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No Ifs Ands or Butts

According to our daughter, Ebony, I have a flat butt. She asked me if this was because I sat on it too much.  Seriously, Ebony?  This butt hasn’t met up with a couch since Washington crossed the Delaware. That is an exaggeration, but sometimes it seems like that long ago, back when there were no children, no pets, and no home for which to care. It is almost impossible to imagine such a time, and frankly it must have been quite boring.

In reality, days in this house begin at 5AM and end around midnight give or take an hour. By 8 AM, we’ve already put in a full day. Four kids have been sent off to school. And these aren’t “normal” kids. There is Salinna with her cerebral palsy, a total care child in a wheelchair. Salinna is sixteen now and she is a typical teenager.  She hates to get up in the morning and she won’t do a thing for herself!  We ask her if she stayed up late talking with her friends on fb. (This is a joke.  Salinna doesn’t walk or talk, but if she did…!)  And then there’s dear Alex who wakes up asking for donuts or cupcakes. We think donuts and cupcakes are a perfectly fine choice for breakfast, but , of course, meds must be taken first.  “No like medicine!” “None of us like medicine, Alex, but if you want to stay on this side of the grass for awhile, you have to take your medicine. No medicine, no cupcake.” Finally after this back and forth a few times he takes his medicine and states “I don’t wanna play outside”. Whatever. Then it’s time to feed the cats, walk the dogs, toss in a load of wash from the bed wetters’ club, followed by a regular load of wash and then feed and water Hazel, the horse and clean her corral. And if it is not every other day, there is no shower.  Mothers and fathers do not need daily showers.  They just need to wash the body parts that show.  And that  does not include a flat butt.  Next, it is time for little Rosey to be on her way.  Rosey likes the whole family to see her off to school, so whoever is available is beckoned to watch for bus #46  no matter how long the wait . Just after this, it is time to wake up Ebony who frequently can be heard running on her treadmill or practicing her vocals at 4AM. And so it usually takes a stick of dynamite to get her out of bed and sometimes that isn’t even enough.  The bus driver will often offer to ride around the block to give Ebony a few more minutes to get ready.  It would be an understatement to say that Ebony is not a morning person!

On most days, before this off to school routine is complete, our grandchildren Lucas and Evelyn (aka Devilyn) are arriving for Memere’s (my grandmother name) day care. Evelyn is the stereotypical redheaded two and a half year old, who is a whirling dervish, from the time she touches down at Memere’s until she is beamed back up to her parents at 6PM. And did I mention our baby granddaughter, Amelia lives with us along with her mom and dad? We watch her only on days ending in Y. At nine months old, with a speedy crawl, she’s become our resident “dustbuster”.

The day is filled with diapers, drop in visitors, occasional disasters and dinner. A drop in might be Freddy Love who first met us at a yard sale we held a few years ago. No telling when Freddy will come by but when he does he updates us about his wife who ran off with their pastor, or how he can cut down our trees for $800 or his plans to buy a million dollar house in Florida. Until his recent death, another drop by visitor was our friend Mr. Ray, self described as “the smartest man in the universe”.  Ever since he did some electrical work for us a decade ago, he’d stop by on a whim or by a directive from God for cake and tea. He was a man familiar with little miracles.  Not infrequently, Ms Georgia, the eccentric boarder who lives in the loft above the garage stops by at midnight to ask us to move the car or to drop off her rent money. In our universe, these unplanned visitors never fail to correspond with the disaster of the day. (lost pacifier, overflowing toilet, dog or kid or both barfing, pot boiling over, Evelyn disappearing, Evelyn in the snack cabinet, Evelyn wrapped in toilet paper and usually several of these concurrently).

So, dear Ebby, no buts about it, this butt is not a couch potato butt; but a butt worked to the bone.

Napkinnotewiki

Wiki Brain

 

Do you know the birthday of the actor who is the voice of Slinky in the movie, Toy Story?  Our daughter, Ebony, does. She also knows the birth dates and half birth dates of everyone she has ever met and the same about their neighbors and friends. Ebony knows trivial details about most celebrities.  Ebby,as she prefers to be called, remembers conversations in great detail know matter how long ago they happened, and the specifics of the settings in which they took place. Ebby can also spout off the dates of every medical appointment to which she or her siblings have ever been. She knows the day of the week any particular date falls on in years past and future. She’s a virtual “wiki brain”.

Ebony recently celebrated her sixteenth birthday, sweet sixteen.  And sweet she is.  When she came to us, Ebby weighed just four and a half pounds . Now she tops the scales at two hundred plus pounds. Who knew that such a tiny infant girl would grow up to be so large and in charge?   With the New Year, Ebby resumed a gym workout program at the local YMCA.  She is big and funny and wears lots of makeup . Sometimes I think she looks like a lady of the night . She thinks she looks absolutely stunning . She carries a bright pink shiny bag to enhance the look.

Ebby is a Facebook stalker.  Talk to her one time and suddenly, she is your best friend .  She will know everything about you…your birthday,  your half birthday, where you live, who lives with you, and many random details about your life. Don’t have any other friends either.  You have become hers and hers alone! She is a piece of work for sure.

Ebony has been diagnosed on the autistic spectrum scale.  She says she is “artistic” , not “autistic”.  And that she is.  Ebony creates beautiful pieces of art filled with vibrant color and amazing detail. She produces mounds of drawings, staying up into the wee hours of the morning working diligently. Ebony has sold some of her artwork to raise funds to purchase a magic hairspray that supposedly helps her hair to grow.

Ebby is also a master baker and she is the reigning Queen of Cupcakes.  Everybody, even random acquaintances, gets cupcakes for every occasion. She is crazy about the boy band , One Direction.  She takes weekly vocal lessons and it is not unusual to be awakened at 3 AM to the sound of her practicing her singing in true Aretha Franklin style. It is no wonder that her father dozes off at work most afternoons.   And we’re not really sure how to take this, but Ebony asked us if she could have sperms for pets. We told her she could but only if she agreed to walk and feed them everyday.

Ebby calls her dad FCC not to be confused with Federal Communications Commission. In this instance, it means French Canadian Cruel because her dad is French Canadian and she says he looks like Claude Frollo, the cruel master, in the Hunchback of Notre Dame. This is not so bad a comparison considering Ebby likens her sister, Salinna, to Squidward from SpongeBob SquarePants.  Ebby calls me Class of 1970 instead of Mom because it is the year I graduated from high school.

Ebony is able to recite lengthy passages of dialogue from every movie she has ever watched and she can often be heard talking to herself, repeating a favorite line over and over. “Excuse me. Are you looking at me?  Did you rub my lamp?  Did you wake  me up? Did you bring me here?  And , all of a sudden, you’re walking out on me?  I don’t think so!  Not right now!  You’re getting your wishes.” (Alladin).  There’s no kid like our dear Ebony; she is more than we could ever have wished for.

Napkinnote4-11-13

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.

 

 

 

unnamed (1)  blog   September 11, 2014

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”.

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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.

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Deliverance

Diarrhea and therapists…and the connection is?  Unless one aspires to a Zen world view, there probably is no connection. In our house, the two have been known to arrive on the same day, and we pray to be delivered from both. Here’s the thing about therapists. They’re not bad people and either are bill collectors, IRS agents, dentists, lawyers and proctologists.  Therapists come into our home to fix our broken kids who apparently can’t do anything right.  They can’t walk right, they can’ t see right, they can’t talk right, they can’t hold the crayon right, they can’t eat right and don’t even try to get them to use a pair of scissors right.  The only thing they can do right is have diarrhea.  They can do that perfectly.  The therapists don’t need to fix the diarrhea.  There isn’t anything wrong with it .

There are all kinds of therapists.  There are physical therapists , occupational therapists, vision therapists, therapists for special instruction, and my favorite, orientation mobility therapists. In our case,  a disorientation mobility therapist might be more appropriate. Therapists are well schooled. They study and become skilled in their profession, hoping to one day be of service to others. It all looks good on paper. They come into our home and after a thorough assessment, inform us that we need to make sure Rosey walks up the stairs alternating feet as she climbs up without holding onto the railing.  We need to accentuate and exaggerate the final letter sounds of words so that Alex can begin to say the whole word not just part of it.  For example, we need to say the word “cat” as “caT” with the emphasis on the final t. So basically, we need to yell the ending of all the words we say to him.  Also, we need to create a traffic light out of paper and when we are getting ready to go somewhere but aren’t quite ready yet, we tell Alex we are at the yellow light and almost to the green light. Really??  This is in a house where often, the first goal is to make sure that everyone not only has a shirt to wear but pants too. Or where cousin Megan’s visiting Rastafarian friend, shows up, dreadlocks to his knees, at our bathroom door searching for his missing ferret.

Therapists come to provide help and for this we are most grateful. There is a trade off, however. There is a loss of privacy and it is difficult to be at home in one’s own home.  On the plus side, Dexter and I have the perfect marriage. With so many outsiders so often in the house we couldn’t have an argument even if we wanted to have one. There is no chance of spending the day on the couch in pajamas, watching soap operas and eating bonbons. (Actually , I am not even sure what a bonbon is.)

We prayed for deliverance but we would be better off seeking the grace to be steadfast at the helm; to carry out each day’s ordinary and mundane responsibilities, faithfully and with love. And even when we don’t feel like it,  putting up with people like therapists who, by the way, are people carrying out their ordinary mundane responsibilities, even when they may not feel like it. No easy life for them when the kid they are trying to work with barely makes an inch of progress, if any at all; when there are more steps back than forward. After all, therapists have their own families, stress and worries and probably are often not comfortable being in other peoples’ homes. They are sacrificing everyday for the good of others and doing it with pleasant demeanor and a smile, whether they feel like it or not.

All this is a reminder of St. Therese of Lisieux, in her practice of the “little way”. St. Therese speaks of doing not extraordinary things but ordinary things with great love.  Perhaps the trick is not deliverance but to put up with each other and all the “do do” in our lives with love.

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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.