Sadness and Miracles

I am so relieved to be home, but there is no getting back to normal as there is no normal left.

I had been in the hospital for three days while the options for surgery on my gall bladder were batted around.  That third day my surgeon, a local superstar wunderkind, previously all good cheer, came to me with an absolutely stricken look on his face.  An ultrasound, x-ray, MRI and CT scan, all done while testing the gall bladder, were showing a mass on my liver.  It did not look good, he told me.  In fact, it was probably a worst case scenario.  I was pretty stunned, but not as upset as I would have expected.  I didn’t cry or anything, I was just numb.  Fortunately, my friend Christine was with me the first time he broke this news and that made an enormous difference.  Thank goodness I was not alone.  He had already been concerned about doing gall bladder surgery because of my compromised breathing.  Now the surgery I needed for a liver tumor was so complicated and serious, I actually had to be transferred to a different hospital where he worked with another surgeon who specialized in liver surgery.  And there was no question of not doing it.

When I posted this on Facebook, the response was staggering, with comments and encouragement and support from almost one hundred people, some of whom I didn’t even know.  Father David, our wonderful Interim pastor, visited and prayed with me, but to be honest, my own prayers were hollow.  I was dazed.  I sent final messages to my children and funeral plans to my friend Louise, to be given to the kids as needed.

The night they transferred me I had a final CT scan before they organized the surgery.  The next morning the surgeon was in my room again, this time almost speechless.  He felt like an idiot, he said, because the CT scan from the night before showed no tumor on my liver anymore.  There was nothing there.  Nothing.

I did not believe the surgeon was an idiot, although I don’t think that was the most appropriate approach to the news he had.  I also do not believe several doctors could have misread multiple radiology studies.  On the other hand, I had had no expectations of miraculous healing.  I just wanted a peaceful death.  Full of self-loathing, which is cheerfully supported by the people I love most in my life, I never considered myself a miracle candidate.  But it seems that might be exactly what I got.

I have sign hanging on my bedroom wall that says “Count Your Blessings”.  I bought it long ago, before I got sick, when I was leading what I felt was a charmed life.  Four fantastic kids who were wonderful, fun company, a terrific, rewarding career, my little dream cottage, travel, back in school for my Master’s, there were almost too many blessings to count.  Then they started falling like domino’s when I was diagnosed with transverse myelitis and, ultimately, MS.  My family relationships are now in a shambles, with most of them not even speaking to me anymore.  My career is finished and I will lose my cottage anytime now.   Travel?  I cannot even travel to my back garden.  My friend Marc, the Wheelchair Kamikaze, likens a diagnosis of MS to a personal Hiroshima. (Read his moving post here)  It may seem like a histrionic and hyperbolic reference.  But the comparison is apt in that the destruction of your former, healthy life is complete.  Our lives are ultimately shattered as thoroughly as that city was by the atomic bomb. 

Despite what turned out to be incredibly good news about no tumor, it is very, very hard to keep positive.  It is a gorgeous spring day today here at the shore and my family just left for the beach and the Ocean Grove flea market.   In my previous life I would have been there already.   I long to sit in the sun and listen to the ocean, to stroll around the flea market and people watch.  But I can’t get there myself anymore and I wasn’t invited to join them.   I am too much trouble to take along.   The logistics of getting dressed, getting me and my wheelchair into the car and then getting onto the actual sand are overwhelming. 

I am simply so weary of being ill.  Anyone else would have had the simple gall bladder surgery already and would be on the road to recovery.  I sit here, a bundle of complications, with a tube in my abdomen, playing a waiting game until someone is brave enough to take me on.  I have already been told I can expect to wake up from surgery with a tracheotomy and on a vent (a hole in my throat and a machine breathing for me).  They anticipate that I will not be able to breathe on my own as I come out of the anesthesia.  The prospect of living on a ventilator makes me feel physically sick.  Yet I feel tremendous guilt for being so miserable, because I know there are people who are far worse off than I and I am still fortunate in many ways.  I still have many, many friends, each a blessing in themselves.  I suppose my ‘miracle’ is another blessing, put in my path to ponder.   I continue pondering…but mostly I ponder my lost son, how incredibly sad I am and how much I miss my old life.

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To while away the idle hours I have been doing a lot of embroidery and some sewing. Whilst my familiar perches at my head. 

 

I loved these little sailboats from Sew and the City.  I had saved the pattern for my youngest grandson, but I think he has probably out grown them already.  So I stitched them up for the baby of a dear, dear friend who is coming to visit.  I stuffed them lightly, the easier for bitty hands to grip them, and I tied together a few bells and put them inside each.  If the little nipper managed to somehow open the toy, they are too big to choke on in a bunch like that.  My Resident Critic, my daughter, felt they are too girly.  But babies love primary colors, so I stuck with scraps from my Depression-era fabric patterns.  I think they are cute.

The only problem is it made me think of my precious little grandson, who I have only seen twice since he was born eighteen months ago.  I have lost so much, did I have to lose him too?  So I ended up crying the whole time I worked on them.  Tears are supposed to be cathartic.  They are not.  I simply feel worse than ever, bereft and utterly broken by the casual cruelty of this inexplicable estrangement.  

The birds and pansies came from a pattern that I got from an embroidery designer who is based in Cape Town, South Africa.  They were inspired by a Victorian gift book published in 1896.

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Love You Forever

April 17, 1977 was a lovely, warm, early spring day in New York City.  On that day, in St. Vincent’sHospital in Greenwich Village, at the age of 22, I became a mother for the first time.

I had been very excited about having this little person.  It was uncommon in those days to find out the gender ahead of time, so we did not know if we would be welcoming Anna or Ryan.  Even as recently as 1977, in a supposedly modern hospital, we had to jump through hoops for my husband to be with me through labor and in the delivery room.  Not only did we have to attend classes, we had to get special signed permission from our obstetrician.  (I also had to get special dispensation to not have my arms strapped to the side of the delivery table in leather straps, something I was horrified to see on the L & D tour with the Lamaze class).  My doctor’s name was Hardart and he was indeed the son of the Horn and Hardart automat fortune.  A legendary devout Roman Catholic, he was the go-to GYN for nuns.  There were always at least two in the waiting room.  He also refused to dispense birth control.  I took care of that myself, so that was not an issue for me, I went to him because he had a good reputation in our family.

The baby was due April 1 but made no appearance.  The ensuing 17 days were incredibly long.  My grandmother, mother and aunt called me every single day, as if I would not have let them know if I had had the baby.  My aunt, a nurse, worked at St. Vincent’s at the time.  If she did not get me at home, she would call the L & D floor looking for me.  By the time I actually did get there the reaction was “Mrs. Cooper!!  We’ve been waiting for you!”

Ever the obedient pupil, I followed to the letter the instructions to eat lightly as my due date approached, so I would “avoid going into labor with a full stomach.”  It was promised whatever I ate would reappear if I over did it.  So for three weeks I ate nothing but broth, crackers and jello.  By April 16 I looked at Dennis and said “F this, I am starving!!”  We went to our local Italian place where I had ravioli, garlic bread and stuffed clams.  I went into labor at one in the morning.  (And for future reference I noted it all stayed put, thank you very much.)

Giddy with excitement and relief, we raced to the hospital at practically the first contraction.  Way, way too early.  Labor and delivery units operated under strict and Draconian protocols.  Once you got to the hospital, you were confined to bed and not allowed to walk or do anything to keep your labor manageable, except the Lamaze breathing.  Patterned breathing can be effective, but it does have its limits if you have no other tools to use.  We got there around three a.m., having no clue it would be 13 more very long hours of labor.

Around noon I did opt for one shot of Demerol, the only medication I ever took in any of my four labors.  It did nothing but put me to sleep in between contractions.  I would wake up in extraordinary pain and then conk out again.  At one point I gazed over, half asleep, to see Dennis sitting in the bedside chair, engrossed in the Daily News (the Son of Sam killer had struck again during the night). I could have cheerfully choked him at that moment.  It still makes me laugh to vividly remember thinking I would give anything to be sitting in that chair reading the paper.

Once the baby was close to birth, there was a mad flurry of (pointless) activity as I was whisked to the delivery room.  I won’t even comment on the medieval absurdity of this treatment.  But for me, the bottom line at that moment was, I was about to have my baby.

He was actually held up by his feet in the stereotyped way you see in the movies. His little body was sort of flat, all soft angles, and his skin was a translucent pale greenish color.  Then, as I watched, all the angles puffed out and he pinked up from head to toe as he took his first breath and let out a cry.

He was simply lovely.

One of my favorite pictures of us, his first day of kindergarten.

And he stayed lovely.  He rarely cried and had a sweet, solemn demeanor that took in everything.  You could practically see the wheels turning as he observed things.  He had an adorable chuckle when something tickled his fancy.  It was such fun to watch him develop and grow into a little person.

Trust me, he was not perfect.  But he grew into a boy and then a man I was so proud of in so many ways.  We had some very rough times after his dad died.  But as adults, we seemed to have found a common ground.  He was completely independent and self-sufficient, but as I became more financially comfortable, I was thrilled to able to help him a little more.   He traveled a lot and always sent a postcard or brought back a thoughtful token, like wool from New Zealand where he and his wife went on their honeymoon.  And little resin tea bag rest with a kiwi on it.  When I first got sick he said to me that if I got worse, I would never have to worry about where I would live, I would always have a place with him and his wife.

We went to museum exhibitions together and talked about movies and books and politics.  He asked me to hold the Bible for him as he was sworn in as an attorney.  He and his wife, who I love dearly, bought a charming home and we had a fun family Easter brunch there the first year they were in the house.  They welcomed me to their lake house, where her family has vacationed for a century.  I was thrilled for them as they began their life together.

In May of 2010 he had some time off for the first time in probably a decade.  He had worked his way through college and law school and then went straight to work, with no break.  He invited me up to the house to have lunch with him.  He made a fantastic salad.  I gave him his birthday presents and belated wedding presents, two little oil paintings that reminded me of their place in the Adirondacks.  We had such a nice afternoon.

He has never voluntarily spoken to me since that day.

I do not know what happened.  I do not know what I did to upset him or hurt him.  I have agonized over that day, and others, trying to remember what we talked about, what I might have done, but I cannot think of anything.  I have teased him, tried to cajole him, and finally wept and begged him to tell me what I had done and how could I fix it.  But he has only said it is about him and this is something he needed to do.

I have cried more, prayed more, tortured myself more over this than any bad thing that has happened to me in my entire life.  When he had his own little boy last year I thought, now he will know, now he will understand, and he will come back.  But he didn’t.

When he was born, my family descended on St. Vincent’s like a joyful cloud.  My grandparents, my parents, my aunts.  Time has taken a painful toll.  My beloved grandparents are gone now, as are Dennis and my mother.  Even the hospital doesn’t exist anymore, it went bankrupt and closed in 2010 after serving New York City  for 161 years.  The aunt I was so close to, my mother’s youngest sister, the one who called me every day those last three weeks, no longer speaks to me, as we vehemently disagreed over the care my mother received in her last months.  My own nuclear family is fractured by sadness and reproach.  And I don’t even know how it happened. 

Another of my mother’s sisters used to send my grandmother flowers on her own birthday, to say thank you for having given birth to her.  I want to send Ryan virtual flowers, a virtual botanic garden, to thank him for making me a mother.  Despite everything, being a mother is the best thing I have ever been, it is the job I have been happiest at, ever. 

As multiple sclerosis progresses, I recognize how numbered my days are.  I do not have decades left.  I will hope against hope that whatever occurred that caused him such distress can be reconciled  and resolved.  We are missing so much.  As hard as it is for me, it is equally hard to think of him suffering.  He will always be my precious boy, no matter what.





In My Life, the song he picked for us to dance to at his wedding.

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My Personal Mother's Day

Today, Sunday, April 17, 2011, is the thirty fourth anniversary of my becoming a mother. It is the thirty fourth birthday of my first born.

He was due April 1, so he was maddeningly late. Those last two weeks my mother, grandmother and aunt called me every day to see if there was any news. My aunt worked at the hospital where I was going to have the baby. If she called and I wasn’t home, she would call the Labor and Delivery floor to see if I was there. When I did finally arrive, the nurses all exclaimed, “Mrs. Cooper! We’ve been waiting for you!”

To say I was thrilled with my little boy does not even begin to cover it. He was a beautiful baby, pink and round. And so good! He rarely cried, slept like a log and solemnly took in the world with his big blue eyes.

He was a friendly, engaging toddler, interested in everything, talking non-stop, and always, always wanting to learn. When he was three he had me copy out the alphabet for him and show him the letters for his name so he could learn to write it. On his own he did this. Although the very first thing he wrote were the words “fire truck”, as that was his current obsession.

He was always mature for his years and a hard worker. When he was 13, again all on his own, he went to the local pizza shop and asked for a job. They gave him a broom and he has been working at some job or another ever since.

When he was twenty, he explored the country, working his way across the United States, from Maine, down the east coast to the South and across the South to California. It took him more than a year. I was worried sick the whole time he was gone, but I was so proud of him. Most people only dream of such an adventure, he actually did it.

He worked his way through college and law school, graduating with honors, and now is a respected attorney with a prestigious firm. He chose a lovely woman as his wife.

My sweet and funny little boy has brought me more joy than he will ever know. Nothing will ever change that.

As Robert Munsch wrote in Love You Forever…

“I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.”

Happy birthday. Thank you for making me a mother.



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A Long Time...But Went So Fast

Thirty two years ago today, I became a mother. I have to say, it was the happiest day of my life.

My sweet baby boy is a grown man now. Married. A lawyer even. (You know I had to squeeze that in, what kind of mother would I be other wise?!?!)

Along with my other children, he has given me the most precious, golden seconds, minutes, hours of pure joy. Watching him grow, watching his personality develop has been a gift from God. He was always a little serious, but can be incredibly funny. His smile, his laugh still lifts my heart. Will always do so.

Thank you, Ryan, for being my son. I love you.