Blogging Friends…. Are you ready for Part Two of ‘An Angel Named
Shakespeare’?! So am I!! I’m beyond ready to be completely finished with ‘An
Angel Named Shakespeare’!! This fictional story started out as somewhat of a
little thing. Well…. As little as creating an emotionally-stirring fictional
story about a baby who is dying can possibly be!! I got carried away
somewhere down the line!! It happens!! Ah, such is the Life of an artist!! Peace out, Mary
Lou
Edited by Kara Kent!!
“Precious Angel”
Death is a part of
Life. The sooner you know that, the better off you’ll be. --Bob Dylan
Precious angel. That’s what our son, Shakespeare, is!! America has
come an amazingly long way in pediatric medical technology…. How can
neurosurgeons perform something as miraculous as reconstructing a baby’s skull
who was born with craniosynostosis {like what my dear friend’s daughter, Alayna had}, when there are neither any treatments
nor a cure for classic infantile Tay-Sachs disease? How can doctors ingeniously
surgically repair an infant’s congenital diaphragmatic hernia with a Gortex
patch {like what happened to my dear friend’s daughter, Whitney}, or stitch up the hole in
her diaphragm {like what happened to my dear friend’s daughter, Malinda}, when
there are neither any treatments nor a cure for classic infantile Tay-Sachs
disease? How could the God I love be so cruel to make Shakespeare suffer
physical pain…. And then take him away from us?
The date when Shakespeare received his classic infantile Tay-Sachs
disease diagnosis was obviously the worst day of our lives.
“I read somewhere Online that this genetic disorder progresses at a gradual pace….” I said to Bryan through wet, hot tears one evening
after he had just returned home from work, “But it is not happening slowly….
This classic infantile Tay-Sachs disease
journey that we are currently on feels like a train crash coming after
us at, like, two-hundred miles-per-hour….
It is all happening so fast…. Too fast….”
“I know….” was all that
Bryan could say, as wet, hot tears filled his eyes, while he cuddled with our
son.
“Eleven long months ago….”
I said, as wet, hot tears streamed down my face while feeding Brenda homemade
cheese-filled ravioli for her dinner, “Before
doctors diagnosed Shakespeare with classic infantile Tay-Sachs disease,
{when he was five months old},
Shakespeare made attempts to roll over, sit up unassisted and even crawl….
Because he is so smart….!! By the time of his diagnosis nine long
months ago, Shakespeare was smiling….
But one by one, all of these milestones in which I treasure have disappeared…. Already, classic
infantile Tay-Sachs disease has robbed Shakespeare of his ability to sit up without my protective
hands supporting him…. Roll over…. And now Shakespeare can no longer
hold his own head up…. He is only sixteen months old, Bryan…. Not four years…. Now Shakespeare has become plagued with seizures, he’s blind, and
our precious angel is virtually paralyzed….”
“We do not know where {or when} God is going to give our precious angel his wings….”
said Bryan, as wet, hot tears streamed down his face, while he cuddled with
Shakespeare, “However…. One thing is
for absolute certain…. We are going to keep taking this classic infantile
Tay-Sachs disease journey {Shakespeare’s Life} one day at a time, because time
is limited…. That being mentioned?
We’re going to keep taking this Life we live minute by minute
and cherish every minute we have,
because Life is precious…. Not only with Shakespeare’s existence, but with Brenda’s, as well…. We’re going
to keep treasuring and enjoying the small things…. We will never again take anything in Life for
granted…. We’re going to keep
treating every day as though it were Shakespeare’s last…. You see,
Desiree….? These are only a few of
the numerous lessons that Shakespeare
has {and is} teaching us…. And we are
definitely living them….!!”
To which I shook my head ‘no’, as I took Shakespeare from Bryan.
“Summing up this experience with lessons learned and the purpose
that we have found in our
quote-unquote ‘new normal’ seems unfair to Shakespeare….” I said, as wet, hot tears filled my eyes, “This is not about me or you…. Or even anybody’s faith in God…. This classic
infantile Tay-Sachs disease is happening
to poor Shakespeare…. Not us…. He’s the one who is ultimately
going to suffer and…. Die…. From it….”
“That is a good perspective….”
said Bryan, as wet, hot tears fell down his face like rain, while he fed Brenda
her cheese-filled ravioli, “And you are absolutely
right…. This is not about us….!! No…. It is about Shakespeare…. But he will not only suffer and…. Die…. No matter how
short our son’s Life is, it will
be an existence of value and meaning…. Am I right….? Shakespeare’s sweet smiles and soft, gentle touch are enough for his Life to have purpose…. Am
I right….? It is enough…. Shakespeare’s Life—no
matter how small or short—has had an impact on a wider array
of people than many older, wiser human being’s existences ever
will…. Don’t you see, Desiree….? Shakespeare has taught us so much about Life and living….!!”
“I do not know if I was chosen to be the Mama of this precious angel
or if Shakespeare’s classic infantile
Tay-Sachs disease is as random as
him inheriting your blue eyes rather
than my green….” I said, as wet, hot
tears flowed down my face, while I cuddled with our son, “Everybody wants there to be a reason for this experience,
for Shakespeare not to suffer in vain…. Yes…. I do see that Shakespeare’s Life has enriched
our lives and taught us things which are very
different than a healthy child’s
{like Brenda’s} Life does…. So, yes, I do see….”
“‘Life is not measured
by the number of breaths you take, it is measured by the moments that take your
breath away.’….” said Bryan, as his eyes glistened with tears, “Maya Angelou spoke those words…. I absolutely
love this quotation!! What I am trying
to say is that, in the end, Shakespeare’s Life
will be measured by memories, not by years…. And we are definitely living
them…. You know that, right, Desiree….?”
“Yes….” I said, as wet,
hot tears streamed down my face, while I cuddled with Shakespeare, “I do…. And it is absolutely true…. We do
not know where {or when} God is going to take Shakespeare away from us…. However…. We do
know how to cherish every day that we
have with everybody who we love….!!
Especially Shakespeare and Brenda….”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Because, to quote Bob Dylan from his song, which he actually titled
‘Precious Angel’, {Bryan and I absolutely love this prolific artist’s poetic
songwriting, music, singing}…. ‘Precious
angel, under the sun; How was I to know you’d be the one; To show me I was
blinded, to show me I was gone; How weak was the foundation I was standin’
upon? Shine your light, shine your light on me; Shine your light,
shine your light on me; Shine your light, shine your light on me; Ya know I
just couldn’t make it by myself; I’m a little too blind to see’…. As it turned out, Shakespeare is my precious angel under the
sun!! But…. How was I to know he would be the one to show me I was blinded, to
show me I was gone? Because…. How weak was the foundation I was standing upon?
Because…. Shakespeare did shine his light on me!! And even my son’s mortality
has not made this stop!! For he continues to shine his cherubic light on me!!
Because…. You know I just couldn’t make it by myself, I’m a little too blind to
see!!
For Shakespeare would teach me so much without ever saying any
words!!
“I wuv you, butter!!” said Brenda, six long months
later, as she wrapped her two-year old arms around Shakespeare and planted cold
germ-covered, sloppy, wet kisses on his chubby, cherubic cheeks, “Shakes, Shakes, Shakes, Shakes, Shakes!! Oh, I wuv you!!”
“Yes….” I said, as wet,
hot tears filled my eyes, while I cuddled with Shakespeare, “You love your brother, huh….?”
“I cannot believe that Shakespeare is twenty-two months old, already!!” exclaimed Bryan, who now works
from home, “And Brenda is nearly three!! Where does the time escape to, outer space?!”
“I dunno!!” said Brenda,
as she shrugged her shoulders and threw both arms up in a comical fashion.
“Yeah, why can’t you—to quote Bob Dylan—‘stay forever
young’….?” I asked Brenda, as I smiled weakly through wet, hot tears while
I cuddled with Shakespeare.
“I dunno!!” repeated
Brenda, as she planted even more cold germ-covered, sloppy, wet kisses on
Shakespeare’s chubby, cherubic cheeks, “I wuv
Shakes!! He is the best butter!!”
“Alright, Brenda, that’s enough loving on Shakes….!!” I protectively and softly said through my wet, hot
tears, as I cuddled with Shakespeare, “You have a cold, remember….? We do not want
to get Shakes sick, too….!!”
Then Bryan pulled a coughing Brenda away from Shakespeare so that
they could happily mold homemade play dough creations together.
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Why was I crying? Because I could literally feel my heart breaking,
shattering, aching on account of Brenda’s little thoughts, feelings and
emotions. ‘Ignorance is bliss’…. So they say. Brenda had absolutely no clue
that Shakespeare was here with us today, but would be physically gone in the
near foreseeable future. How do you possibly explain mortality, loss and grief
to an almost three-year old child? How can I expect my daughter to comprehend a
cruel Reality that I did not understand? I was also crying because Brenda never
once looked at Shakespeare and saw his classic infantile Tay-Sachs disease.
No…. When Brenda looked at Shakespeare, she only saw her baby brother!! It was
as though my precious angel’s seizures, vision loss, paralysis and
gastrostomy-tube feedings were absolutely ‘normal’ {whatever ‘normal’ is} for
Brenda!! It was as though she never thought twice about Shakespeare’s classic
infantile Tay-Sachs disease!!
I learned a lot from Brenda’s innocent example about what
unconditional love looks like!!
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Sadly, Brenda’s unconditional love toward her baby brother resulted in sharing
those nasty, pesky cold germs with him. It was bound to happen sometime,
anyway…. For, no matter how much Bryan and I protected Shakespeare from
Brenda’s Wintertime cold germs, we did obviously all inhale the same natural
oxygen. I could swallow vitamins. As a germaphobe with self-diagnosed obsessive
compulsive disorder, I may or may not have run lavender, tea tree, lemon,
frankincense and vanilla-scented essential oils in every single room of our
home. I could try my very best to keep Brenda away from Shakespeare…. But that
task was obviously easier said than done. One morning, Shakespeare’s little
button nose ran, which swiftly developed into a concerning, deep cough.
Why, oh why, did Brenda have to share her nasty, unwanted, Sunday
school cold germs with Shakespeare?
“I just called and made an appointment….” I said to Bryan,
as I held Shakespeare, “You know, with Dr.
Hopf? Nurse Practitioner Rachaeli sounded very concerned {and I am,
as well}, about Shakespeare’s cold
symptoms under the circumstances
of his classic infantile Tay-Sachs
disease, so he has an appointment
to see Dr. Hopf at Compassion & Empathy Pediatrics as early as noon today.”
“That is good!!” said
Bryan, in an effort to avoid sounding worried about Shakespeare, “More often than not, doctors can’t find
an opening so soon!! Do you need me to come with? Remember your first
long day of seemingly endless doctor’s appointments for
Shakespeare, and I was not there? Do you need me to come with this
time?”
“No….” I said, as wet, hot
tears filled my eyes at the emotionally stressful memory, while Shakespeare let
out several deep coughs and then gasped for air, “I need you to stay home
with Brenda…. Neither mine nor your
parents want this nasty cold…. And Brenda does not need to get our babysitter, Angela, sick,
either. Besides…. We do not need
Brenda to catch who-knows-what-else
in Compassion & Empathy Pediatrics germy
waiting room….”
“You have a valid point,”
said Bryan, as he kissed me ‘goodbye’ on my lips, “Good luck, Desiree!!”
“Dr. Hopf will probably just prescribe him some antibiotics
or something….” I said, as I blinked back wet, hot tears, tried to hide my
anxiety and walked out the door while cuddling with Shakespeare, “What is the worst thing that can happen….?”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! I swallowed hard. ‘What is the worst thing that can happen?’ I should have
never, ever, ever, ever, ever, ever asked that question, especially when it
concerned classic infantile Tay-Sachs disease. I knew that, and so did Bryan.
But not because {like in a Hollywood comedy}, something would explode
immediately after we asked that question. This was not at all about being
superstitious!! ‘What is the worst thing that can happen’ to Shakespeare? Wet,
hot tears streamed down my face, as I imagined several heartbreaking
possibilities. Uh, a cosmic Life-threatening seizure? Hmmm, pneumonia? Uh,
Shakespeare’s inevitable mortality? Because, based on my Google-search
information about classic infantile Tay-Sachs disease, a common cold with these
precious angels is not simply a nasty cold.
I felt frightened as I prayed to God through my wet, hot tears while
driving toward Compassion & Empathy Pediatrics.
“You’re an educated Mama Bear,
so I think that you already know what it is I’m going to say, Desiree….” said Dr. Hopf, after she examined my son and
listened to his difficulty breathing.
“Shakespeare has pneumonia….”
I said, as I blinked back wet, hot tears, while cuddling with my son and wiping
his snotty nose.
“Yes….” said Dr. Hopf, as
wet, hot tears filled her eyes, “And I think
that you already know what it is I’m going to say next….”
“Pneumonia can be among one of the most common causes of…. Death….
For precious angels like
Shakespeare….” I said, as wet, hot tears flowed down my face, while I cuddled
with my son and grimaced at his deep coughing, “This is really, really, really bad….”
“Yes….” said Dr. Hopf, as
she blinked back wet, hot tears, “But you most
likely do not know what I am going to say next….”
“Please don’t tell me that
Shakespeare is…. Dying….” I said, as wet, hot tears ran down my face, while I
cuddled with Shakespeare and I listened to his difficulty breathing, “I mean, I know that he is…. Dying….
But not right now…. Shakespeare is
only twenty-two months old…. Not four years…. We haven’t even celebrated
Shakespeare’s second birthday….”
“There is…. A chance…. But
I am not gonna lie to you, Desiree, it is looking very small…. That Shakespeare
will somehow overcome this bout of pneumonia….” said Dr. Hopf, as
she simultaneously choked on her words and her tears, “I have met {and cared for} other angel babies
just like Shakespeare, remember….? It
is really, really, really bad…. I will take the liberty of calling and making an appointment with our pediatric
pulmonologist, Dr. Karl…. He will examine
Shakespeare today….”
Dr. Hopf paused for a nanosecond.
“I’ve mentioned this before, and I’ll say it again, I think
that you need to seriously consider signing
Shakespeare up for pediatric hospice care, Desiree….” Dr.
Hopf slowly and gently said, as she could not hold back her wet, hot tears.
I stubbornly shook my head, ‘no’.
“Hospice care….?” I said,
through my own wet, hot tears, as I held Shakespeare close, “As in we are talking about…. Life….
And…. Death…. Decisions…. For
Shakespeare….? Again….?”
“Yes….” said Dr. Hopf, as
she blinked back wet, hot tears, “We are….
It is time, Desiree…. I am going to take the liberty of bringing
you papers for hospice care to sign….”
“I…. I…. I…. I…. I…. I can’t….” I stammered, through my
vision-blurring wet, hot tears, as I cuddled with Shakespeare, “Not sans discussing it with Bryan….”
“I know that this is difficult….” said Dr. Hopf, “I understand
your thoughts, feelings and emotions…. I
truly do—”
“No, you do not ‘understand’
my thoughts, feelings and emotions….!!”
I interrupted Dr. Hopf, though wet, hot tears, as I cuddled with Shakespeare, “Your
two sons and daughter are perfectly healthy….!! They do not suffer from classic infantile Tay-Sachs disease….!! Your two sons and daughter
aren’t precious angels….!! You will
not outlive them….!! Am I right….? So do not tell me that you ‘understand’ my complex thoughts, feelings and emotions….!!
Because…. You do not understand….!!”
“Please don’t think that just because Indio, Exton and Avri aren’t angel babies who have classic infantile Tay-Sachs disease….”
said Dr. Hopf, as her own wet, hot tears of compassion flowed, “It means that I do not understand….!! I am so, so, so very sorry, Desiree….”
Then, I just speechlessly stood there, as wet, hot tears streamed
down my face and I held Shakespeare close.
“Yes, you should talk this
over with Bryan….” said Dr. Hopf, as she wiped away wet, hot tears, “I absolutely agree…. I will still give you the papers for hospice care,
though. But do not take very long to sign
them…. Alright….?”
Then, Dr. Hopf temporarily exited Shakespeare’s room.
“Alright, now here are three
very important things,” said Dr. Hopf, after she returned to Shakespeare’s
room, “Your angel baby’s pediatric
hospice care papers…. A written
prescription for Shakespeare’s
antibiotics…. And an appointment with
Dr. Karl at 1:30 PM this afternoon.”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! A pediatric pulmonologist? How many doctors did Shakespeare need? Because,
in such a seemingly short span of time? My baby boy had not only attended
appointments with Dr. Hopf {our pediatrician}. But Shakespeare also had
appointments with Dr. Manning {a pediatric geneticist}, Dr. Wivell {a pediatric
ophthalmologist}, and Dr. Damon {a pediatric neurologist}. Now Shakespeare also
had an appointment to be examined by Dr. Karl, as well?! Am I forgetting and
leaving anybody out?! In the course of a seemingly long twenty-two months,
Shakespeare had been examined by five doctors…. Including our pediatrician?!
Forget ‘how many people does it take to change a light bulb’. That joke is
lame, anyway. How many doctors does it take to care for a precious angel?!
Apparently five…. And counting.
Now I have an accurate idea of how other Mamas of medically fragile,
special-needs, Beautifully Unique children feel.
“Shakespeare and Desiree?” called out Nurse Cindy from
the doctor’s office doorway.
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! I knew what it felt like to be afflicted with pneumonia. How? Because I,
too, suffered from pneumonia several years ago. I coughed, I could not breathe,
I gagged until I eventually vomited everything up, I had a fever, I suffered
from diarrhea. I was afflicted with pneumonia for several weeks. It is a nasty
illness, one that I would never wish upon my worst enemy. Whenever friends or
family—such as Natalie, Chris or Gemma—are afflicted with pneumonia, I feel
their physical misery. Because I have been there, done that. But this time, it
felt deeply and painfully personal. Why? Because this time, it was Shakespeare
who had pneumonia. My precious angel.
This time, I was feeling the physical misery {feeling a Kindred
Spirit connection} with my own son.
“Hi, I am Dr. Karl,” he
said, “Let’s listen to Shakespeare’s lungs. Hmmm…. I am deeply concerned about his breathing.”
“Shakespeare is afflicted
with pneumonia, right….?” I said, as
I chocked back wet, hot tears while sitting and holding my son on my lap.
“You make an excellent Sherlock Holmes, Mama Bear!!” said Dr. Karl, “Yes. Shakespeare is, in fact, afflicted
with pneumonia. He’s suffering from many—if not all—of the symptoms. A cough with phlegm….
Difficulty breathing, such as fast breathing, shallow breathing, shortness
of breath or wheezing…. A fever. Although he is fine right now, Shakespeare may also eventually suffer from dehydration,
so watch that closely and give him plenty of fluids to drink. Whether
it be in the form of breast milk, baby formula or even water. Although pneumonia is not uncommon
in normal small children—and they usually survive it—your angel baby isn’t, in any way, shape, or form ‘normal’, because of his classic infantile Tay-Sachs disease. I
am ordering you up some oxygen tanks to take home. You will get them today.”
“Oxygen….?” I said, as
uncontrollable, wet, hot tears rained down my face, while I cuddled with
Shakespeare, “You mean his health is deteriorating that much….?”
“Yes,” said Dr. Karl, “It is
that bad. I am sorry. I wish I had better news for you.”
Then, Dr. Karl smiled hugely.
“Ah, but I am confident that everybody who Shakespeare meets feels
like they have been touched by an angel!!”
he exclaimed, “I mean…. I know I sincerely feel like I’ve been touched by an angel!! And I hardly even know Shakespeare!!”
To which I smiled weakly through wet, hot tears, as I was given my
baby boy’s oxygen tanks.
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Hospice care? Once Bryan and I discussed signing Shakespeare up for their
wonderful, compassionate, loving services, we may as well have also planned his
memorial service, funeral, burial or cremation too. See, my dear friend, Nicole,
was afflicted with multiple sclerosis. Once they signed her up for hospice
care, sadly, she passed away shortly thereafter. The same exact thing also
happened to my Grandpa when he was battling cancer. The more time that passed
by, the more surreal Shakespeare’s inevitable mortality felt. No, I wasn’t
‘spiraling’ from one worry, thought, feeling and emotion to another. Not this
time. Hospice care leads to death, which leads to a memorial service/funeral,
which leads to burial or cremation. Although I have heard that some people can
successfully ‘survive hospice care’ {and actually be removed from their
services}, this was all I knew, the only cruel Reality that I had any experience
with. I wept wet, hot tears as I drove my ‘old’ 1970’s baby blue-painted Ford
pickup truck from U-Bag Them Grocery Store’s pharmacy for Shakespeare’s
antibiotics.
Then, I finally went home.
“As emotionally stressful
and hard as this next step will be….” Bryan slowly said, as wet, hot tears flowed
down his face, while he cuddled with Shakespeare after I told him about the
hospice care papers, “Dr. Hopf is absolutely
right…. You know that we need to sign Shakespeare up for hospice
care….”
“Yes….” I said, as
uncontrollable wet, hot tears streamed down my face, while I embraced an
excitable Brenda, “I guess we cannot avoid the inevitable…. Right….?”
“We cannot keep avoiding the elephant in the room….” Bryan gently said, as wet, hot tears
streamed down his face, while he cuddled with Shakespeare.
“I know….” I said, as wet,
hot tears flowed down my face, “It is just
so hard…. I…. I…. I…. I…. I…. I can’t sign Shakespeare’s hospice care papers….”
“I understand….” Bryan
softly said, as he brushed away wet, hot tears from his eyes, “I cannot find it within me to sign
Shakespeare up for hospice care,
either….”
Then, Bryan gave our precious angel to me.
“….But I will sign Shakespeare’s hospice papers, anyway….” he gently continued, “I can even forge your signature, if you want me to….”
“That is illegal….” I
said, as wet, hot tears blurred my vision, while I cuddled with Shakespeare,
“And you know it…. Not that I care about laws, rules and regulations at this point, or anything…. Go
for it….!!”
To which Bryan looked at me quizzically, as his eyes glistened with
tears.
“Yes…. I—a law-abiding, rule-following individual—am giving you full permission to forge my
signature….” I said, as I wept wet, hot tears while I cuddled with
Shakespeare, “Go for it….!! Thank-you
for always taking such good care of me, Bryan….”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! So reluctantly, yet dutifully—with a black-colored pen—sign my baby up for
hospice care, Bryan did…. Yes, while using both of ‘our’ signatures!! Wet, hot
tears filled my eyes. I love how Bryan not only always takes care of me, but
despite his own real, raw, valid thoughts, feelings and emotions about
Shakespeare being afflicted with classic infantile Tay-Sachs disease, he is somehow
amazingly strong!! I smiled a weak smile at that thought!! I love how despite
shedding his own wet, hot tears, Bryan is still protective of mine!! Which I
thank the Lord for!! I love how Bryan is never hardhearted about my motherly
thoughts, feelings and emotions concerning Shakespeare!!
I have been so blessed by the man who I call my soul mate!!
Ring!! Ring!! Ring!!
Ring!! Ring!!
That was our home telephone ringing the very next afternoon.
“Hello?” I said, as I
answered it while cuddling with Shakespeare.
“Hi, I am Nurse Avery from
Clarence Odbody Pediatric Hospice Care
Center!!” said the warm, compassionate, loving voice {with a southern
accent} on the other line, “Is this Desiree?
I’m calling to discuss Shakespeare’s situation. But before you explain your angel baby’s current circumstances, I already know…. Dr. Hopf informed me of everything!!
I am calling to see when would be a good time for my home visit
with Shakespeare?”
All I could hear was ‘Clarence Odbody Pediatric Hospice Care Center’.
“Um, hold on….” I suddenly
said, as my eyes welled up with wet, hot tears, “Bryan….? Can you come here,
please….? Bryan….?”
“Yes?” said Bryan, as he
walked into our great room with Brenda happily squealing and riding on his
strong shoulders.
“I’m sorry, Nurse Avery, I
do not handle Life and…. Death…. Decisions….” I explained, as
wet, hot tears flowed down my face while I held Shakespeare tight, “My husband, Bryan does….”
“I wholeheartedly understand
that,” said Nurse Avery, “Making Life and
death decisions can be difficult
for anybody.”
I handed Bryan the telephone, as wet, hot tears streamed down my
face.
“Hi….” said Bryan, as he
fought his own wet, hot tears in an effort to stay emotionally strong.
“Yes, I was calling to see when would be a good time
for my home visit with Shakespeare?” repeated Nurse Avery.
“Uh, do you have an opening for today….?”
asked Bryan, as he blinked back wet, hot tears.
“Yes, at 3:00 in the afternoon,” said Nurse
Avery, “Will that time work for you, Shakespeare and Desiree?”
“Yes….” said Bryan, as he
blinked back wet, hot tears, “3:00 PM
is absolutely fine….”
“Good!!” said Nurse Avery,
“I will see you then!! Goodbye, Bryan!!”
Ding dong!!
That was our doorbell—Nurse Avery had arrived—Bryan answered it.
“Well, hello,
Shakespeare!!” exclaimed Nurse Avery, as she smiled warmly at my son who was
hooked up to an oxygen tank while I somehow cuddled with him, “You are so freakin’
handsome, just like your Daddy!!”
Then, Nurse Avery turned to me.
“May I hold Shakespeare?”
she asked, with a warm smile written on her face, “It is the best way, I have found, for me to bond
with these precious angels!!”
“Yes….” I answered, as
wet, hot tears flowed down my face, “You may
hold Shakespeare….”
Then—as I smiled weakly through wet, hot tears—I passed my baby boy
to Nurse Avery, his oxygen tank and all.“Aw, Shakespeare is such a doll!!” exclaimed Nurse Avery, “I
absolutely love his baby blues, his blond hair, and his cherubic
face!!”
Then, Nurse Avery got straight to work.
“So, Shakespeare’s story
is that he is afflicted with classic
infantile Tay-Sachs disease,” said Nurse Avery, as she cuddled with my son,
his oxygen tank and all, “Ah, I am well familiar with this genetic disorder.”
“But I thought that classic infantile Tay-Sachs disease is rare….” I said, as I blinked back wet,
hot tears, “Yet, even our pediatrician,
Dr. Hopf, has heard of it….”
“This genetic disorder is
rare….” said Nurse Avery, as her eyes filled with wet, hot tears, while holding
Shakespeare, “Yes…. Not only have I heard of Tay-Sachs disease….
But…. I have actually also dearly loved a precious angel throughout my
Life…. But not as your pediatric hospice care nurse…. See, several years ago, my son, Conner,
was afflicted with classic infantile Tay-Sachs disease….
When you walk through the horrific journey of watching your own child gradually fade farther and farther away….? You’ll change
eternally…. For the better….!! When you see your precious angel
through a terminal illness….? You’ll
feel motivated to do and be so much more than you were before….!! It was because of Conner that I became Nurse Avery….!! In my son’s memory, I even founded, created and helped build
Clarence Odbody Pediatric Hospice Center….!! However…. I did not want to be the chief executive officer or president
of Clarence Odbody Pediatric Hospice Center…. Which worked out perfectly for me, because I was already
Nurse Avery, with the education, training and experience….!!”
She paused for a nanosecond.
“You and Bryan have heard
the traditional story about children who were born with Tay-Sachs disease,
right….?” she continued, as wet, hot tears flowed down her face, while cuddling
with Shakespeare, his oxygen tank and all, “They are angels awaiting their wings
just like Clarence in It’s A Wonderful Life….!! As a matter of fact…. Our pediatric hospice
care center is named after Clarence Odbody from It’s A Wonderful Life….!! Because we serve
far too many children who {like Clarence} are angels awaiting their wings….!! And…. Although they each suffer from various terminal illnesses…. We serve children like Conner…. An
angel awaiting their wings…. And….”
Nurse Avery paused for a nanosecond.
“Shakespeare….” she slowly
said, through her wet, hot tears, “Who is an angel awaiting his wings.”
“Wow….” said Bryan, as he
blinked back wet, hot tears, “That is neat,
heartfelt and brilliant…. We absolutely love It’s
A Wonderful Life around here….!!”
“So, I understand—more
than anybody—your thoughts, feelings and emotions
about Shakespeare….” said Nurse Avery, as she blinked back wet, hot tears,
while cuddling with my son, “Conner earned
his angel wings at the tender age
of twenty-two months…. So, I get your thoughts, feelings and emotions, because I’ve walked a mile in your shoes….”
“Oh my gosh….” I gasped in
an emotional panic, as my own uncontrollable wet, hot tears fell, “Did you just
say…. That Conner died at…. Twenty-two months old….? That…. That…. That…. That is how old Shakespeare
is right now….!! Maybe it’s a sign…. An incredibly bad omen….!! Oh, Bryan….
I know that Shakespeare’s health is rapidly deteriorating, but this…. This is really, really, really
bad….!! Oh, I do not want to lose Shakespeare….!!”
Then, I speechlessly took him from Nurse Avery’s loving arms and I
cuddled with my son, as his oxygen tank worked its miracles.
“Calm down, Desiree….”
Bryan gently said through his own wet, hot tears, as he bounced a happily
squealing Brenda on his knee, “We’re not
superstitious people…. God’s grace,
mercy and love toward us—as well as
Shakespeare—are far greater than any signs
or bad omens….!! You know that….”
“As your pediatric hospice
care nurse, I have also loved on
some precious angels like Shakespeare and Conner….” said Nurse Avery, as wet, hot tears flowed from her eyes,
“These children are always, without a doubt, the hardest—yet
also the most beautiful—‘patients’
that I serve…. It might comfort you to know that my oldest precious angel actually earned his wings at age four years old…. So you truly
never know…. Nothing is guaranteed or certain with classic
infantile Tay-Sachs disease…. Just like Life
itself…. We’re not promised tomorrow….
We only have today….”
“That is very profound, and wise….” I said, as I blinked back wet, hot tears while cuddling
with Shakespeare, his oxygen tank and all, “We’re not promised tomorrow…. We only
have today…. It is true….!! I know that…. It is just…. So hard….”
“I know….” said Nurse
Avery, as wet, hot tears flowed down her face, “It sucks….”
Then, Nurse Avery gently placed her hands against Brenda’s ears.
“Classic infantile Tay-Sachs
disease is hell….” she said,
through wet, hot tears, “It’s absolutely
alright to say that…. And you damn well
know why…. Because it’s absolutely true…. Classic infantile
Tay-Sachs disease is hell….”
Then, Nurse Avery removed her hands from Brenda’s ears and smiled
warmly at her.
“So, I was told that
Shakespeare is afflicted with pneumonia….” said Nurse Avery, as she
wiped away wet, hot tears, “Which explains
his need for oxygen tanks…. Conner battled
pneumonia throughout his Life, as
well…. Sometimes he overcame that respiratory illness…. There were little victories along the way…. But, then….”
Nurse Avery’s voice trailed off, as though she was simultaneously
trying to stay emotionally strong and hide something from me.
“Hello, Brenda, I am here at your home to help love, serve, and take very good care of Shakespeare,”
said Nurse Avery with a warm smile written on her face, “Do you love Disney princesses like most little girls your age? Because, some don’t,
and that is absolutely alright!!”
“Yeah, I do wuv Disney Pwincesses!!” said Brenda, with a sweet smile written on her
face.
“Me too!!” said Nurse
Avery, with a warm smile written on her face, “Who is your very favorite Disney princess? Do you have one?”
“Cindy,” said Brenda, “But
that is not her wheel name!!”
“It’s not her real name?”
said Nurse Avery, with a warm smile written on her face, “Hmmm…. Let me guess…. Is
your favorite Disney princess…. Cinderella?”
“Yeah, it is!!” squealed Brenda, as she jumped up
and down with excitement.
“Ah, I thought so!!” said Nurse Avery, with a
warm smile written on her face, “Cinderella.
That’s a long and hard name to say, huh? My very favorite
Disney princess is Ariel from The Little Mermaid!!”
Then, Nurse Avery paused for a spit nanosecond.
“I have something for you in my big bag of medical papers
and ‘doctor’ equipment, Brenda!!” said Nurse Avery, as she reached into her red
daisy-print backpack, “A large-sized
stuffed ‘Cindy’ from the Disney
Store!!”
“Wow….!!” exclaimed Bryan,
as his, eyes glistened with tears, “What do you say to Nurse Avery,
Brenda….? Huh….? Can you say ‘thanks’….?”
“I wike you!!” said
Brenda, with a sweet smile written on her face.
“Yeah?” said Nurse Avery,
with a warm smile written on her face, “I like
you as well, Brenda!!”
“I think that was close enough
to a ‘thanks’….!!” I said, as wet,
hot tears streamed down my face, while I cuddled with Shakespeare, his oxygen
tank and all, “You did not have to give Brenda a Cinderella doll, Nurse Avery!!”
“I know!!” said Nurse
Avery, “I wanted to!! After all, Brenda has had a hard Life because of Shakespeare’s
classic infantile Tay-Sachs disease, as well!!”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! I liked Nurse Avery, as well!! Amongst the many complex challenges of
loving a terminally ill, special-needs, medically fragile, precious angel is
that our entire Life seemingly revolved around Shakespeare. Although Bryan and
I made attempts to include Brenda in our lives—we never ignored her—she still
got left out. Because Shakespeare was afflicted with classic infantile
Tay-Sachs disease. Brenda seemed ‘normal’ {whatever ‘normal’ is}!! Shakespeare
suffered from seizures. Brenda seemed perfectly healthy!! Shakespeare needed
gastrostomy tube feedings. Brenda ate her food orally!! And now Shakespeare
needed oxygen tanks. Brenda inhaled the same natural air as Bryan and I!! To
which I am obviously eternally grateful for!! But the one-on-one attention that
Nurse Avery gave Brenda was very much needed!! I blinked back touched, happy,
wet, hot tears.
Being a pediatric hospice nurse is not only Nurse Avery’s calling,
but she was definitely born to do what she does!!
“Now, I understand that
this next step is going to be emotionally stressful and difficult….”
said Nurse Avery, “Because {as a Mommy,
not only have I personally been
there, done that}, but, as your pediatric
hospice care nurse, I’ve also
walked several sweet families through
this next step….”
“I already know what you
are going to say….” I said, as wet,
hot tears flowed down my face, while I cuddled with Shakespeare, his oxygen
tank and all, “But…. I do not want to
talk about it…. You know? About Shakespeare’s memorial and funeral services…. About burial
or cremation options…. I cannot ‘go there’….”
“I understand….” Nurse
Avery gently said, as she fought back wet, hot tears, “Believe me, I do…. But
you cannot avoid the inevitable….”
“I don’t want to do it or ‘go there’, either, Desiree….” Bryan softly said, as he blinked back
wet, hot tears while embracing Brenda, “Who would?
This is Shakespeare—our own son—that
we’re talking about…. But we have to do it, anyway….”
Then, Bryan turned to Nurse Avery.
“Desiree is not handling any Life and…. Death….
Decisions,” Bryan protectively said, as he wiped wet, hot tears from his eyes,
“May I be the only parent who signs your papers for Shakespeare’s…. Funeral home….?”
“Absolutely!!” answered
Nurse Avery, with a warm, compassionate smile written on her face, “We will simply
make believe that you are a single Dad!!”
And sign papers for R.I.P. Funeral Home Bryan did…. While all three
of us shed wet, hot tears.
“Here are my cell-phone, work phone and home phone numbers!!” said Nurse Avery, as she handed them to Bryan
before leaving our home, “I will make
myself available no matter what
during an emergency…. Should that happen.
Do not hesitate to call me!! Shakespeare seems as well as can be expected, considering
the complex circumstances of his classic infantile Tay-Sachs disease and
that pneumonia.”
“Goodbye, Nurse Avery….” I
said, as wet, hot tears streamed down my face while I cuddled with Shakespeare,
his oxygen tank and all.
“I’ll return to your home for a follow-up appointment tomorrow, as we monitor our children very
closely at Clarence Odbody Pediatric
Hospice Center!!” said Nurse Avery, as he looked at Bryan, “What time will work best for you?”
“10:00 AM,” answered
Bryan, “That time is not too early, yet it’s also not too late.”
“I will see you then!!” said Nurse Avery, as she kissed
my son on his soft round head, “Goodbye
Shakespeare!! See you later, Brenda….
Enjoy your ‘Cindy’ doll!!”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Nurse Avery promised us that during an emergency, she would drop
everything and become available. But what about at an ungodly hour in the
middle of the night? Could Nurse Avery suddenly wake up, shower, get dressed
and drive to our home before it was too late? What if she had been visiting,
loving on and caring for yet another terminally ill child? Because, after all,
Shakespeare was not Nurse Avery’s only ‘patient’. Could I truly trust her word
that—like Dr. Quinn from Dr. Quinn,
Medicine Woman—she would arrive at our home? Shakespeare desperately needed
Nurse Avery. For, regardless of his oxygen tanks, my baby’s breathing was
progressively growing weaker and weaker. Despite Shakespeare’s antibiotics, his
deep cough persisted. I needed Nurse Avery. All of these thoughts, feelings and
emotions ran through my crazy, never-shuts-down brain as though they were
competing in a marathon.
I cuddled with Shakespeare {his oxygen tank and all}, in an attempt
to comfort him, as wet, hot tears flowed down my face.
“I am here….” said Nurse
Avery, with wet, hot tears filling her eyes before she listened to
Shakespeare’s shaky breathing, deep coughing, and rapid heartbeat, “Keep him comfortable…. Continue to cuddle with Shakespeare…. You are doing great, Mommy…. Keep comforting
your precious angel….”
“Thank-you for arriving so fast, Nurse Avery….” said
Bryan, as wet, hot tears streamed down his face.
“Any time….” said Nurse
Avery, through her wet, hot tears, “I will not lie to you, Bryan and Desiree…. Shakespeare’s condition is obviously
dangerously severe…. I honestly
do not know how much time your precious angel has left
on this Earth before he earns his wings…. I have even sent Dr. Hopf—who is a friend of mine—several urgent-sounding
text messages informing her of
Shakespeare’s situation…. She will arrive at your house soon….”
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! It was his time…. I could feel this deep down within my broken heart, soul
and mind. Call it being prophetic. Call it intuition. Call it being a psychic sort
of like Shawn Spencer from Psych.
Call it whatever you want. I did not care. I just wished that my unsettling
feeling of Shakespeare nearing his time never existed. But when you love a
child dearly, unfortunately your Mama’s instincts are absolutely correct. At
approximately 2:00 AM {while Bryan, Dr. Hopf, Nurse Avery an incredibly sleepy
Brenda, my parents, Leo and Brenda, and Bryan’s parents, Harold and Lillian
were at his side}, Shakespeare inhaled his final breath as I cuddled with him.
It felt like a farewell ‘party’.
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! My baby boy went Home to be with his Lord and Savior, flying far, far away
toward a Land called Heaven where he can truly experience freedom!! No more
classic infantile Tay-Sachs disease, no more seizures, no more oxygen tanks, no
more gastrostomy tube feedings!! A Land where physical pain, heartache and
tears vanish!! Shakespeare can run, he can play, he can truly laugh!! My son is
face-to-face with Jesus!! I can only imagine…. Shakespeare is now an angel in
the purest sense of the word!! He’s flying high above us and looking in from
time to time!! With wet, hot tears streaming down my face, I held Shakespeare’s
cherubic right hand while Bryan held his cherubic left hand as our baby boy
earned his angel wings at last.
Yes, we both learned the wisdom of a lifetime from him during just
twenty-two way-too-short months!!
Three days later, inside the sanctuary of Fearfully &
Wonderfully Made Church, I bravely gave my son’s eulogy during his memorial
service….
If love was a cure for
classic infantile Tay-Sachs disease, Shakespeare would live forever.
Precious angel. That’s
what my son, Shakespeare, is!! Because, heedless to contrary opinion?
Shakespeare was not a tragedy. Because, from his conception, to his birth, to
his short-lived Life? Shakespeare was anything but a tragedy. To use my phrase
{which I coined}, Shakespeare was Beautifully Unique!! He is indeed a precious
angel!! Shakespeare was {to quote Psalm 139:14 from the Bible} ‘fearfully and
wonderfully made’!! As are every single precious angel who is ever born with
classic infantile Tay-Sachs disease!! Shakespeare was not a tragedy…. Classic
infantile Tay-Sachs disease is a tragedy. Our loss and our grief because we
will obviously miss Shakespeare so bad it hurts? That is a tragedy. Because
Shakespeare {whether my son could comprehend it or not} lived like he was
dying!! Yes…. Just like in the Tim McGraw song!! Now…. Shakespeare obviously
never experienced the adrenaline rush of skydiving!! But he did {while still
growing and developing in the safety of my uterus when I was barely showing} go
rocky mountain climbing!! It was there, actually, where we {I} watched an eagle
as he was flying!! Now…. Shakespeare obviously did not sit on the back of a
ferocious bull named Fumanchu and go 2.7 seconds!! But his Life {however brief}
was still meaningful and purpose-filled!! Me? I lived like I was dying, as
well!! I loved deeper, I spoke sweeter, I gave forgiveness I’d been denying!!
Bryan? He lived like he was dying, as well!! How? My lover was finally the
husband that most the time he wasn’t!! Bryan became a friend a friend would
like to have!! Together, we both finally read the Good Book and took a good,
long hard look at what we’d do if we could do it all again!! Because…. Bryan,
Brenda, Shakespeare and I all lived like we were dying…. Yes…. Like tomorrow
was a gift, and you’ve got eternity to think about what you’d do with it…. All
thanks to my precious angel, Shakespeare!! What did you do with it, what can I
do with it, what would I do with it?
Some people only dream
of precious angels, we actually held one in our arms.
At that point, I was no longer fighting, resisting, or blinking back
wet, hot tears, they simply freely flowed from my eyes.
Also during Shakespeare’s memorial service, a record played this
song on the turntable….
‘Who You’d Be Today’
Recorded by Kenny Chesney
Sunny days seem to hurt
the most;
I wear the pain like a heavy coat;
I feel you everywhere I go;
I see your smile, I see your face;
I hear you laughin’ in the rain;
I still can’t believe you’re gone;
It ain’t fair, you died too young;
Like the story that had just begun;
But death tore the pages all away;
God knows how I miss you;
All the hell that I’ve been through;
Just knowin’ no one could take your place;
An’ sometimes I wonder;
Who’d you be today?
Would you see the world? Would you chase your dreams?
Settle down with a family?
I wonder what would you name your babies?
Some days the sky’s so blue;
I feel like I can talk to you;
An’ I know it might sound crazy;
It ain’t fair, you died too young;
Like the story that had just begun;
But death tore the pages all away;
God knows how I miss you;
All the hell that I’ve been through;
Just knowin’ no one could take your place;
An’ sometimes I wonder;
Who you’d be today?
Today, today, today;
Today, today, today;
Sunny days seem to hurt the most;
I wear the pain like a heavy coat;
The only thing that gives me hope;
Is I know I’ll see you again someday;
Someday, someday, someday
Precious angel. That’s what our Beautifully Unique son, Shakespeare,
is!! Even after the emotional roller coaster ride of losing a child, hope,
light and energy can spring forth!! Why? Because God can create an arch of
beautiful colors from a raging storm!! One year after Shakespeare lost his long
battle with classic infantile Tay-Sachs disease? Bryan and I brought into this
world a set of healthy fraternal twins—through in vitro fertilization, plus
pre-genetic implantation diagnosis—they are our rainbow babies!! We named them
Romeo William Shakespeare {sort of after our precious angel}, and Juliet
Rainbow!! These children were definitely ‘handpicked for Earth by their
brother, Shakespeare, in Heaven’!! What is a rainbow baby? He or she {according
to my Google-search}, is an infant who was born after the loss of a child.
Weather-wise, rainbows occur in our skies following uncontrollable, rainy,
windy, hailstone-producing storms. A light after the darkness!! Biblically,
rainbows symbolize God’s promises, hope, grace, and love toward His children!!
Well, they both feel flawlessly befitting!!
Romeo and Juliet are our ‘double rainbow babies’!!
The End.
