Happy Birthday, Miracle Baby

I’m sending birthday wishes to my older daughter, who celebrates her birthday today.   There’s a reason I call her a “miracle baby.”  I’ve written that my first husband, Rich, suffered heart failure when he was just 27.  He was sent to Johns Hopkins Hospital in Baltimore to find out why such a young, otherwise healthy, man would have CHF.  We learned from his echocardiogram that his heart failure was brought on by a malfunctioning aortic valve.  He also had cardiomyopathy, an enlarged heart.

While we were there, a genetics specialist came up to examine Rich.  We were very surprised but cooperated.  Rich answered questions about his health and allowed his limbs to be measured.  We were puzzled when Rich was asked: do you have stretch marks in unusual places?  He did—all over his shoulders and upper arms.  Are you double-jointed?  Rich demonstrated he was.  Have you always been *that* near-sighted?  Yes, since childhood.  We were mystified.

The doctor had another surprise for us: he told us he believed Rich had Marfan Syndrome, which was a disorder of the connective tissue.  It could affect the eyes, lungs, heart, and skin.  People with Marfan were generally exceptionally tall (Rich was 6’6”), double-jointed, and had stretch marks in unusual places on their bodies.  We sat there with our jaws dropped open.  It turned out that Hopkins had a clinic for Marfan patient, seeing people from around the world.

Before doing anything about that, however, Rich’s malfunctioning aortic valve had to be addressed.  The surgeon felt that, because of Marfan, Rich should have it replaced with a mechanical valve.  A mechanical valve would stretch out the way a pig valve would.  The surgery was still in its beginning stages, just past the point of being “experimental.”  The surgeon warned it could be 50-50 either way.  If he didn’t have the surgery, Rich knew he would weaken and die.

The night before the surgery, we comforted each other the best way we knew how.

My parents, still active over-drinkers, grudgingly agreed to come and watch our sixth month old baby son.  My father actually asked me why I needed to be there for the surgery when Rich would be knocked out; besides, the nurses would be there to take care of him when he awakened.  I was already stressed and my mind was blown.  I reminded him how we all sat in the waiting room for hours during my mom’s hysterectomy because we were so worried about her.  What if she’d died?  I guess my father “got it”.  I don’t know: I walked out and drove Rich to the hospital.

Rich’s father and step-mother drove down from New York, arriving just after Rich was transferred from Recovery to the ICU.  I was only able to see him for the seconds it took for the orderlies to hurry his stretcher down the hall.  He looked scary but he was breathing.  He was on a ventilator and his wrists were tied to the stretcher railings.  Rich’s dad and stepmom arrived just a few minutes after I left the hospital.

Rich was in the ICU for a week.  From the moment he woke up, he fought the ventilator.  He tried fingerspelling (he learned signs to communicate with my parents) to the nurses but they were clueless.  One of them called me because he’d begun rocking and rolling and wouldn’t lie still.  The nurse wanted me to tell him to relax.  I tried but I just heard him trying to speak, a bark-like noise.  I figured out he was saying, “Off, off!” and told the nurse he wanted the ventilator removed.  They did and he calmed down.

Still, he became depressed over the next day or two.  I used the TTY to ask my parents to come back over so I could go and visit him; cheer him up.  Grudgingly, my dad dropped Mom off to stay overnight and I went to see Rich.  He perked up immensely when I arrived, so I spent several hours with him.  When I got home, Mom accused me of taking advantage of her by staying away so long.

I suggested we have my dad come NOW and get her; I would take the baby with me to the hospital the following day and ask for help.  I wasn’t going to abandon my husband just because my parents felt inconvenienced.  Mom saw how upset I was and backed down.  She agreed to stay one more day.  That, at least, gave me time to make other arrangements.

When Rich was released from the hospital, he was very weak.  The only steady income we’d have over the next 2 months would be from my part time market research job and any interpreting I could pick up.  I knew I couldn’t ask my parents for help so I reached out to Rich’s sister and his stepmother.  Each drove from Long Island to Maryland to care for our son and Rich so that I could continue to work.

It was exhausting and we were struggling financially, but Rich was alive and recovering.  His mood was still low, though, because of our financial situation.  It didn’t help when we went to see the cardiac surgeon and learned that his heart was still very enlarged.  I got the doctor aside and asked what were Rich’s chances.  The surgeon asked, “Are you sure you want to know?”  I did.  No more than five years, he said.

It was a shock.  

I missed my period.  Was it stress?  Even in stressful days, I was regular to the day.  I was a week late and made an appointment with our doctor.  I went by myself, leaving my mother-in-law to care for Rich and Billy.  I told the doctor I needed a blood test; I was pregnant.  No, no, he said.  You are just stressed.  So much has been happening.

I insisted I was pregnant.  I was NEVER late.  Sighing, he drew my blood.  Days later, he called and sounded stunned.  “Yes, you are pregnant.”  Then he advised me not to tell Rich, who might find the news devastating and depress him further.

Great.  I’m not supposed to confide in my husband and best friend, left alone to worry about how we were going to survive all this.  And Rich wasn’t even supposed to live more than five years!  I didn’t want to tell my in-laws yet, either, and have them accidentally spill the news to Rich.

It ended up being me who spilled it.  One day I was in the dining room and, while Rich napped, I began wondering what would happen to us without Rich.  I began to cry.  And then Rich was there, wanting to know what was wrong.  I tried not to tell him the truth but gave up when he kept asking.  Maybe I’d end up killing him off sooner but I couldn’t help it.

To my complete surprise, he broke out in a big grin.  He was absolutely delighted.  The news pulled him right out of the dumps.  When I saw how happy he was, I was thrilled too.

Rich was scheduled to have another echocardiogram about 8 months after his surgery and I was definitely ready to have our baby, top heavy and waddling about.  When the surgeon came in after the test, he had an amazed look on his face.  “This is like a miracle,” he told us.  “The size of the heart has gone down in size by almost half.”  He looked at Rich and asked, “What have you been doing?”

Rich answered straight faced: “Making a miracle baby.”  He swore that he regained all his hope when he learned we were to have another child.

So, happy birthday, Miracle Baby.

Rich began to have atrial fibrillation in March of 2001, a good 13 years after his surgery.  The night before his appointment to see an electro-cardiologist, he passed away in the night.

 

Another Eye Blink

Fifty years ago today, I was about to begin my senior year of high school.  I was looking forward to it.  I was now entitled to special privileges as an incoming senior: taking classes I wanted instead of those required; the ability to wear a tee shirt and jeans to school instead of pant suits; and the right to sit at the back of the bus and sing out:

“We are the seniors, the mighty, mighty seniors!

Everywhere we go, people ought to know

Who we are, so we tell them

We are the seniors, the mighty mighty seniors…” and the song would go round and round as long as we pleased.

September 4, 1972 was Labor Day.  My tradition was to spend it watching the Muscular Dystrophy Telethon with Jerry Lewis.  I’d begun watching it a couple of years back, and I always was moved by the stories by MDA sufferers and by any progress made in the medical field.  I donated what I could afford.  Each year, when Jerry Lewis sang “You’ll Never Walk Alone” at the conclusion of the telethon, I would cry too.

I’d been enjoying the Summer Olympics up until the next day, September 5th.  Terrorists belonging to a group called Black September invaded the apartments of the Israeli wrestling team.  Two Israelis were killed outright, others escaped, and nine were taken hostage.  It was horrifying not only because an act of terrorism had struck the Olympics but because they were in Munich, Germany.  Germany had been trying very hard to discard the Nazi stigmatism and to make amends.

As soon as Jim McKay, then the journalistic face of the Olympics, announced what had happened, I was glued to the TV set.  It was such a shock for such an awful thing to happen at the Olympics, an occasion when political differences were set aside for athletes from around the world to peacefully compete in sports.  I’m sure this was an instance where “the whole world is watching” but I only had eyes and ears for Jim McKay.  In between his reports, the games went on.  It was sort of surreal, continuing the competitions when there was so much danger right there.

The crisis went on into this day, 1972.  I don’t remember the time of day or night, but I was watching when Jim McKay came on the air, his face pale with shock.  In a stunned voice, he announced that the fleeing terrorists, with their 9 hostages, had been confronted at the airport by police.  All the Israeli athletes were killed in the firefight and so were all the terrorists.  It was absolutely horrifying.  I felt sick to my stomach and turned the TV off.

My senior year began on a melancholy, grieving start.  As is true with youth, though,  I was 17, and by the end of the week, I was having fun having lunch in the senior lounge with my best friends.  Most of the year was pretty awesome.  My teachers, all but a couple, were totally amazing.  The two exceptions were the teachers for U.S. History and English.  The English teacher was originally a kindergarten teacher and from that position, suddenly found herself at the high school level.  She treated us (I felt) like the kindergarteners she’d taught.  I acted out in her class, arguing with her over every little thing.

She sent me to the principal’s office.  Everyone loved Mr. Fortunato.  There wasn’t a mean bone in his body, and he was as rumpled and cuddly looking as Pooh Bear.  We’d talk; he’d send me back to class.  After the third time, we explored why I couldn’t behave in Mrs. Burke's class.  I told him I felt my intelligence was being diminished; I was bored and tired of being treated like a dumb little kid.  He then saved the rest of the year by moving me to a class taught by my 11^th grade teacher, Ms. McManus.  I’d loved my junior year with her, learning all I could from lessons on transcendentalism and other interesting topics related to English.  I was never bored.  Being in her class again was so refreshing.

The history teacher was just a loss.  I think she was burned out and had no real interest in teaching.  I was totally bored out of my mind; all we did was read a dry textbook.  I’d been learning the SOSDD for the last few years.  Did history never progress beyond the Revolution?  I began skipping her class to either take the bus downtown to the library or to visit my Drama teacher, Mrs. Cooper.  Mrs. Cooper was supportive and encouraging of my abilities and I developed a lot of self-confidence working with her.

One day I happened to look into the hallway as I sat in Mrs. Cooper's class.  The history teacher passed by and our eyes locked.  Oh no, caught!  Sure enough, the teacher turned me in and I was back with Mr. Fortunato.  I readily admitted cutting her class to go visit Drama a second time during the school day.  He asked me not to do it again and I said I wouldn’t but … well, little did I know until a little later in the year that he and Mrs. Cooper had a thing going.  One time he came into her classroom for a chit-chat while I was there, cutting history again.  He acted like he didn’t see me.  I was always grateful for that.

In December, one of our maintenance crew apparently lost his mind.  I heard he was frequently the target of student bullies.  I’m not sure why they made fun of him.  Anyway, they were at it again, tormenting him in the cafeteria just before the first period bell was going to ring.  He drew out a machete and chased his tormenters out the door and onto the outside quadrangle.  I guess he panicked and then ran from the cafeteria and up the stairs.  There he confronted a security guard and stabbed her with his knife.  He ran from there, down the hall toward his office.  On the way, he grabbed a hostage, a sophomore.

His office was right around the corner from my psychology classroom.  His back wall backed up to ours.  He and his hostage were screaming.  There was pandemonium.  I’ve written about this before and am sure I will write about it again this December because it’s become so imprinted on my brain.  I’ll just say this for now:  it didn’t end well for the maintenance man.  I’m not sure what traumatic memories the sophomore was left with.  She’d be 65 this year.

After December, the rest of the school year went very well.  It’s fortunate I was in Psychology when “the incident” happened.  Years before non-war related PTSD was ever considered, our teacher understood what trauma could do to a kid.  She kept us calm throughout the incident.  When we came back to school the following Monday, she had us write down everything we could remember from that Friday the 13^th.  She advised us to write it out as often as we needed and to talk about it and not keep it like a secret.  That ended up being the best advice, one repeated to me by therapists I've seen over the years.

The rest of the year was pretty awesome.  I was still making pretty good money as a babysitter for several families, buying my own albums and books to read.  My favorite artist continued to be Neil Diamond but I was also rocking to Elton John, Dr. Hook, Three Dog Night, The Moody Blues, Chicago, The Temptations, the Carpenters, Gladys Knight & the Pips, Stevie Wonder, Jim Croce, Diana Ross, Helen Reddy, Paul Simon, The Edgar Winter Group (Frankenstein), Roberta Flack, and Aretha Franklin.  I realize Paul McCartney, the Stones, Jackson 5, Osmonds, David Cassidy and others aren’t on the list.  I liked them but not as favorites.  I had too many favorites to begin with anyway.  My bedroom walls were completely covered with posters from teen magazines.

As seniors, the school year ended two weeks ahead of our younger classmates’.  As a junior, I remembered the celebration of departing seniors from the school parking lot.  Now it was my turn, except I was riding a bus instead of driving a car.  It was such a feeling of freedom although I was sad about leaving my favorite teachers. 

Graduation was very special.  I had gone to an all-girls high school and we had such a big class, we graduated from Baltimore’s Civic Center.  We all wore white formals instead of graduation gowns and, to be honest, that just felt ever so much more special.

I went to the school’s one-year reunion and met up with my best friends and Mr. Fortunato.  We gathered together at the student union of Johns Hopkins University.  Our school’s 1924 class were gathering in another banquet room, and I remember being awed.  Fifty years!  Imagine that!  How incredibly old these graduates were, and how amazing it was for them to celebrate together after all those years.

Well.  I’m expecting to hear from the person in charge of our 50^th Anniversary celebration.  That’s next year.  Fifty years.  Wow!

Different Drummer

I am by nature an introvert.  I tend to be an observer and can relate to the feeling of being on the periphery of a group of friends or family.   Before I started school, I was surrounded by loving family and believed that all mommies and daddies were deaf inside the house and hearing outside.  The reason for that is sign language was still stigmatized when I was a child in the ‘50s-60s-70s.  My parents didn’t sign in public, only using their voices with my brother, family members and me.

When I was in first grade, we moved to a neighborhood about 10 miles from most other family members.  Our neighbors on either side had children and I wanted to be friends with them.  One morning, I woke to chanting out my bedroom window.  I went outside to see what was going on and found these “friends” dancing atop a mound of peat moss my parents had delivered to our back yard.  They were chanting, “Cassie’s mother is deaf and dumb.”  I wasn’t sure why they were calling my mom dumb because she wasn’t.  I was hurt and angry, charging up the mound to push them all off.

I ran inside and found Mom in the kitchen.  I mouthed and acted out what happened, and her eyes began flashing with anger.  I wanted to know what “deaf and dumb” was.  Mom said it was an insult because she couldn’t hear.  That was news to me.  For the first time, it crossed my mind that she couldn’t hear me speak.

“Can you hear me?” I asked, loudly, and she shook her head no.  Now I was really upset.  I shouted, “Can’t you hear me NOW?” She shook her head no over and over.  I was thunderstruck.  My parents weren’t like the neighbor kids’ parents at all.  Just as suddenly, I realized we were different.

I did eventually make friends with other kids in the neighborhood but I was more reserved than I ever had been.  I’d been burned and never played with those first friends again.  Sometimes the newer friends would invite me to their houses to play; I was reluctant to ask them to come to mine.  I didn’t want a repeat of those first new “friends”.

At 10, we moved to Baltimore.  People thought I was shy because I was very quiet.  My brother and I did play with kids in the neighborhood but we were always on tenterhooks because we were different.  Sometimes those kids would taunt us and say our parents were foreign spies because they “talked funny.”  It was a lonely feeling, not being a part of the group.

It wasn’t just my parents’ deafness that made me feel different.  It was as if being far from family removed my parents’ inhibitions.  They discovered a social club for the Deaf and that became their center.  The drinking and domestic violence began.  My brother and I didn’t want to have friends over.  I didn’t want anyone to learn the truth about what was happening in my family.  I already had co-dependent characteristics and they were aggravated and increased by the drinking and fighting.

As I maneuvered my way through school, I had a handful of friends.  We socialized by phone only after school.  I never fit in with a clique.  Fortunately, after a disastrous year in junior high, I managed to move up from the bullied loser caste level to a level where the mean kids just tolerated and left me alone.  I was just so relieved to be away from the cliques. 

I preferred to hang out in my bedroom with the door closed, reading or writing, and listening to Neil Diamond.  I enjoyed my privacy and definitely enjoyed being away from my battling parents.

As I got older, I learned about transcendentalism and was introduced, by a favorite English teacher, to writers like Emerson and Thoreau.  I found a quote that hit me where I lived and it became “mine”:

If a man does not
keep pace with
his companions,
perhaps it is
because he hears a
different drummer.
Let him step to
the music which
he hears, however
measured or
far away.  –Henry David Thoreau

This is me, I thought.  It was an early act of self-care that I took this quote and decided to wear it proudly as a shield against hurtful words and being left out. 

It wasn’t always easy to wear that shield, especially when it came to dealing with my parents and their issues.  All of my own were triggered often as I tried to be a “good girl” to control their drinking and stop them hitting each other.  Stress brought on panic attacks/depression and I would lose that shield I was wearing.  Sometimes I couldn’t find it again for long periods of time.  I told my parents I needed to see a psychiatrist, and they were horrified.  How embarrassing.

I got help once I got a full-time job with benefits.  Therapy was a little helpful in that I got medication to reduced my panic attacks and depression. It was 1974 and there wasn’t a lot of information about children growing up in dysfunctional homes.   It was in the early 1990s before I learned about 12 step meetings specifically about my experiences.  Later on, in the ‘90s, I found a therapist who had alcoholic parents.  I learned so much about why and how I felt such intense anger and anxiety.  Understanding why I felt as I did help me learn how to reshape my own responses to difficult situations.  It’s taken years but now I’m in a very comfortable place.

I know how to act like an extrovert and I can take that role if it’s necessary.  Most of the time, though, I am who I am and don’t feel a need to explain myself or feel left out of things or hurt.  I have a few good friends, my books, my music, my writing.  Most of all, I have a supportive and loving husband, and an awesome blended family, 3 of my own adult children, 2 of his, 8 grandchildren and 2 great grandchildren.  Life is good.  I am grateful.

I still march to that different beat.  I always will.