incoming letters at anything like the speed I can say them, but he could. It was amazing to watch him go through his Bar Mitzvah, jaw-dropping really - I'd been with him through every step of learning and studying because I had to be, but it never dawned on me what it would look like when the whole thing was put together, when for all practical purposes he led a service in another language from memory.
My son gave me a major gift, though unintentionally. I was pushing forty when he was born but, as old as I was, he still managed to give me my adulthood.
As exhausting, frightening, expensive, worrying, and all-consuming raising him was, and these were true far more than with typical parenting, where all these adjectives apply to begin with, raising him was infinitely preferable to not raising him, which is where I am now. He's forever frozen at 17 years 9 months. He wanted to vote, but those three months are forever insurmountable.
I never forget that he's gone, at least when I'm awake. I don't expect to see him, hear him, any of that. I don't experience that momentary relief followed by crushing disappointment. I don't expect to see him.
I just want to.

Salon.com
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peace and my hand on your shoulder tonight. May you see him in your dreams.
may peace come and sit on your shoulder like a dove.
You were blessed to have this son...
r.
I am glad I read this. I noticed `alsoknownas`
`
He's a blogger who rated you. I enjoyed this.
I sighed too. What a powerful mix of emotion.
I reread you. Your conveying inner treasures.
`
I flash-backed . . .
`
Please. This next thought can be ignored.
It's a peculiar manner I've practiced. Stress.
If my 'seat of raw emotions' the human heart.
Heart . . .
That's a word with inner-feeling. Your heart.
`
ignore . . .
the banter
It's light hearted
`
ditching his date
after she ask the waiter
for goat cheese soup
`
there's a mix of emotion
it's not necessary to convey
its to reveal and also conceal
`
Thanks
You be a great conversationist.
Seriously
`
urn gadget on
and then off `gin
a editor is so ill
Stahi, you're right about dreams. I remember dreaming about him a couple of times, the last a few nights ago. Those dreams are happy. Oddly, life without him is not so much sad as it is just odd. (That came out redundant, or symmetrical, or both.) Disorienting. It's hard to explain how I've really accepted that he's gone and not exactly accepted that he's gone simultaneously. The result is I'm not as sad about him as everyone around me, even though I was as close to him as anyone else; he felt extremely close to his mother but for logistical reasons I was with him much more.
This is heartbreakingly beautiful. It changes your perspective that you do not focus on your loss but on all you and your family gained from having such a wonderful son.
My thoughts and prayers are with you and your family.
DOAHSS,
The thing is, I have no idea why I don't focus on my loss or how I got there. This wasn't a huge conscious effort that I'm aware of.
doing that and it has been 15 years for me. May peace reside in your home and may you find rest in your sleep.
Being who you are, you will of course reject this finding as too highfalutin for your tastes but that's who you are so that's only to be expected.
r./
Everyone manages their emotions very differently. It doesn't have to be a conscious decision. Your focus says much about who you are as a person.
I think it really helps in the healing process when you focus on your love for the person. Keep your focus on your love for your son, and I think your heart will heal in time.
"R" multiple times over (if I could).
Lezlie
Alan,
Actually, I've wondered the same thing. While there's always more one could have done, I left so little on the table that I don't feel guilt at all. There is no "if only I had" because to go much further would have been to leave myself either exhausted or resentful, either of which would have produced a worse result for my son. I can honestly say I did not shortchange him. One can always make the case that I have shortchanged others in my life in one way or another but a reasonable case cannot be made for my having shortchanged him. He got a huge piece of my life, and I never regretted giving it to him. And, actually, I suspect that has a lot to do with why I'm not sad like I'd expect to be.
"Outcasts" strikes me as not quite what we're looking for.
Nerd Cred,
I meant see him during this lifetime. On one hand, I know that whatever faith I have is just that and I could easily be wrong. On the other, I feel a little better when enough coincidences pile up. I don't like talking about those because it sounds like I'm building a case when I'm not or, if I am, not for external consumption.
This is a very brave remembrance of the positive, with nary a word about the hurt, which is there to see between the lines. I have suffered some grief in my life, but nothing next to what you are bearing. Such grief never leaves us; the only hopeful thing to say is that the pain diminishes over time. I salute your admirable courage.
P.S. I feel the same about Washington National. Add to that Orange County (CA). I must have been born without some typical American gene, because the typical American hero to me is an anti-hero. Why not Albert Einstein and Mohandas K. Gandhi airports? Perhaps that would cheapen true greatness; maybe having an airport named after you is really a kind of insult, to be reduced to a label on an impersonal hub of commercialized moving to and fro. Perhaps there is some comfort in that thought.
One July I flew over the Grand Canyon. I was travelling with my son when he was about thirteen. The captain announced that we were flying over--but he didn't mention how long it would take. We flew and flew, for twenty minutes, over the enormous break in the earth. I could not believe how it went on. Knowing its history, its infinitissimal mutability, I was struck by its powerful eternal quality. What a fitting place to learn of Jonah's birth--in the heavens above the eternal changing of the planet.
I believe you will see Jonah again in this lifetime. He will make himself known to you in a way that allows you to understand it is he. The essayist Scott Russell Sanders writes about his father being present as a red tailed hawk--and the instantaneous recognition in Sanders' mind and spirit. My father, too, showed himself as a hawk. I do not know how a child would make himself known to a father, but I feel sure it happens, and that you will reunite with Jonah in this life perhaps in this way.
And so many here are right--when you do the best that you can and know that to be true, then be at peace. Peace, Kosh. And rated for your courage and reflection.
I have no clue why this stuff happens.
TGD,
I hope you're right.
In some ways, I feel looked after. I've been disoriented but I haven't felt the incredible sadness I keep expecting; thinking of my son doesn't usually make me sad. Sometimes. Maybe it's the sheer number of people praying for us, maybe it's my kid watching over me; I have no idea. People in my wife's office still send her home with a meal once a week. My wife is way sadder than I am. I can watch the video now without the sharp pain I felt when his death was recent. Sunday was harder, but still not awful, He was on my mind, of course, and I needed a way to deal with that, so I wrote a post.
I was part moved to remark on your remark that your wife is a lot sadder than you ... for reasons I'd thought to keep out of the online backs-and-forths and pm you about eventually. I do still think those parts of my many feelings and reactions about this long valiant tale of the both of you (and your J, too!!) don't really much belong here on your blog. But having gotten stuck by my own keyboard ineptitude here: Is there anything any of us can do to help and be supportive to your wife, also? SUCH a long, difficult, tale to try to sort out on a website, no?
Thinking of the both of you (and your other son too) muchly,
LL2's comment, outcasts, no, doesn't feel quite right but I think I understand her meaning perhaps, that sneaky little feeling, the reverse end of "there but for the grace.." that parents of lost children might think other parents feel when they're around you?
Your special gift Kosh, the ability to speak to the 'laymen among us' on any subject (it seems, I have yet to see a subject you can't address with clarity) so that we can actually feel in spite of lack of personal experience. I wonder how much of this gift is one given to you by your son.. perhaps a bit of natural talent that your shared communications honed near razor sharp :).
I think it's pretty clear from the comments just how well your occasional self-reflections are appreciated..
Rated for nothing self-indulgent here.
Firstly, you can PM me any time you like. Secondly, thanks very much for the question, though my wife uses her own community on Facebook and steers clear of mine on OS, though again, I really appreciate it.
Seer,
That comment is appreciated on multiple levels. It is probably the best compliment I can get as a writer because, in my case, that's essentially my holy grail and pet peeve all wrapped into one: either be clear or it's pointless.
It didn't occur to me that "we became aware that someone was actually home" would convey what it did, though "someone home" is always the phrase I've used to describe the phenomenon in J's case. Why it applies is because cerebral palsy is in essence a brain injury, not a disease or genetic condition, and as such you worry about where the brain was injured. A neurologist had told me that he was unlikely to have cognitive difficulties but we hadn't done enough medical checking to know what to expect in detail, because when an MRI was offered to us I asked the only question I thought was important: "Could this have any value at all in terms of treatment rather than just of prediction?" was answered "no," I saw no point in eliminating hope. So, I knew it was unlikely that we had a cognitive issue but, still, you feel better when you're sure. I hadn't up to that point but I have since seen what people look like when someone isn't home, at least not in the way I mean, mostly expressionless and nonreactive. The way I normally describe my reaction to J's CP is that I didn't need a kid to throw a football with but I absolutely needed a kid I could talk to.
Did he give me my clarity? Probably not, though he helped me focus on it more and he gave me many more places to apply it. Lezlie told me she'd like me to turn talking about J into some sort of series and I'm realizing that this suggests topics, not always where he's the specific subject but sometimes where he launches the experience that I talk about.
It was a different world and, for the most part, not one we occupied as part of a community. Because a lot of J's peers were cognitively impaired, they didn't interest him, so we didn't spend time with other families in anything like our position, except perhaps at summer camp, though that's an entirely different situation and subject. So, we went it alone and, I suppose, I did a lot of reinventing the wheel. I've discussed a little of that on OS before, like the whole Airline Alphabet solution. A weird isolated example: I discovered by accident shortly before he died that Chinese porcelain soup spoons worked better for feeding him soup than conventional spoons did. Conventional spoons spill out the sides, but the Chinese spoons are like tiny ladles with a spout at the front, so they sort of pour into the mouth but in small enough quantities not to cause choking. My world was full of that sort of thing.
So now I've got to go get ready for a couple of business appointments in which I'm going to have to apply my clarity thing to a very different context. A manufacturer I sell stuff for once tried to get me to take a PowerPoint on the road in a laptop. I hated the idea; in fact, I found it sort of insulting. My sales manager tailed me at a trade show one time while I led a customer through our booth and explained the product, which took a lot of technical explanation. (It was a line of specialized loudspeakers for commercial use.) At the end he just looked at me and said "you don't need PowerPoint." N9 sh..... kidding. My guys know me for doing my best explanations on bevnaps over lunch. (Did you ever watch a show called Numbers? Kind of like what Charlie did at one point every show, but with fewer graphics.)
Anyway, thank you. Gotta go.
r
You portrayed a beautiful son, an incredible human being, and a wonderful relationship between you. So much love. I am so sorry he is no longer here. My deepest wishes go out to you and your family for whatever helps you cope with your loss.
Thank you. I'm glad I got that much across and I appreciate your support.