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A Heart Made of Glass

Four year old Alex is the seventh of our adopted children.  He came to us after spending the first six months of his little life in Children’s Hospital of Philadelphia. Alex was born with a critical cardiac condition , hypoplastic left heart syndrome.  The treatment for HLHS is a series of surgeries  to gradually reroute blood as it flows through the heart to the rest of the body.  Stents and other pieces of hardware become a permanent part of a repaired hypoplastic left heart. Basically, Alex was born with a broken heart.  In some ways, he was one step ahead. He didn’t need to wait for some pretty little thing to break it for him.

Twenty year old Sonty is the second of our adopted children, a happy, loving intelligent boy, with a fully functioning heart. However, Sonty seems to lack a bit in common sense.  Or maybe he just blurts out the first thing that comes into his brain.  This condition is often known as FIM or “foot in mouth” syndrome.  A few examples…two weeks after a visiting cousin,  Michael, had returned home to Maryland, Sonty asked if Michael was sightseeing in the city. Then there’s the incident where I texted him to ask if he’d be home for dinner and he texted back, “yes no”.  Or the time Sonty’s brother, Kevin, moved back from Florida and a month later Sonty said, “Hey, Kev, when did you get back?”  Keep in mind,  Kevin and Sonty live in the same house and sleep on the same floor.  “Earth to Sonty!

It was a warm April day as Alex and Rosey along with their nephew, Lucas and their niece, Evelyn played in the long hallway that is the entrance to our home. Sonty and his friend sat on the steps enjoyably watching the little ones. As Alex pushed his toy cars across the floor, I noticed that he had something in his mouth.  Alex is notorious for taste testing anything smaller than his head, whether edible or non-edible.  He has snacked on pennies, dog food, little wheels off of Matchbox cars, cat food, paper, crayons and baby wipes.   As I bent down to inspect what he was chewing on, he spit  a piece of glass into my hand.  I thought for a second (the usual length of most of my thoughts) and remembered that a few days earlier I had dropped and broken a wine glass in the hallway. I thought I had swept up all of the broken bits of glass , but apparently I had missed one.  Sonty stood up to inspect the glass and then very seriously commented, “Oh, that must be a piece of Alex’s heart.”  I looked at Sonty in disbelief.  He then added, “What?  Didn’t the doctors replace some parts of Alex’s heart with glass parts?”   I  said, “That’s right, Sonty. And every so often a piece of glass breaks off of Alex’s heart and he coughs it up and spits it out.  Eventually , Alex will cough up his entire heart and he will then be heartless!”   Needless to say, Sonty’s take on Alex’s heart became the subject of much comic exchange among his older brothers. However, while  Sonty may be known, in our family, as a bit of an airhead, we all know, without question, his heart is made of the right stuff.




Notre Rose Céleste (Second in a series)

It was a very rainy evening when we made the trip to the adoption agency in Allentown where Rosey’s birth mom would present her beautiful infant to us.  Rosalina, Rosey’s mom , was a courageous and selfless sixteen year old who knew how difficult it would be to care for her newborn daughter in light of all the medical  issues the baby was facing.  Rosalina was alone , and as she introduced us to Rosey, I sensed in her a profound sadness, a grief for the loss of a child she had helped to create, grief that most likely  would find an eternal place in the heart of this young mother. (When we arrived home and changed Rosey’s diaper for the first time, we discovered a note in her sleeper.  The note, written by Rosalina, said,”I love you. Mommy.”) We could not have our joy without her sorrow. This is this because that is that. It is with deep humility and gratitude that we received Rosey into our family.

Rosey was off to a fast start; In her first week with us, Rose took a trip to the Philadelphia Zoo, went shopping at the Springfield Mall, and then met and was held by the Phillie Phanatic at a “fun day'” at  Fair Acres nursing facility in Delaware County. It was life in the fast lane and she didn’t even have a driver’s license. It was “baby’s day out” everyday.

We would soon discover that our sweet little rose from heaven was not without a few thorns. That first week, after her whirlwind days, she slept like a baby each night. Then the party was over.  During the nights that followed, Rosey cried like a baby, drank like a very thirsty baby, and was awake all night, just like a newborn baby.   Dexter and I were sleep-deprived . We took turns tending to Rosey in the night.   At times, she was inconsolable. We took her for long  midnight drives or literally walked the dark streets with her. What we thought was an insatiable appetite was actually an insatiable thirst.  It would take until July 25th to ascertain that something  was awry with the little rose.  Blood tests revealed  high sodium levels caused by a medical condition called diabetes insipidus. This was just one effect of many related to her underlying condition, Septo Optic Dysplasia. The diabetes insipidus was also the cause of the unquenchable thirst. The pediatrician called and strongly urged us to get Rosey to the emergency room as soon as possible.  We took her to The Children’s Hospital of Philadelphia and so began a two week hospitalization.  She was poked and prodded, scanned inside and out, right side up and upside down. She was stuck for blood draws every fifteen minutes.  After all that, we learned that our little Rose would most likely never see, never walk, suffer seizures, and basically be a hot little mess, a little baby “freak” who would fit right in at “Freak Haven”.  There’s no contracts with God. We were given the blessing of this heavenly flower. She was a miracle to us, but one whose prognosis was becoming more grim as the days went by.

From day one, we believed Rosey came to us by way of the intercession of Saint Therese of Lisieux aka “The Little Flower”.  So, we placed an image of Therese in Rosey’s hospital bed and commended her to the saint’s  guardianship. In time we learned something that was indiscernable to all the medical scans and testings. Rosey turned out to have angel wings. She continually reminds us that “all the way to heaven is heaven”.

Notre Rose Céleste (First in a series)

Adoption policies have standard criteria regarding the age of parents who wish to adopt infants. For someone who is over the age of forty-five, it is almost impossible to adopt a baby . At age sixty, you’d have a better chance of winning the power ball and being struck by lightening twice. Unless, of course, it is a one-legged baby with half a brain. Then a parent of any age can buy one get one free. The adoptive parent themselves don’t even have to have legs or brains. Why wouldn’t the most challenging children be offered to the elderly?  Fortunately, this policy worked in our favor when we sought to adopt an infant in our golden years. Each of us even had a full set of legs and at least a brain between the two of us.

It was Thursday, May 21 2009.  We received the call about a baby girl not yet born. The tests in utero showed that she lacked a corpus callosum and most likely had a club foot. Club foot we understood but corpus callosum? It sounds like a botanical name for a Gerbera Daisy. What we googled wasn’t very pretty and the kids that lacked corpus callosums were funny-looking little things. We really didn’t care.  We knew love would conquer all and this little baby to be would be the cutest ever!!  I am pretty sure a mother hippopotamus has the same thought as she waits for her baby hippopotamus to be born. And so we agreed to take the baby, missing parts and all.  We were excited and spent the next few days eagerly awaiting the call that the little one had been born.  Her name would be Therese in honor of St. Therese of Lisieux aka The Little Flower, to whom we are fondly devoted.

It was Sunday night, May 24th.  Dexter browsed emails while I cooked dinner. One of the emails, a forward from our daughter, Suky, displayed a shower of roses and an inspirational text. It had been sent a few days  before but Dexter only now had the occasion to read it. At that very moment, the call came.  She had just been born.  Were the roses in the email a sign from Therese?  Traditionally, roses are associated with favors granted through the intercession of Therese.  We needed no convincing. This was notre rose celeste (our rose from heaven). Soon we learned that her birth mother’s name was Rosalina. And so the baby would be called Rosalina Therese, our little Rosey.

As it turned out, Rosey did not have a club foot.  She did have a corpus callosum, a thin one, but alas, no septum pellucidum. When its all put together, a corpus callosum (CC) minus a club foot(-CF) minus a septum pellucidum(-SP) plus one half a pituitary(+.5 P) equals Septo Optic Dysplasia(=SOD). To us, it sounded like Rosey should be a veritable Baby Einstein. According to the docs, it was more like she would be a another Helen Keller. Either way, no matter how you figure it, it’s all relative anyway, Rosey is our little miracle.

Eye Candy

Each afternoon, at 3PM, the little yellow school bus squealed to a halt in front of our house in Havertown. The door opened and a smiling little 4 year old, Lucy, tentatively made her way down and exited the bus. After a wave goodbye to Naomi, the driver, and holding tightly to my hand, Lucy negotiated the long flight of steps to the front door. As she maneuvered each step , she repeated, like a mantra, and in a sing-songy voice, “Want to listen to Dar Williams!” Dar Williams, singer songwriter, just happened to be a favorite in our home at that time (Apparently, so was Brittany Spears, because the parakeet repeated the name Brittany Spears as frequently as Lucy voiced her musical preference for Dar Williams.)

We entered the house where we were greeted with great excitement by our own kids and the kids who spent the day with us as part of the home day care that Dexter and I had founded. Lucy was one of our first clients along with her baby brother, Jimmy. Lucy determinedly made her way past the others and headed straight for the den at the back of the house. There she would take her place on the long church bench, all the while still requesting to listen to the music of her friend, Dar. As I hurriedly placed the CD in the player, I listened for the familiar daily sound that was signature Lucy. It was a sound very much like that of a cork being released from a champagne bottle, a daily “New Year”celebration. In our case, it was more like Groundhog Day. It was the sound of Lucy popping out her eyes, beautiful perfect eyes. But Lucy’s eyes weren’t real. These prosthesis were made of glass, for ‘looks”only. Lucy was born without eyes, her pretty little face fashioned with small sunken indentations where her eyes should have been. She was blind. Each day, before she began to listen to her favorite music, Lucy popped her eyes out in an attempt to be more comfortable, like taking one’s shoes off at the end of a hard day at work. The eyes would launch across the room, landing in a potted plant or on a windowsill. I would then scoop them up and put them aside to give to Lucy’s mom when she arrived to take the little girl home.

On this particular day, chaos abounded in our busy little house. Kevin’s teacher was calling to say that Kevin was serving detention after school because he laughed at the kid making fart noises in class. Suky insisted on brushing her doll’s hair with the toilet brush. Dennis T, our “special” friend, called to say that he was making a promise from his bottom heart. How many hearts does he have ,for God’s sake!  Dano bit Suky and Matthew cried when Dano was corrected. The dogs barked and the kids screamed. I didn’t scoop up the pretty little eyes fast enough. When I went back into the den to find them, only one eye was there. I searched high and low, under and over, up and down, but there was still only one eye. What would I tell Lucy’s parents?  And so Lucy went home with only one eye and my promise to continue the search for the lost one.

The following day, the Lucy routine repeated itself. The yellow school bus arrived, Lucy made her way to her beloved bench, popped out her eye and requested Dar. This time, however, I immediately retrieved the one remaining eye and set it aside. God forbid that both eyes were lost!  Lucy wouldn’t be able to see!.

There is a happy “ending” to this story. At changing time, as I removed Lucy’s diaper, there it was, the lost eye, staring straight up at me!  Lucy had swallowed her eye and it had’ seen” its way to the other end. Beauty is said to be in the eyes of the beholder; this was not a pretty sight. It was consistent, though, in a house where so very often, we don’t know if we are coming or going or which “end ” is up. No “buts” about it, we surely are a freak haven, where all are seen through the eyes of love.

Doug Unplugged

It was September 3, 1997, the first day of school.  I arose at daybreak, wanting to be sure to have sufficient time to make special lunches, tailored to the likes of each child, lunches packed with the care and love only a mother could provide.  I would miss the kids for a second or two as they headed off to begin a new year in school.  As I labeled each bag and lined them up along the kitchen counter, I heard the back door open.  What to my wondering eyes should appear but a man, a naked man, carrying only a towel, a small towel, but one large enough to quickly cover things that were not meant for my innocent eyes.  Doug, our tree house dweller, apparently had made his way across the backyard, in his birthday suit. Why would it matter that it was his un-birthday?  He was headed upstairs for his morning shower. I am guessing he didn’t think anyone else in the house would be up that early.  Or, knowing Doug, it didn’t really matter to him if anyone else was up.  You see, Doug was sort of a naturalist, a tree hugger who snacked on seaweed , drove a Subaru Justy filled with rotting fruit, and had a special fondness for the moistness of the morning dew.

Doug entered our life through a “Wrinkle in House Church”. House Church was a fifth dimension of people  who gathered weekly in one another’s homes for prayer and scripture reflection.  Their thoughts could have been the substance for SNL’s Jack Handy. They took scripture reflections to new depths.  All I could think about during these times was “Jesus loves me this I know because the Bible tells me so”. Our Havertown neighbors surmised we’d become entangled with a cult. In retrospect, who could blame them?  House Church in Havertown is comparable to Modern Family meets the Cleavers.

One warm summer evening, as House Church gathered on our deck, Doug  expressed his desire for a back-to-nature lifestyle. My husband kiddingly offered our tree house to Doug. The rest was history. Unbeknownst to us, within days, he took up residence there. When you are getting six kids ready for school, who has time to notice who is living with the squirrels in your backyard? Little did I know, the naked guy slipping through our kitchen that September morning would be living with us for the next two years.