Friday, February 26, 2010

Imagine that

My father, Jim, as a baby, 1917
I have been ruminating a lot on age lately, how it is both such an inescapably binding and yet liquate and amorphous thing. Time marches our bodies physically in one direction only (science fiction speculations notwithstanding) and yet we retain all the ages we have ever been inside us. 

It is a hoary old aphorism that in old age we recapitulate a second childhood, yet bearing witness to it renders it with fresh sad amazement.  At least my children were out of diapers before my father moved into them.  That much sandwich, I think even I couldn’t take.

My father, as soon as he arrived home from the December hospital disaster, before we lost him into the folds of his mind, when he was clearly nearing the end, but still present with us, demanded that Bruce and Lois, my brother and sister, come to visit him, NOW.  He summoned them.  And was very clear he wanted them not just for a day, but for a considerable length of time, a real visit.  He had a lot to say.

No one ever said it out loud, but we all knew he wanted to say goodbye while he was still himself.  A wise move on his part. 

Because the visit was over a weekend, their presence allowed me to spend some much needed time with my children, who had barely seen me during my father’s intense hospital stay.  So I was not there with them while Dad talked and talked, somehow knowing his time with words was coming to an end.  Bruce told me that Dad had been dreaming vividly about his father and brother, dead these many years.

Although there was love there, he had never been close with his older brother, Alan.  Of vastly different temperaments and fortunes, they embodied the fork in my father’s family: one tine made up of artist dreamers and the other all ambitious businessmen.  My father the former, his brother the latter. 

His thoughts of his father were, as always, complex and painful.  His father had been rather a rat bastard, living with and supporting the family only sporadically, keeping another life, and presumably other women, in the city.  The one time he took my father & his brother out with him, into the city, he warned them: “I’m your Uncle, not your Father. My city friends don’t know I have kids, and I intend to keep it that way, so call me Uncle John.”

At 92 my father still cries about how he felt abandoned by his father, how he always felt less than the other boys he knew, who had fathers at home every night.  Whether those fathers kissed or beat those sons didn’t matter, theirs were there, his was not. 

I have been turning out drawers looking for old photos of Dad, thinking I’ll need them soon.  I’ve found quite few of the father I never knew – a dapper young man who wore suits with panache and a bowtie.  The father of my youth was a middle aged hipster, and then an old hippie.  I think he wore a suit once, to my first wedding, under protest.  But it tickles me to see him with blond curls in short pants.

I show the old pictures to Ethan and his brain can barely wrap around the concept: Grandpa was once a baby!  It’s hard enough for him to imagine his own parents as babies, children, teenagers themselves, in spite of the voluminous photographic evidence that supports such madness.  But that old man to baby transformation is just too much for him. 

Age is one thing to the body, quite another to the brain.  I remember my father saying to me, just a few years back, how amazed he is every time he looks into a mirror, to see an old man looking back at him, because in his own mind he still feels himself to be the same person he was at 20.  How can the mind have such coherence when the body changes so? 

The changes of age still baffle Ethan.  Used to the dictates of childhood: older = bigger, he is confused by this idea of old people shrinking, or why his father’s brother, his Uncle Jim, is shorter than his Father, even though Jim is older.   He thinks it hysterical that he will be taller than me and is counting the minutes till the magic moment.

“Will I be as tall as Daddy? he asks, hoping to cross that threshold of six feet.  “Who knows?” I answer, thinking “probably not, you will probably always be shorter than your brother”; thinking “let him have that one advantage please, don’t have to win everything.”   Ethan is one minute older, but Jacob was, and will likely always be taller, larger.  “Fair” I’d thought at their birth, “they each have one starting advantage.”

Knowing I was having fraternal twins I expected difference.  Little did I know what was coming down the pike. 

Jacob, too has a grasp of age and change.  He will look at old photos of himself and his brother and say: “That’s baby Ethan, that’s baby Jacob”  However, the size = age corollary has an even stronger hold on Jacob.  “Cocoa’s a baby” he keeps saying about our middle aged cat.  Seven pounds sopping wet, the boys were about her weight when born.  So he is right, she is baby sized.  But two years older then the he is, imagine that.

As I search for a way to take the ribbon of this post and tie it up into a neat bow for a tidy ending, I see how very meandering it has been.  Ruminative, I suppose, does not lend itself to tidy, and I guess that’s just the way it’s going to be today, with loose fringy ends all over the place.

Kind of like my life.  Imagine that.

Monday, February 22, 2010

Who needs toes, anyway?

For those who like gory medical details, you’re going to love this post; for those of you who waft toward the squeamish or are reading during lunch, I suggest you skip this one for now.

My father, at nearly 93, has the constitution of an ox… a team of oxen… no, make that a whole herd.  That old warhorse of a saying “whatever does not kill me makes me stronger” has suddenly taken on new and wondrous meanings with my Dad.  Take his toes, for instance - you might as well, since he’s losing them soon, anyway. 

The thing that started this whole last, latest, probably final crisis was the perfect storm of peripheral vascular disease and diabetically compromised circulation, combined with his critically severe aortic stenosis, which is officially his “terminal condition.” 

Due to all this, last October, he developed an infection in his left big toe.  This led to a toenail removal (gruesome, don’t ask) and a foot that seemed to be slowly healing, but then stopped and went the other way.  There was an anemic collapse and hospitalization right after Thanksgiving, then the discovery in early December that he had practically no blood entering his left foot at all. 

In order to save his foot, and therefore his life (since he could hardly survive an amputation), the vascular surgeon recommended an operation to open up the arteries in his left leg.  Four and a half hours into the two-hour operation, things went very, very wrong; pear shaped, to quote my Anglo/Australian friends (I love that expression, even though it also describes my body). 

To make a very long story a little shorter, he came home from the hospital much weaker and his circulation barely improved.  His toe was bad and getting worse, the problem spreading across and up his foot, too. This is when we were told to expect him to have days, maybe a week to live. 

Family flew and drove in, good-byes were said, his liver swelled up, his color faded, and then… he got better… again. 

His toes continued to die, due to lack of circulation, but to our utter amazement, they went into a state we had no idea existed: “dry necrosis”.  Instead of the pattern I had been walked through and prepared for: tissue death, infection, gangrene, sepsis, death (of which I have since learned is officially called “wet necrosis”), his body wisely chose the dry variety. 

So the toes on my father’s left foot are slowly turning black and becoming hard and dry, literally mummifying themselves while still attached to his foot.  For now.  If things progress accordingly, his toes will eventually become as hard as wood, then snap off, his body performing its own, non-traumatic amputation of non-essential, non-living tissue. 

How completely weird and weirdly wonderful is that?  His formerly swollen foot is now back to normal, and only reddened half way up. He is not in pain because the nerve cells have died, too. 

He is an ox, a whole team of oxen.  I should like to have his genes … oh, wait, I do!

Sunday, February 21, 2010

Raging against the dying

Ed, the wonderful VNS Hospice nurse didn’t want to tell me, but on Tuesday when he’d visited my father he thought he wouldn’t last the night.  Dad had been slipping for the past 2 weeks and was looking very ragged: sleeping all the time, no appetite, being confused and foggy when we did wake him up, his life lacking all coherence, now confined to a room.

Actually a few square feet of a room: his side of the bed, and the view out the window - a cityscape, vaguely west, their breathtakingly sweeping Hudson river panorama having been given up, along with their nominal independence when my folks left their west side apartment last May for the comforts of assisted living.

So imagine Ed’s surprise when he came on Friday to find Dad sitting up, slurping his soup with gusto and loudly longing for a beer to accompany it.  “He’s a lot stronger today” he told me with amazement in his voice.  Much experienced in the ways of the dying, he’s mostly seen people trundle off in one direction only.

That’s when he confessed that when he’d told me on Tuesday “He’s not doing so well.” He’d meant REALLY not doing so well. But, as I’ve said before, Dad is most decidedly not going gentle into that good night; he is going kicking and screaming and crying and dragging both feet, even if he ends up a few toes shy of ten by the end. He is, indeed, burning and raving at close of day.

He is being kept alive not by machines or miracles of medicine or any other state-of-the-art artificial means.  He is being kept alive by his own hugely strong ego, his spirit, his body’s memory of life and liveliness.  He is weak as a kitten: this formerly 6 foot, now 5 foot 10 frame gaunt and skeletal, his hands appearing like huge knobby mitts stuck onto stick arms: my Dad the snowman. 

I had once again taken the boys to see to see Dad “one last time”, because I knew my Mother was missing them and needed to see her grandchildren, the future.  Knowing the end is near, she will barely leave my father’s side, although all she does is cry and cry and she truly needs all the distraction we can muster for her.

So even though I had said we were done with all that, last Saturday found the three of us trekking across town.  We walk in the door, Ethan peeks into the bedroom where Dad has taken up final residence, and, never one to mince words, announces: “Grandpa looks dead”, refusing to go into the room.

Jacob on the other hand, autistic obliviousness on his side, bounds into the bedroom, and after a cheery “Hi, Grandpa!” proceeds to take over grandpa’s dry erase white board to draw happy smiling green suns.  We had been using that board to communicate with my deaf father, back when he could still decode written words.

For the past 2 weeks, however, he has squinted, looked at the writing like its hieroglyphics and waggled the back of his hand at it in the universal gesture of “take that away, it’s not for me”, so we have given up on communication beyond smiles, hugs, and gentle strokes.

Jacob then settles into bed next to my father, not noticing that his grandpa has no idea who he is, and pats him on the back saying “close your eyes Grandpa, go to sleep Grandpa” and “feel better, Grandpa.”

I’m not sure what’s making me cry more, Ethan’s blunt truth, Jacob’s sweet, cheerful care or my own deep, deep sadness that my father often does not recognize me, is losing his connection to us who are still his earthly tether.

And then on Thursday, when he’s “up” again an old friend, Gloria, comes to visit.  I had sent out an “If you want to see him to say good-bye, come SOON” e-mail to their few remaining friends, and Gloria had answered the call. 

Dad just lit up when she came into the room, clearly recognizing her, and so delighted she’d come.  He was able to stay awake long enough for them to spend time together, and she also had a long wonderfully distracting visit with my Mom.

Gloria had been Dad’s agent when he was an advertising photographer, and also his girlfriend for a while, before my Mom.  After she left, Mom suggested: “This has cheered him up so much, maybe we should find all of Jim’s old lovers and get them to come visit.” 

Once again, in spite it all, Mom’s sense of humor is still intact.  When that goes I’ll start to really worry about her. 

And because I’ve quoted it here, and it’s wonderful and relevant for me right now, here’s that Dylan Thomas poem, written in 1940 as his father was going blind:

Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieve it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Thursday, February 11, 2010

A blast from my past

Sick day + sick day + snow day = recycling day.  I hope you don’t mind, but I do want to keep this blog thing moving along, and haven’t really had a chance to write anything much, what with my gut exploding for two days, then the city transforming into a lovely snowdome today, necessitating hours of sledding and a home full of hot-cocoa fueled children.  I know me; if I let anything slide too long it just slips right off my plate and I will forget about it for an embarrassingly long period of time.  The gift of my ADD brain.  Did I mention that the apple doesn’t fall far from the tree?  Scratch your kid with a developmental difference and you will see a familiar flea jumping off. 

One of my favorite Autism books is Not Even Wrong by Paul Collins.  He is a wonderful, wonderful writer; a historian who has a son that he is discovering is autistic as he is being inexplicably drawn to researching the story of Peter the wild boy, possibly the first documented Autistic in English history, for his next book.  Talking with his mother he is reminded that he himself was once placed in special ed because of his preternaturally acute hearing which caused him to micro focus and/or tune out extraneous noise and/or tantrum when overwhelmed by the aural assaults of the world.  Apple and tree, apple and tree.

But once again, I am digressing. Oh, yes, today I am digging into the bowels of my computer, pawing through the snippets I’ve written over the past few years, and pulling out something that I’ve always been particularly fond of. 

This was written when the boys were just three and Jacob was much more Autistic than he is now.  My parents were living in an “independent senior residence” at the North edge of Riverdale, and much more spry than they are now.  Four years ago, but seems like a hundred: my children evolving, my parents devolving; I sometimes feel like the hub of an insanely spiraling merry go round.

So here is my “Balloon Story” written on September 10th, 2005, and posted on Urban Baby (remember THAT crazy site?) in response to a mother posting about a tough day w/ her Autism Spectrum Disorder (ASD) son:

Hang in there, we ALL have those days.  I had one today myself:  I went to visit my parents at their retirement community for "family day" with my 3 year-old twin sons. One is on the Autism Spectrum w/ a PDD-NOS diagnosis, the other is typically developing, even a bit precocious.   My PDD son was just having an "off" day - melting down over every little thing.  Usually he LOVES the bounce house but they would not let him into it until he let go of the pointy metal toy in his hand, and when I took it away he just couldn’t get over it. He kept crying & screaming "I want Mommy" even while I was holding him and I just lost it --  hissed "I am your fucking Mommy, now stop it" in his ear (NOT my proudest Mommy moment.)  OK, it turns out I was really pre-menstrual  (I just got my period in middle of night, which is why I am up and typing at 3 AM - waiting for Motrin to kick in so I can get back to sleep) so I have, maybe, an itty bitty bit of an excuse for that. 

And then there was my typical son who was just having the time of his life - enjoying his Grandparents, the rides, the other kids, playing and conversing away and I had one of those awful moments when I let myself think what if.   “What if they were both typically developing?” And I knew that this would be such a FUN time in my and their lives. Because my typical kid, while also a lot of work and an occasional total pain in the ass (like all little kids) is a HELL of a lot of fun at this stage, talking and commenting on everything with a great sense of humor, interested in the whole world, and trying to figure out how he fits in it.  And how much effort with so little reward EVERYTHING with my PDD kid is, just comes crashing down on me at those moments.  And the truly awful thing is that, for an instant, hating Autism spills into hating my son. There, I've said it. 

And then, of course, everything gets better, and he eats lunch and gets in a better mood, & goes into the bounce house & has fun. And even though he's lying on the grass spacing out holding a toy between his eye and the sun while his twin brother is getting his face painted while chatting w/ his Grandma, it's OK. And I remember that 5 months ago I'd been begging God to please just let him say "Mommy".  And at the end of the party we're the last family left, so my boys get ALL the helium balloons they've decorated the grounds with.  And while my typical guy wants to hoard & hold onto his, my PDD guy is finding total joy in releasing them one by one to watch them sail away into the perfect blue sky.  "Kite, Kite" he says and "Bye, Bye, balloon" and he even waves. And it's OK -- it's just MY family.

OK, that’s all for today.  I know it was supposed to be Ethan’s day, but he’ll just have to wait, which he just hates to do. And did I mention he has a touch of ADD, too?

Sunday, February 7, 2010

The next slice

I said I was going to talk about my children, but first (forgive this repeat, my Facebook friends) I just wanted to share this moment of levity from my Mom, who has otherwise been crying all week:  A bedside commode chair for my Dad arrived the other day w/ a tag that said: “Checked and working properly, and ready for use.” Mom read it, paused, then said “Let’s hang that on Jim’s penis.” With everything that’s going on, I’m very glad she still has her sense of humor.

OK, on to the kids.  Actually, this exemplifies what’s been going on at my house for some time: my kids getting the short end of the stick because my parents are just so damn needy right now.   For many people, when their parents hit this stage, their kids are older - teenagers or in college, maybe even young adults who can actually themselves be helpful and involved in their grandparents’ care.  Not so much over here, in the land of s t r e t c h e d out generations.  My husband and I each have significantly older siblings and between us 6 nieces and nephews who range in age from 27 to 35.  So our kids’ first cousins are all old enough to be their parents.  Hmmm.

I sometimes feel a little sad about this, remembering the amazing cousin conventions of my childhood. My Mother’s brother’s family was the one we spent the most time with, and I was incredibly close with his two daughters: my cousin Jessie, exactly my age, and Annette, 2 years younger. They were the closest thing to sisters for me, and I cherished the time we spent together.

But I digress.  Get comfortable with that phrase. If you’re going to follow this blog, you’re going to hear it a lot.  Straightforward, I am not.  But I do get there eventually, and isn’t the journey supposed to be half the fun?  My son, Ethan, told me I was crazy when I quoted this aphorism to him in an attempt to instill some serenity into a fraught moment.  He is a child of pointed passions and limited patience. If he had the vocabulary (and thank god he doesn’t, yet) his motto would be “screw the journey, let’s get there!” 

Jacob, on the other hand, is deliriously happy to be distracted by the myriad bright and shiny objects along his path; especially if they’re spinning. The journey is the whole point for him … was there a destination?  Unless, of course, we are going to the movies, then: let’s get the hell there and start eating some popcorn, please!

My boys are in 2nd grade, and I will be turning 50 this summer.  I am not the oldest mother in the world, but sometimes I feel like it.  And yes, they are IVF twins, and yes, it was my own eggs (for those of you who need to know).  Anyone who has seen baby pictures of me and of Ethan would know to never question that last part.  Jacob, on the other hand is the frighteningly spitting image of my husband at 7.  Danny (the husband) has told me of passing by the living room and thinking “what is my childhood self doing, sitting on that sofa watching TV” before his brain fully processes that Jacob is in the house.

And now for the thing that makes my life especially juicy and complicated, the kicker that I dropped at the end of my first blog: Jacob is on the Autism Spectrum.  I hate to micro-label, to classify, to reduce him to his DSM IV category, but in the interests of providing a snapshot of him and our life together I will clarify where “on the spectrum” he falls: high functioning PDD-NOS.  When I tell people that, they often ask “Aspergers?”  But, no - he is, in reality, the anti-Aspergers boy. 

His big big big issue is language processing, and he is actually very related, very interested in socializing, talks ALL the time (like his brother Ethan -- we are NOT a quiet family) and would much rather be with people than not.  He just has no clue as to social rules: in the “guess what is normal vs. what is not” competition he would come in dead last.  He has long conversations with the cat and is stumped as to why she won’t answer him, when we do. 

He is also one of the happiest children I know.  Watching the Temple Grandin Movie on HBO tonight brought up so many intense feelings, I’m not ready to write about it yet, still need to process it all, but one thing really struck me: when asked how she was cured, she answered that she was still, and always will be, Autistic.  She had just learned how to get along in the world, and how to use the wonderfully unique aspects of her brain to build a life, a career.  She is who she is; to quote her mother “different, not less.”  

It reminded me of how I answer Ethan when he asks me if I wish that I could change Jacob and make him not Autistc anymore.  I always answer carefully, that I love and value Jacob as he is, and if I could simply make it easier for him to communicate with us and for us to communicate with him, then I would do it in a heartbeat.  But if it meant also substantially changing him, taking away his spark, his magic happiness, the ‘who’ of him, then no, I would not change him for all the world.

There is so much more to say about Jacob, but there is more time for that down the road. Ethan will want his day, and that will be tomorrow.

Family 1967 - My Father with all his kids: Bernice (sister in law), Bruce, me, Lois

Preparing to post, reading over this blog, I realize I need to clarify something, for those confused about my sibling status.  I will refer to myself as an only child, and then I’ll mention my brother or sister, and people will get that “um, did I miss something” look on their faces.  So here it is: 

I am the only child of my parents’ marriage.  My father had had another wife, another life, and two children previously: my (half) brother, Bruce, and my (half) sister, Lois.  By the time I was born, Bruce was 18 and heading off to college, and Lois at 15, living with her mother and stepfather, really had no use for a baby sister. 

So during my childhood, while I technically had half-siblings, I saw them infrequently, once or twice a year, and they functioned more like a young Aunt or Uncle to me than a brother and sister.  We never lived together, and I was raised, for all intents and purposes, an only child.  

Engagement remained sporadic, fading in and out through my (self-finding, family-distancing) 20’s.  Then my 30’s and early 40’s we connected for all the things that gather scattered families: graduations, weddings, births, milestone birthdays, and occasionally just hanging out.

I remember the first time I came to stay with my brother and sister-in-law for a solo visit: I was out with my brother and he introduced me to someone as “my sister, Varda” and I got this strange, quivering feeling inside, because I was so unused to hearing myself called anyone’s sister. I liked it.

And then in the last few years with our father’s failing health and increasing dependence, Bruce and Lois and I have really come together as a team to care for him and my mother.  However, as neither of them live here in New York, and my mother is not their mother, I am out alone on the front line, doing all the physical care, the medical management, the one who gets called next after 911, who heads out at 3 AM to the Mt. Sinai ER and comes home 36 hours later to clingy children.

Bruce lives in a Washington, DC suburb and Lois lives in North Carolina.  When they came up last March for Dad’s 92nd birthday / Mom & Dad’s 50th anniversary celebration, we had a rare late blizzard.  When they came up in mid-December to spend some (possibly last) time with him after his disastrous hospitalization, we had the one big snowstorm of winter.  

My kids are dying to sled, having anticipated 6 inches of snow today and gotten bupkis.  DC is buried under 2 feet plus and North Carolina got a foot last week.  I think I need to make Bruce and Lois come back up North, just so my kids can get a little toboggan time in.

Saturday, February 6, 2010

The Squashed Bologna: a slice of life in the sandwich generation

I know I’m a horrible late-comer to this blogging thing. Like much in my life, I have thought about this for a long time before actually doing it. I’ve been thinking hard since February 2005, the month my very elderly parents moved back to New York from Florida, ostensibly to be nearer to their adorable then 2 year-old twin grandsons. In reality, so I could take care of them, too. 

That was when I realized what it meant to be a part of that often cited “Sandwich Generation” demographic. I am especially so because I am an older parent who is also the daughter of older parents. Common for my generation / locale / socioeconomic milieu. Very uncommon for theirs. Heard often at my suburban elementary school, when my parents came to an event: ”Oh, your grandparents are here.”

I am calling this blog “The Squashed Bologna” because that’s what I started saying, at first laughingly, then later less so, as the responsibilities of intensive elder care bumped up against the all encompassing wonderful maelstrom that is the parenting of young children: “Oh, this is ‘the sandwich generation’, that must be why I feel like the squashed meat in the middle all the time.”

I think what finally pushed me over the brink from thinking to actually writing is the fact that my father is actively, acutely dying right now. It’s a long, slow, painful, process. For us, that is. He’s so out of it, I don’t know quite what it is for him. Very scary I think. He has gone from sleeping all the time (20 hours a day) to being awake and agitated almost all the time.

Even heavily sedated, he will fall asleep, only to bolt awake after less than an hour (and on the bad days, every 5 minutes) sit upright, or even stand up – a feat his doctors claimed impossible for a man at his level of infirmity – and say something like “I have to go, I have to get there!” or “take me, come on let’s go!” Some might say his mind is gone, but I think at a very essential level his inner psyche understands that he is dying, and all the almosts, the might-have-beens, the shoulda-coulda-wouldas of his life are tormenting him. 

He has unfinished business and he knows the clock is about to run out. Hell, at nearly 93 he’s already in double over time. So he is compelled, driven to get going, get moving, get it finished, get it done, even if he can’t for the life of him tell me where he wants to go and what he plans to do when he gets there.

My Mother is, needless to say, having a very hard time. She says, so sadly “That’s not Jim anymore, I don’t have a husband anymore.” And she is right. She has, we have, a giant, angry, needy baby; diapers and all.

I got some good news about my Mom today: her wonderful doctor called with the results of her blood work (I’d taken her to the doctor earlier this week for a much needed check-up) and they were “perfectly normal”. Her cholesterol was 115, and heavy on the good stuff – all the more amazing as her main dietary staples are hot chocolate, blueberry muffins and ice cream.

There is so much more to say here, but it’s a start. Tomorrow (or whenever I can get back to this): more about that other slice of bread – my now seven and a half year old twin boys. And did I mention that one of them is on the Autism Spectrum?