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;
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.
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.
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