Thursday, March 1, 2018

"An Angel Named Shakespeare"

Blogging Friends…. Several years ago, during my early twenties, I ‘met’ an incredibly Beautifully Unique, special-needs, medically fragile precious angel named Conner Philip Hopf Online. He was afflicted with a rare, genetic, terminal disorder called classic infantile Tay-Sachs disease. His Mama, Desiree, wrote this Blog-like Website titled ‘Conner’s Way’, where she wrote ‘brutiful’ {brutal + beautiful = ‘brutiful’…. I did not coin that phrase!!} Blog posts about her son’s journey with classic infantile Tay-Sachs disease from the depths of a loving Mother’s heart. Conner was born on my 21st birthday and he earned his angel wings at age twenty-two months on November 26th, 2006. I have never, ever forgotten him. ‘An Angel Named Shakespeare’ was written in Conner’s memory, whose cherubic spirit is definitely all over it!! Peace out, Mary Lou

So, I disappeared…. Again…. I, uh, kind of do that a lot!! This time I disappeared for, well, if you include January, about two months!! Where have I been? Spending one month and two days of my Life writing ‘An Angel Named Shakespeare’…. It was the longest fictional story that I have ever written {I think} I actually had to break it up into Part One and Part Two!! Enjoy…. And have tissues nearby!! You are going to need them!!

‘An Angel Named Shakespeare’ is also my very first successful Bob Dylan-inspired fictional story!!

Edited by Kara Kent!!

“An Angel Named Shakespeare”

Some people seem to fade away but then when they are truly gone, it’s like they didn’t fade away at all. --Bob Dylan

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Just like every other single expectant parents, my husband, Bryan, and I were obviously happily anticipating the arrival of our second-born child!! Shakespeare’s healthy, ‘normal’ {whatever ‘normal’ is} two-year old big sister, Brenda, would repeatedly feel my swiftly-growing abdomen throughout the pregnancy, as he either moved or kicked me!! Bryan and I even possess an unforgettable story about the night when Shakespeare was conceived…. We were enjoying a rare date away from Brenda {who was safely being ‘baby-sat’ by my parents, Leo and Brenda} at Thespian Theater Of Drama. We were enjoying Romeo and Juliet, which is my very favorite story by William Shakespeare. Afterward {on an impulsive whim} we rented a one-night stay at Cheap Motel. It was there in ‘our’ rented bed where we made love with each other and we conceived Shakespeare!!

Hence his special namesake!!

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! From the moment his blood-covered body emerged from mine, we somehow all knew it deep down within our hearts and souls…. Shakespeare was {and is} incredibly special!! It was as if I immediately knew that I’d be touched by an angel!! Why? Because Shakespeare’s inquisitive baby blue-colored eyes immediately revealed an ‘old soul’. But at the same time? Shakespeare’s eyes also had an amazing twinkle {like the nighttime skies} that made me melt inside!! From his first breath, to his first cry, to his first smile, he was {and is} absolutely beautiful!! Shakespeare seemed like such a sweet, happy, loving boy whose smile could light up the room like flickering candles!! He was also amazingly wonderful!! I loved that I had an incredibly calm baby!! Shakespeare was {sans a doubt within my heart and soul} the very best little brother to Brenda!! He loved his ‘cuddle time’ with me and being near her!! I certainly know that I could not have asked for a better son!!

Shakespeare seemed like the picture of health, so strong, so handsome, so beautiful….

Bryan….” I slowly said one Saturday morning after Shakespeare turned six months old, “I am almost afraid to say this, but…. I think there might be something wrong with Shakespeare….”

Why?” asked Bryan, “What makes you think that?”

“Because….” I slowly said, as I cuddled with Shakespeare, “He is no longer achieving the normal six month old baby milestones…. By this age, Brenda was beginning to sit up on her own…. Remember….? By this age, Brenda was rolling over from her back to her stomach and vice versa…. Shakespeare is no longer accomplishing those milestones….”

“Well, every single baby develops and learns at his or her own pace, Desiree,” encouraged Bryan, “Some children are so intelligent that they’re practically brilliant geniuses, others are a little bit slower…. And what is ‘normal’, anyway? It’s just a word that people overuse!! Which is one reason why being different, learning disabled, weird, {or having special-needs} is still looked down upon in society today. Well, in my opinion, anyway. You know…. People even overuse the word ‘normal’ to validate in his or her grieving heart, soul and mind that their child is ‘typical’…. Now…. I am sure that Shakespeare is absolutely fine!! He’s probably simply strong-willed and stubborn like his Mama!! That, or Shakespeare is reaching milestones in his own sweet time…. Slower than Brenda did at this age!! Boys tend to develop slower than girls!! Am I right?”

“Haven’t you noticed that something is wrong with Shakespeare….?” I said.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! But there was something wrong with my baby. I could feel it. To prove my point valid, I lay Shakespeare down on his back and I anxiously waited for him to roll over, like he once did. Absolutely nothing happened. Shakespeare just lie there, as his baby blue eyes looked up at me and bore into my soul. I sat him on his butt. I momentarily let go. Unlike seemingly just a short time ago before today, Shakespeare fell flat upon his back and into my protective arms. I could literally feel them…. My Motherly anxieties, thoughts, feelings and emotions overcame me. Shakespeare let out a cry. He loved more than anything to be cuddled. I blinked back wet, hot tears of my own.

I picked Shakespeare up and I cuddled with him.

“Bryan….” I pressed, “Can you not see that there is something wrong with Shakespeare….?”

Yes….” said Bryan, “I can see it. I am not blind, Desiree!! But I wouldn’t say that there is something ‘wrong’ with Shakespeare…. He’s just different!! Because even if Shakespeare is diagnosed with cerebral palsy—as challenging as that would be for us—we will still ‘keep on keepin’ on like a bird that flew’, {to quote Bob Dylan from ‘Tangled Up In Blue’}, but regardless of a….”

Bryan momentarily paused, as though he was emotionally coming to terms with his son possibly having cerebral palsy.

“….Potential C.P. diagnosis, there is still absolutely nothing wrong with Shakespeare!!” Bryan finished.

“I do not know, Bryan….” I said, as I cuddled with Shakespeare, “To quote Han Solo from Star Wars…. ‘I’ve got a bad feeling about this’…. I think that I’ll make an appointment for Shakespeare to see our pediatrician, Dr. Hopf…. You know…. Just in case….”

“Alright, do it if making an appointment with Dr. Hopf will ease your anxieties,” Bryan lovingly said, “But, Desiree, I think that you’re overreacting and chasing shadows!! You would not be making an appointment with Dr. Hopf if it were Brenda!! Am I right?”

“Yes, making an appointment with Dr. Hopf will help me feel better….” I insisted.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Because deep down within my heart and soul, it did not feel like I was ‘overreacting’ or ‘chasing shadows’ about him no longer achieving his ‘normal’ {whatever ‘normal’ is} six month old milestones. Call it being a hypochondriac about Shakespeare’s health, wellbeing and development. Call it insanity. Call it ‘Mother’s Instinct’. Call it whatever you want. I did not care!! Because there was something wrong {or different} about Shakespeare, and I would soon find out what that was. Because I did make an appointment for my son to be examined by Dr. Hopf at Compassion & Empathy Pediatrics. Which, I attended alone, sans Bryan. Because he had driven to work. Brenda was being safely ‘baby-sat’ by Bryan’s parents, Harold and Lillian. But—unlike what I had hoped for—my appointment today with Dr. Hopf did not make me feel better about Shakespeare…. Quite the contrary happened. Today’s appointment with Dr. Hopf only made me feel worse.

For this would be the longest—and loneliest—day of my entire Life.

“Shakespeare was even attempting to crawl, but he no longer does that….” I nervously and anxiously informed Dr. Hopf, “What is wrong with him….?”

Hmmm….” said Dr. Hopf, who is wise, born to do what she does, and nearly always has the answers, “You also said that Shakespeare is no longer sitting up anymore, as well? And he’s not rolling over from his back to his stomach, either?”

No….” I said, as I protectively held my son up on the examination table so that he would not fall over, “Shakespeare was beginning to achieve those ‘normal’ {whatever ‘normal’ is} six month old milestones—just like his big sister, Brenda—but suddenly he stopped…. Why do you suppose that is….?”

“Does your family—on either side—possess a history of genetic disorders such as Sandhoff disease, Gangliosidosis-1 or Canavan disease, for instance?” inquired Dr. Hopf.

No….” I said, “Well…. Not that I know of, anyway…. Why do you ask….?”

Hmmm….” said Dr. Hopf, “I am not sure. That is why I’m going to order up a diagnostic blood test for Shakespeare.”

What….?” I anxiously said, as I cuddled with Shakespeare, “A diagnostic blood test….? So I was right…. There is something wrong with Shakespeare….?

“I do not know that for certain,” Dr. Hopf confidently assured me, “And I won’t until we perform Shakespeare’s diagnostic blood test.”

“Alright….” I said, as I cuddled with Shakespeare, “Can we have that performed today….? Because—as you already know—I am also a very busy Mama to my energetic two-year old daughter, Brenda….!! Can we just get Shakespeare’s diagnostic blood test done and out of the way so I will not constantly worry about it until our next appointment….?”

“Yes….” answered Dr. Hopf, “We certainly can.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! So order up and perform a diagnostic blood test, Dr. Hopf did. I helplessly cuddled with poor Shakespeare in my arms as he screamed his vocal chords out. This test will check the levels of an enzyme called hexosaminidase-A in his blood, I was told by Nurse Dracula. As a talented multi-tasker, I pulled out my cell-phone and I Google-searched these twain foreign words that I’d never, ever heard. Apparently, the levels of hexosaminidase-A are low or absent in classic infantile Tay-Sachs disease. But, with a screaming Shakespeare sitting on my lap, I did not have time to Google-search that genetic disorder. Well, ignorance is bliss…. What I did not know couldn’t hurt me. Shakespeare’s diagnostic blood test sample would be analyzed in the laboratory room.

I felt as though my living breathing son was suddenly a medical science experiment, an unsolved mystery.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Heedless to contrary opinion, I didn’t consider him ‘a miracle’…. Not any more than Brenda—our healthy daughter—was at the time of her birth!! For every baby—in my opinion—is a miracle!! Birth defects, Life-saving surgical procedures, or perfect bills of health makes absolutely no difference none whatsoever in my heart, soul and mind!! Why? Because a pregnancy can miscarry and a baby can be stillborn. But this was bad. I could feel it. This was really bad. To quote Cory Matthews from Boy Meets World…. ‘Nothing good can come from this’. Dr. Hopf knew far more about what was wrong with Shakespeare than she had been willing to tell me. I could see it in her face, I could hear it in her voice. Because, after all, Dr. Hopf has been our pediatrician for twain years and I am gifted at reading people.

I blinked back wet, hot tears.

“Will I be able to find out what the results are of Shakespeare’s diagnostic blood test today….?” I nervously asked Nurse Dracula after my son had finally calmed down.

“No, that is not possible,” answered Nurse Dracula, “It obviously takes time to analyze blood test samples.”

“Like how long….?” I anxiously asked.

“We will call you when Shakespeare’s diagnostic blood test results come in,” promised Nurse Dracula.

Then he smiled warmly at my son and gave me a long embrace.

“It was wonderful to meet your special baby,” said Nurse Dracula, “Dr. Hopf will return in a minute.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! I have never in my entire Life been embraced by a nurse before. That felt weird. Do not get me wrong, it was kind, considerate and nice. Nurse Dracula seemed to possess the compassion that everybody with his calling should have. But, still, it felt weird. Did everybody but me know the culprit about what was wrong with Shakespeare? He only had cerebral palsy, right? Because Bryan was absolutely right. As challenging as that diagnosis would be for our little family, we could certainly ‘keep on keepin’ on like a bird that flew’ if Shakespeare had cerebral palsy. I blinked back wet, hot tears. There I was, temporarily left completely alone with just Shakespeare and my complex, jumbled up, confused emotions.

Suddenly, Dr. Hopf walked into our room.

“Hi….” said Dr. Hopf, “I hope that Shakespeare’s diagnostic blood test was not too painful of an experience for the little man. But I could hear him screaming from down the hall.”

Dr. Hopf paused for a nanosecond.

“I hope you do not mind,” said Dr. Hopf, “But I took the liberty of calling and making an appointment with Dr. Wivell {he is a pediatric ophthalmologist} so that he can examine Shakespeare’s eyes. Since I know that you like every single appointment scheduled today, Dr. Wivell has an opening for Shakespeare at 12:00 PM. Then, you will see me again immediately following.”

Why….?” I anxiously asked, as I cradled my sleeping son, “What is wrong with Shakespeare’s eyes….?”

“I repeat, I am not sure,” answered Dr. Hopf, “But we are going to find out.”

Dr. Hopf paused for a nanosecond.

“I also took the liberty of calling and making an appointment with Dr. Manning {she is a pediatric clinical geneticist}, so that we can work on solving the mystery of what is going on with Shakespeare,” said Dr. Hopf, “Since I know that you like every single appointment scheduled today, Dr. Manning has an opening for Shakespeare at 2:00 PM. Then, you will see me again immediately following.”

“A pediatric clinical geneticist….?” I anxiously asked, as I rocked my sleeping son, “Why….? What is wrong with Shakespeare’s genes….?”

“I am not sure,” answered Dr. Hopf, “But we are going to find out.”

Dr. Hopf paused for a nanosecond once more.

“I also took the liberty of calling and making an appointment with Dr. Damon {who is a pediatric neurologist}, so that he can examine Shakespeare’s nervous system,” said Dr. Hopf, “Since I know that you like every single appointment scheduled today, Dr. Damon has an opening for Shakespeare at 4:00 PM. Then, you will see me again immediately following.”

Why….?” I anxiously asked, as I kissed my sleeping son on his soft, round forehead, “What is wrong with Shakespeare’s nervous system….?”

“I said this several times already and I’m going to say it again, I am not sure,” Dr. Hopf patiently answered, “But we will find out. Never underestimate the power of Mama Bear. Because I told these doctors about Shakespeare’s circumstances and about your story. Each one of them were emotionally moved by it.

“Dr. Hopf….” I said, as I cuddled with Shakespeare, “You have been our pediatrician for twain years…. And, I am frightened to ask, but…. What are you holding back from me about Shakespeare….?”

“I am not certain,” begin Dr. Hopf, “But we should know more about what is causing Shakespeare’s ‘symptoms’ after the results of his diagnostic blood test come in. Dr. Wivell, Dr. Damon and Dr. Manning will also provide some answers to your questions.”

What…. Are…. You…. Holding…. Back…. From…. Me….?” I said, with anxiety and frustration in my voice, as Shakespeare speechlessly popped open his baby blue eyes.

“I will be breaking rules and regulations by telling you this,” said Dr. Hopf, “I think…. But I am not sure…. I think that Shakespeare might….”

Dr. Hopf paused for a nanosecond.

“I think that Shakespeare might…. Might have classic infantile Tay-Sachs disease,” she continued, “As a pediatrician, I have met—and cared for—other angel babies just like Shakespeare.”

Classic infantile Tay-Sachs disease….?” I anxiously said, as I cuddled with with Shakespeare, “I am frightened to ask this, but…. What is classic infantile Tay-Sachs disease….?”

Sit down, Desiree,” said Dr. Hopf, “This will….”

Dr. Hopf momentarily paused.

“….take a while….” Dr. Hopf finished.

And sit down I did, as I cuddled with Shakespeare.

Remember, this is only a suspicion, speculation and assumption….” Dr. Hopf softly said.

To which I speechlessly nodded my head ‘yes’.

Tay Sachs disease is a rare—there are fewer than 20,000 U.S. cases per year—genetic disorder caused by the absence of beta-hexosaminidase-A,” explained Dr. Hopf, “That’s why Nurse Dracula performed Shakespeare’s diagnostic blood test. This missing enzymebeta-hexosaminidase-A—causes cells to become damaged, resulting in progressive neurological disorders. A baby who is born with classic infantile Tay-Sachs disease appears normal at birth and typically continue to develop normally for the first six months of age. Around six months of age, development slows. Parents may notice a reduction in vision and tracking and the baby does not outgrow his or her normal startle response. Children who are afflicted with classic infantile Tay-Sachs disease gradually regress, losing skills one by one. Over time they are unable to crawl, turn over, sit or reach out. Other symptoms include loss of coordination, progressive inability to swallow and difficulty breathing. By the age of two and beyond, most children who were born with classic infantile Tay-Sachs disease experience recurrent seizures by age two and eventually lose muscle function, mental function and sight, becoming mostly non-responsive to their environment.”

Dr. Hopf paused for a nanosecond.

“I know that this information is…. A lot…. For your mind to process all at once,” Dr. Hopf gently said.

“If classic infantile Tay-Sachs disease is a genetic disorder….” I said, as wet, hot tears filled my eyes, while I cuddled with Shakespeare, “Then who, exactly, did he inherit it from….?”

Anybody can be a carrier of classic infantile Tay-Sachs disease,” explained Dr. Hopf, “When both parents are carriers, each child has a twenty-five percent chance of having the disorder. The carrier rate for the general population is one out of two-hundred and fifty. Some evidence suggests people of Irish/British Isle descent have an increased risk over the general population between one out of fifty to one out of one-hundred and fifty. French Canadians, Louisiana Cajuns and Ashkenazi Jews are all considered high risk with a carrier rate of one out of twenty-seven.”

“You mean that I caused him to be afflicted with classic infantile Tay-Sachs disease….?” I said, as wet, hot tears streamed down my face while I cuddled with Shakespeare, “I created his ‘developmental delays’ and future suffering….? I did that….? What kind of a loving, nurturing, protective Mama am I….?”

Bryan caused Shakespeare’s classic infantile Tay-Sachs disease, as well,” said Dr. Hopf, in an unsuccessful effort to comfort me, “For he is also most likely a carrier.”

“But how can this be possible….?” I asked, as my wet, hot tears dripped onto Shakespeare’s soft, round head, “Neither Bryan or I are people of Irish/British Isle descent, and we’re not French Canadians, Louisiana Cajuns and Ashkenazi Jews, either….”

“I do not have an answer to that question,” said Dr. Hopf.

“But we don’t even possess a family history of classic infantile Tay-Sachs disease….” I said, as brushed wet, hot tears from my eyes and I cuddled with Shakespeare, “I have never—until today—even heard of this disorder…. Why is that….?”

One of the most insidious features of classic infantile Tay-Sachs disease is it often strikes families with no prior history of the disorder,” explained Dr. Hopf, “Large and diverse family trees allow the carriers of classic infantile Tay-Sachs disease to go without expression for generations until unexpectedly a child is diagnosed and the family submits to carrier testing.”

“Why…. And I am obviously grateful beyond grateful that she is not afflicted with classic infantile Tay-Sachs disease…. But why…. Doesn’t Brenda also have this disorder….?” I asked, as I blinked back wet, hot tears while I cuddled with Shakespeare, “Because, after all {like Shakespeare} she’s mine and Bryan’s child as well….”

“Brenda is most likely a carrier of classic infantile Tay-Sachs disease,” said Dr. Hopf, “Just like you and Bryan are. A simple blood test can be performed on Brenda {when you are ready} to see for certain if she is a carrier. But I will not force this on either you or Brenda. She is, after all, only two years old…. Brenda will obviously not be conceiving children any time soon!! If a baby has classic infantile Tay-Sachs disease, older siblings are not at risk to develop Juvenile or Late Onset Tay-Sachs disease {two other forms of this disorder} later in Life.”

“Well, at least that is positive news amongst all of this negative information….!!” I said, as I cuddled with Shakespeare and I smiled weakly through my wet, hot tears, “I could not imagine having more than one child who is afflicted with classic infantile Tay-Sachs disease…. I count my lucky stars that Brenda is healthy….!!”

Babies who are affected by classic infantile Tay-Sachs disease are frequently diagnosed by the cherry-red spot on the retina of the eyes,” explained Dr. Hopf, “That is why Shakespeare needs an appointment with Dr. Wivell, our pediatric ophthalmologist. Often, at about ten to fourteen months of age, children may start to exhibit trouble tracking and/or focusing with their eyes, so parents schedule an appointment for an eye exam. The cherry-red spot is quickly seen and an initial diagnosis of classic infantile Tay-Sachs disease.”

Ten to fourteen months old….?!” I said, as wet, hot tears blinded my own vision, while I cuddled with Shakespeare, “I cannot wait that long…. It would be four to eight months of wondering, of fretting, of suspense….”

“Now, I am not equipped or trained to give Shakespeare an accurate and successful diagnosis of classic infantile Tay-Sachs disease,” said Dr. Hopf, “I have never given any of my other angel baby patients’ parents the news. Diagnosis can also be made by Dr. Damon {our pediatric neurologist} and the completion of a metabolic evaluation.”

Dr. Hopf momentarily paused.

“A follow-up D.N.A. test may also be recommended for Shakespeare,” said Dr. Hopf, “So I am going to eventually schedule that.”

Why….?” I anxiously asked, “What is wrong with Shakespeare’s D.N.A.? Why does he need to have that tested….?”

“I am not sure,” answered Dr. Hopf, “But we are going to find out.”

“Can we have Shakespeare’s D.N.A. test scheduled…. For today….?” I anxiously pressed, as blinked back wet, hot tears, while I cuddled with a wide-awake Shakespeare, “What are you waiting for…. Shakespeare’s first Christmas….?”

“I will see what I can do, Mama Bear,” said Dr. Hopf, with a smile written on her face, “But Shakespeare’s D.N.A. test is a follow-up appointment. Which means that you will need to return here on another scheduled day.”

Dr. Hopf walked on, but then she immediately turned back around.

“I am not going to beat around the bush with you, Desiree….” said Dr. Hopf, as she blinked back wet, hot tears, “Because you’ll find out sooner or later, anyway…. If…. If Shakespeare does, in fact, have classic infantile Tay-Sachs disease…. And I obviously hope from the depths of my heart that I’m wrong…. Shakespeare will not live to see his fifth birthday….”

“What are you saying….?” I said, as I held Shakespeare tight, and uncontrollable wet, hot tears fell down my face like a hard rainfall, “That…. That…. That Shakespeare is…. Dying….?”

“If…. If Shakespeare has classic infantile Tay-Sachs disease….” Dr. Hopf slowly continued, as wet, hot tears streamed down her face, “Yes…. I am saying that Shakespeare is dying…. But exactly how long he has on this Earth will be unpredictable…. I have seen angel babies die at age two…. My youngest patient thus far was merely eighteen months old….”

“Oh…. My…. Gosh….” I said, as let my wet, hot tears freely flow, while I cuddled with Shakespeare.

“There is no treatment or cure for classic infantile Tay-Sachs disease but there are ways to manage symptoms,” explained Dr. Hopf, as she temporarily regained her composure, “These range from life-extending interventions like a feeding tube to comfort measures like massage to promote relaxation. Respiratory health and seizure management are the two main symptom management challenges in classic infantile Tay-Sachs disease.”

“Well….!!” I said in a moody, irritable, agitated, edgy fashion, as wet, hot tears freely fell from my eyes, while I cuddled with Shakespeare, “Aren’t you just ‘Dr. Sweetness And Light’….!!”

“I am so sorry….” said Dr. Hopf, as she blinked back wet, hot tears and exited our room, “I’m also going to take the liberty of ordering up Shakespeare’s completion of a metabolic evaluation.”

“Can…. Can you have Shakespeare’s metabolic evaluation happen…. Today….?” I anxiously asked, as wet, hot tears continued to fall while I cuddled with Shakespeare.

“I’ll see what I can do,” said Dr. Hopf, “However…. I cannot promise that Shakespeare will have his completion of a metabolic evaluation today.”

Try anyway….” I anxiously pressed, as my seemingly never-ending wet, hot tears flowed while I cuddled with Shakespeare.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! To an onlooker, I was yet another overprotective, anxious, pushy ‘helicopter Mom’. It appeared that, {strangely} I wanted to know what was wrong with Shakespeare…. Obviously sooner, rather than later. But, truth be told, I did not want to know what was wrong with Shakespeare. I needed a healthy, thriving, ‘normal’ {whatever ‘normal’ is} son. I mean, what Mama in her own right mind would want to know what is wrong with her baby? Yet, on the other hand? Deep down within my heart and soul, I had already sensed that there was something wrong with Shakespeare. I did not know what at the moment, exactly…. But instinctively, I knew. So those onlookers would not be entirely mistaken. Yes, I wanted to know what was wrong with Shakespeare…. Yet I did not. It was complicated, just like my thoughts, feelings and emotions.

I did not need mental denial of Shakespeare’s terminal disease, I needed emotional closure so that I could deal with it.

Dr. Hopf left our room for a nanosecond and then she returned.

“You are scheduled to have Shakespeare’s completion of a metabolic evaluation performed immediately following his appointment with Dr. Damon,” said Dr. Hopf, “Then you’ll see me again.”

To which I suddenly felt simultaneously frightened and relieved.

“Oh, thank-you, thank-you, thank-you, thank-you, thank-you….!!” I said, as wet, hot tears fell from my eyes, while I cuddled with Shakespeare.

“But, remember, we still won’t know for certain if Shakespeare has classic infantile Tay-Sachs disease until his diagnostic blood test results come in,” said Dr. Hopf.

“When will that be….?” I anxiously asked, as wet, hot tears flowed down my face, while I rocked a crying and now-hangry Shakespeare.

“I do not know,” answered Dr. Hopf, “When Shakespeare’s diagnostic blood test results do come in, that will obviously serve as the last piece of this classic infantile Tay-Sachs disease puzzle. I wish I could tell you more to ease your anxieties.”

Then Dr. Hopf returned Shakespeare and I to their waiting room.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! While waiting for his appointment with Dr. Wivell, I nursed my baby. For, after all, it had been a long day and he was fussy. Suddenly, my cell-phone rang. I was still feeling on edge…. As resulted, I jumped and I screamed!! Lucy the receptionist who was sitting at her desk looked at me. She did not seem concerned…. Lucy the receptionist simply smiled at me and a contentedly nursing Shakespeare. For no apparent reason? I shot Lucy ‘the stink eye’ in return. I looked at my cell-phone to see who was calling…. Bryan. Not now…. I couldn’t find it within me to tell my husband that I thought Shakespeare was afflicted with classic infantile Tay-Sachs disease…. And that our son would probably never turn five years old. I was still emotionally processing this potential cruel Reality, this cold, hard truth. I silenced its ringtone. Wet, hot tears welled up in my bloodshot eyes.

The only thing I knew how to do; Was to keep on keepin’ on like a bird that flew’….

Shakespeare and Desiree?” called out Nurse Sherri from the doctor’s office doorway.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! I stood up {while holding Shakespeare close to my anxious pounding heart} and, as I fought back wet, hot tears, I nervously walked toward Nurse Sherri. Would Dr. Wivell see something that I could not? Did Shakespeare have a ‘cherry-red spot’ on the retina of his eye? There was obviously something wrong—not ‘different’, as Bryan tried to tell me—with my son…. Did he have classic infantile Tay-Sachs disease? Would Dr. Wivell be able to confirm this dreaded diagnosis…. Even without the results of Shakespeare’s diagnostic blood test or his metabolic evaluation? I almost did want him to have cerebral palsy…. Individuals who were born with that disorder can live as long as thirty or eighty years…. Not merely four.

I actually know a sweet older woman—named Erica—who has cerebral palsy and she’s done great things with her Life!!

“Alright, now let’s take a good look at the retina of Shakespeare’s eyes,” said Dr. Wivell, once we were in our room after Nurse Sherri left, “They are beautiful baby blues!!”

“Thank-you….” I anxiously said, as I fought back wet, hot tears, while holding Shakespeare close, “I am certainly in love with my baby’s blue eyes….”

“And I can completely understand why you are,” said Dr. Wivell, as he looked closely into Shakespeare’s retina with telescope-like headgear while Shakespeare sat on my lap, “Ah, yes…. There it is…. A cherry-red spot.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! My heart simultaneously sank like the Titanic and shattered like a fallen broken glass at Dr. Wivell’s discovery. I blinked back wet, hot tears. Dr. Hopf’s words from earlier today virtually screamed in my ears like an ambulance’s siren. Babies who are affected by classic infantile Tay-Sachs disease are frequently diagnosed by the cherry-red spot on the retina of the eyes. This was it…. Shakespeare had classic infantile Tay-Sachs disease. I did not even need to know the results of his diagnostic blood test or metabolic evaluation after all. Because Shakespeare had classic infantile Tay-Sachs disease. Why did he even need a follow-up D.N.A. test appointment? Shakespeare had classic infantile Tay-Sachs disease. Why did he even have an appointment with Dr. Damon? What was the point of seeing a pediatric neurologist, anyway?

Shakespeare had classic infantile Tay-Sachs disease.

“Can I hold him….?” asked Dr. Wivell, as he blinked back wet, hot tears, “I like to cuddle with these angel babies every chance that I get…. Can I hold Shakespeare….?”

Yes….” I said, as wet, hot tears flowed down my face and I handed Shakespeare to Dr. Wivell.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Dr. Wivell gazed lovingly at my child, spoke sweetly to him and smiled. Other than Shakespeare, there was also not a dry eye in our room, as we both wept wet, hot tears. Complex thoughts, feelings and emotions conquered me. Shakespeare was afflicted with classic infantile Tay-Sachs disease. Suddenly, his entire Life flashed before my very eyes…. Also known as The Heartbreaking Reality Of What-Will-Not-Happen. Like Shakespeare’s first steps…. Or participating in sports…. Like Shakespeare’s first words…. Or learning how to drive…. Like Shakespeare’s prom night…. Or Bryan, Brenda and I celebrating, as he graduates from High School…. Like acing his S.A.T.’s should he have decided to attend college…. Or falling in love and getting married…. Like embracing his own beautiful children….

Suddenly, every single hope and dream that I ever had for Shakespeare disappeared.

God bless your angel baby….” said Dr. Wivell, as he gave Shakespeare back and showed me to the door.

“Do we still need to see Dr. Damon….?” I asked Lucy the receptionist, as I blinked back wet, hot tears while cuddling with my son, “Even though Shakespeare is….”

I swallowed that cosmic-sized pill hard and I chocked back wet, hot tears.

“….Even though Shakespeare is…. Is afflicted with…. With classic infantile Tay-Sachs disease….?” I finished, through my wet, hot tears.

Yes, you do,” said Lucy the receptionist, as she looked over Shakespeare’s busy schedule, “At 4:00 PM. Have a seat.”

But first, Shakespeare was scheduled to see Dr. Manning {their pediatric geneticist} at 2:00 PM.

Shakespeare and Desiree?” called out Nurse Carla from the doctor’s office doorway.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! I knew all along that something was wrong with my baby’s ‘normal’ {whatever ‘normal’ is} development. I could simply feel it. Maybe Shakespeare had intellectual disabilities? Or perhaps my firstborn son would have developmental delays? Maybe Shakespeare had learning disabilities? Or perhaps Bryan’s assumption was correct…. Maybe Shakespeare did, in fact, have cerebral palsy? Would he be medically fragile? I certainly hoped not!! I obviously knew that my son had special-needs. But there could not possibly be something wrong with Shakespeare’s genes…. Because there is absolutely nothing wrong with my genes or Bryan’s genes!! Not that I know of, anyway…. Bryan and I possess good, strong, healthy genes.

Or so I thought.

“Alright, let’s study Shakespeare’s genes,” said Dr. Manning, as she inspected my son, “Ah, he is such a sweet-natured, compliant boy!!”

“Will we learn something…. Good or bad…. About Shakespeare’s genes….?” I anxiously asked, as I blinked back wet, hot tears, while I cuddled with my son.

“We will not today,” answered Dr. Manning, “Because my highly trained team of geneticists—also known as my ‘lab rats’—need to look at Shakespeare’s genes through their microscopes like Bruce Banner did in The Avengers.”

“When will we find anything out….?” I anxiously asked, as I blinked back wet, hot tears, while I cuddled with my son.

“We’ll call you when Shakespeare’s genetics results come in,” promised Dr. Manning.

“I have a question….” I boldly, bravely and courageously said, as I blinked back wet, hot tears, “Is Shakespeare afflicted with…. With classic infantile Tay-Sachs disease….?”

“I do not know for certain….” answered Dr. Manning, as her eyes filled with wet, hot tears, “But it looks like Shakespeare possibly has…. Classic infantile Tay-Sachs disease…. That is all I am at liberty to say at the moment. I’m sorry. Babies who were born with classic infantile Tay-Sachs disease are known as angels, magnets to God. Have you heard that? Shakespeare was sent from Heaven. He will carry out a divine purpose. Why, Shakespeare even possesses the Heavenly glow that angels have…. And just look at his sweet cherubic face!! Shakespeare will be an angel baby on a very important mission. Why? Because, in the short time that God allows Shakespeare to stay here on Earth? However long that may be? God will make absolute certain that Shakespeare brings joy, peace, love and happiness to everybody who he meets {especially you, Desiree}, in order for Shakespeare to deliver his message and do his job as an angel baby.”

“But I want a healthy, thriving, ‘normal’ {whatever ‘normal’ is}, typically developing son….!!” I protested, as wet, hot tears rained down from my eyes while I cuddled with Shakespeare, “I do not want an angel….!! Don’t you understand, Dr. Manning….? I did not ask for Shakespeare to be born and afflicted with classic infantile Tay-Sachs disease….!! I never said that I wanted an angel….!!”

“But as a Mother myself, I do understand—for the most part—your very raw, sincere, valid thoughts, feelings and emotions….” said Dr. Manning, as she blinked back wet, hot tears, “I obviously wouldn’t want any of my three sons to be born with classic infantile Tay-Sachs disease or some other genetic disorder….”

“I did not sign up for this….!!” I snapped, as unstoppable, wet, hot tears ran down my face while I cuddled with Shakespeare, “Having an ‘angel baby’…. Being a part of the ‘rare disease club’…. Having an incredibly medically fragile child…. Outliving my own son…. Being one of ‘those people’ who raise a special-needs child….”

“Do you want Shakespeare?” Dr. Manning pointblank asked.

What on earth is that supposed to mean….?!” I snapped in a defensive, moody, irritable, agitated, edgy fashion, while wet, hot tears streamed down my face as I cuddled with Shakespeare, who suddenly popped open his sleepy eyes.

“You heard me,” Dr. Manning firmly, yet patiently said, “Now, answer my question, Desiree.”

“Of course I want Shakespeare….!!” I said, as wet, hot tears fell from my face, “He is my son….!! I love him….!!”

“Do you want all of Shakespeare, every single part of him?” Dr. Manning pointblank said.

“What is that supposed to mean….?!” I snapped, as wet, hot tears streamed down my face and I kissed Shakespeare on his soft, round forehead.

“Well, if…. If Shakespeare has…. Classic infantile Tay-Sachs disease,” said Dr. Manning, as her eyes filled with wet, hot tears, “Then that means it’s in his genes…. Classic infantile Tay-Sachs disease…. Is a cosmic part of him…. It’s in his D.N.A…..”

Dr. Manning paused for a nanosecond.

“As soon as you accept Shakespeare’s potential classic infantile Tay-Sachs disease?” Dr. Manning softly said, “Then {and only then} will you be able to completely want him.”

Why is Life so damn hard….?” I said, as wet, hot tears ran down my face, while I cuddled with Shakespeare, “I do not want to watch my son physically suffer…. And eventually…. Die….!!”

“I understand that is is—and, quite possibly will be—hard, Desiree….” said Dr. Manning, as she wiped away wet, hot tears from her eyes, “But if you have not accepted Shakespeare’s potential classic infantile Tay-Sachs disease, then you’ll never completely want your angel baby…. You’ll never completely want your son.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! As I sat—once more—waiting for yet another doctor {this time, a pediatric neurologist} to examine my baby, Shakespeare was feeling hangry again. As resulted, he cried and fussed. I pulled out a pouch of God’s Nature Organic apple/strawberry/banana/yogurt baby food from Shakespeare’s diaper bag. I gently squeezed its contents into his mouth. As I waited, thoughts, feelings and emotions of utter confusion conquered me. Dr. Hopf said that precious angels like Shakespeare are frequently diagnosed with classic infantile Tay-Sachs disease by the cherry-red spot on his or her eyes’ retina…. Was I right? I did not—as my head spun like the rotator blades of a helicopter—mishear Dr. Hopf!! Besides, I completely trust her judgment…. Dr. Hopf definitely knows what she is doing!! Could we not just go home? Because there, I’d anxiously await the results of Shakespeare’s diagnostic blood test and genetics testing to come in. Would nobody answer this Mama’s seemingly endless questions? I held Shakespeare close to the beating of my heart.

Wet, hot tears fell.

Shakespeare and Desiree?” called out Nurse Lisa from the doorway.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! If I already knew that my baby was afflicted with classic infantile Tay-Sachs disease {even without the results of his diagnostic blood test or metabolic evaluation}, then what was Dr. Damon going to discover? Would he find something else wrong with Shakespeare? Like a seizure disorder such as febrile convulsions in the future? Would Shakespeare suffer from epilepsy some day? Or worse…. Would Dr. Damon detect a frightening brain tumor in Shakespeare’s little head? Aside from being afflicted with classic infantile Tay-Sachs disease…. Did Shakespeare also have muscular dystrophy? Or would he be diagnosed with cerebral palsy, after all? Did Shakespeare suffer from some type of nerve/muscle disorder? I could not handle any more bad news that day!!

Yes, I was ‘spiraling’ from one worry, thought, feeling and emotion to another before Dr. Damon even examined my son!!

“Well, hi there, Shakespeare,” said Dr. Damon after Nurse Lisa left, “I absolutely love his unique name, by the way!!”

Thank-you….” I said, as I fought back wet, hot tears, while I cuddled with my son.

“Now, let’s examine Shakespeare,” said Dr. Damon.

I began explaining to him my son’s obvious current condition…. But Dr. Damon stopped me.

“Save your breath, Mama Bear,” said Dr. Damon, “You do not need to tell me anything. I have Shakespeare’s symptoms on my chart right here. Dr. Hopf sent me his latest medical record. Alright, now let’s see what I am dealing with here…. Show me what you can—and cannot—do, Shakespeare.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Dr. Damon gently took him from my arms. With his hands protectively supporting Shakespeare’s floppy body, he put my son in a sitting position on the examination table. Dr. Damon temporarily let go. Just like he did earlier today, Shakespeare fell flat upon his back and into Dr. Damon’s muscular arms. Wet, hot tears filled my eyes. Dr. Damon gently lay Shakespeare on his back and waited for him to roll over to his stomach. Absolutely nothing happened. My heart broke. Dr. Damon gently lay Shakespeare on his abdomen and waited for him to roll over to his back. Absolutely nothing happened. I blinked back wet, hot tears. Dr. Damon tapped a reflex hammer against Shakespeare’s chubby knees and elbows. My son did not bend either joint. Instead, Shakespeare merely jumped and cried. I never felt so helpless in my entire Life. Dr. Damon then lifted Shakespeare up in the air—like ‘Superbaby’—with one hand on his chest and the other on his back. As resulted, my son’s body flopped down as though he were already dead. I gasped.

Finally, Dr. Damon spoke the words that I simultaneously already knew and did not want to hear….

“I am one-hundred percent certain that Shakespeare has…. Classic infantile Tay-Sachs disease….” said Dr. Damon, as wet, hot tears filled his eyes, “Did he have a diagnostic blood test….?”

I speechlessly nodded ‘yes’ as my own wet, hot tears freely fell.

“Well, we will not know for absolute certainty that Shakespeare has classic infantile Tay-Sachs disease—”

“Until his diagnostic blood test results come in….” I said, as I wiped away my wet, hot tears, “I know…. I have been told….”

Then Dr. Damon kissed Shakespeare on his chubby, cherubic cheeks and soft, round head before gently handing him back to me.

Whenever I’m in the presence of an angel baby….” explained Dr. Damon, as he blinked back wet, hot tears, “I always kiss him or her….”

To which I smiled weakly through my own wet, hot tears.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! As I sat in the doctor’s office waiting room once again, unpleasant thoughts, feelings and emotions ran through my crazy never-shuts-down head as though they were competing in some marathon. Because I ‘went there’…. For the first time since Dr. Hopf educated me on classic infantile Tay-Sachs disease? I allowed myself to think about Shakespeare’s mortality. I contemplated mine, Bryan’s and Brenda’s heartbreaking loss in the future. I also envisioned Shakespeare’s brief Life. For the first time since Dr. Hopf basically said that Shakespeare is afflicted with classic infantile Tay-Sachs disease? I allowed myself to imagine my own unbearable grief. For the first time since hearing Dr. Manning’s wise words? I wholeheartedly wanted every single part of Shakespeare….

Which meant that, yes, I was beginning my long journey of accepting his classic infantile Tay-Sachs disease.

Shakespeare and Desiree?” called out Nurse LeAnn from the doorway.

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! What would Nurse LeAnn discover about my baby as she performed his completion of a metabolic evaluation? I already knew that Shakespeare was afflicted with classic infantile Tay-Sachs disease. I obviously did not need somebody else to prove this genetic disorder as truth by performing any more tests. Shakespeare had already virtually been diagnosed with classic infantile Tay-Sachs disease. What would Nurse LeAnn discover about my son that I did not previously know? According to a quick Google-search, babies who are born and afflicted with classic infantile Tay-Sachs disease eventually, over time, become ‘mentally retarded’…. I knew what that meant. Translation…. These precious angels will eventually, over time, develop intellectual disability. ‘Retarded’ is neither a part of my vocabulary, nor do I even see it in special-needs people.

Would Shakespeare’s completion of a metabolic evaluation confirm that he’d have intellectual disability someday?

Awwww, it feels as though I am truly in the presence of an angel,” said Nurse LeAnn, as Shakespeare flashed his cherubic, dimple-faced smile, “And, perhaps I am.”

“Yes, you are….” I said, as I blinked back wet, hot tears, while I cuddled with my son, “Can I find out the results of Shakespeare’s metabolic evaluation…. Today….?”

No,” answered Nurse LeAnn.

When will I find out….?” I anxiously pressed, as I cuddled with Shakespeare, “Tomorrow….? Next week….?”

We’ll call you when Shakespeare’s completion of a metabolic evaluation results come in,” promised Nurse LeAnn, “Dr. Hopf will see you shortly.”

Then Nurse LeAnn smiled warmly at my son and she walked on.

“I hope that Shakespeare is handling all of his medical tests well,” said Dr. Hopf, “We do not normally recommend so many all at once for such small babies. But his Mama Bear insisted. How are you doing, Desiree? We also do not normally recommend so many doctor appointments and medical tests for such small babies because of his or her parents’ emotions.”

Before I could even answer Dr. Hopf, suddenly, Shakespeare smiled hugely and had a giggle fit.

Awww….” said Dr. Hopf, “Shakespeare is being tickled by angel babies. Just listen to his giggle. That, or Shakespeare is enjoying a conversation with the angel babies who have earned their wings before him. It is what makes him unique.”

To which I wept wet, hot tears, as I held Shakespeare close, who suddenly {with little warning} stopped giggling and stared into space.

“We will discuss scheduling Shakespeare’s follow-up D.N.A. test appointment after the results of his diagnostic blood test come in,” said Dr. Hopf, “However. Shakespeare’s D.N.A. test will most likely not even be necessary once we officially know for certain that he has been diagnosed with…. Classic infantile Tay-Sachs disease.”

As I held Shakespeare close to my heart, I looked like an unflattering defeated knocked out boxer with puffy, black, and blue shiners.

Go home, Desiree,” Dr. Hopf wisely advised, “It has been a long, hard, emotional day for both you and Shakespeare. Have dinner with Bryan. Put Brenda to bed. There is absolutely nothing else I—or anybody—can do for Shakespeare here now…. Nothing but wait for the results of his diagnostic blood test to come in. Remember, Shakespeare is not only an angel…. He’s a baby. In the meantime, Shakespeare will eat, sleep and poop just like Brenda did at his age. He needs you. Shakespeare is obviously going to depend on your motherly love, nurturing and care. So will Brenda. And in order for that to happen, you need to take care of yourself. Go home, Desiree.”

Then, Dr. Hopf scrunched up her nose and smiled warmly.

“Speaking of pooping, it smells to me like Shakespeare has just had a bowel movement,” said Dr. Hopf, “Go home, Desiree.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Home? Under ordinary circumstances, that’s an incredibly beautiful place. As a stay-at-home wife and Mama? I know that this place—this word—is an enormous blessing!! Why? Because home is not only where the heart is, but it’s also a place where you can find belonging!! However, Shakespeare being afflicted with classic infantile Tay-Sachs disease was obviously not an ordinary circumstance. I didn’t want to go home. I felt like sitting on the seat of a motorcycle and riding her as fast as I possibly could. I wanted to run away from Reality. But, amazingly enough, I felt like riding that motorcycle with Shakespeare. Because deep down inside my heart and soul, I needed this precious angel!! Honestly? I did not want to tell Bryan—or Brenda—the cold, hard truth. Shakespeare was going to die. But as a married couple—as lovers—Bryan and I were in this classic infantile Tay-Sachs disease journey together!! He needed me just as much as I needed him!!

I changed Shakespeare’s poopy diaper and then I drove my ‘old’ 1970’s baby blue-painted Ford pickup truck home.

“You mean that your heart had to process all of this cosmic information {without me}, on your own…. In one long, emotionally stressful day?” said Bryan, as he cuddled with our son, after I told him about Shakespeare’s probable diagnosis of classic infantile Tay-Sachs disease, “All alone? You’re one emotionally and mentally strong woman who I married, you know that?”

“Well—although I did desperately need your loving support—I was not alone….” I said, as wet, hot tears flowed down my face, after I’d put Brenda to bed with her favorite story of “Forever Young” by Bob Dylan, “I had Dr. Hopf not only on my side…. But by my side, as well…. She is such an incredible pediatrician, a go-getter in the best way possible….!! I had their pediatric geneticist, Dr. Manning’s wise counseling and advice….!! She helped me through…. I had so many compassionate nurses…. There were seemingly countless nurses….!! I had at least two other doctors who examined Shakespeare…. So I was not really alone…. I just did not have you….”

“So let my heart, soul and mind process this Reality, this cold, hard truth….” said Bryan, as wet, hot tears filled his eyes, while he cuddled with our son, “If Shakespeare is afflicted with…. Classic infantile Tay-Sachs disease…. Then he is going to…. Die…. Before his fifth birthday…. Or even younger than that….?”

“Yes….” I said, through wet, hot tears which made my eyesight blurry.

“But we do not officially know for absolute certainty that Shakespeare is even afflicted with classic infantile Tay-Sachs disease….?” said Bryan, as wet, hot tears flowed down his face, while he kissed our son’s soft, round head, “What if all of these tests and doctors are wrong….?”

“Wouldn’t that be nice….?” I said, as I blinked back wet, hot tears, “But all of Shakespeare’s doctors, tests—even his nurses—seemed absolutely positive that he is…. Afflicted with classic infantile Tay-Sachs disease…. Oh, Bryan…. Our flesh and blood, our own kin, our firstborn son is…. Dying…. What on Earth are we going to do….?”

Then Bryan and I cried wet, hot tears together.

“I already know what we are going to do….” Bryan finally said, as he cuddled with Shakespeare and wiped away wet, hot tears.

“What is that….?” I asked, through my own wet, hot tears, as I took Shakespeare from Bryan and I cuddled with him.

“We are going to live in the moment….” Bryan wisely said, as he wiped away wet, hot tears, “Because, right now, Shakespeare is sound asleep in his Mama’s arms….!! We are going to take this classic infantile Tay-Sachs disease journey one day at a time…. No…. We are going to take Shakespeare’s Life with us one breath at a time….”

“You’re so profound….” I said, as I smiled weakly through my wet, hot tears, while I cuddled with Shakespeare, “That is one of the many reasons why I love you….”

I paused for a nanosecond.

“You know how I was not really alone during Shakespeare’s seemingly numerous tests today….?” I said, as I cuddled with my son, “Well…. I could also feel the Lord’s loving grace, mercy and presence with me today….”

Wait…. Did you just say that you felt ‘the Lord’s presence’?” asked Bryan.

Yes….” I said, as wet, hot tears fell down my face like a sweet Spring rain, while I cuddled with Shakespeare, “I did…. I understand that we are not religious, Bible-reading, church-attending people…. But you know what Bob Dylan said about rediscovering God after he released Slow Train Coming, Saved and Shot Of Love….? It is absolutely true…. Jesus put His Hand on me…. It was a physical thing…. I felt it…. I felt it all over me…. I felt my whole body tremble…. The Glory of the Lord knocked me down and picked me up….!! You know what, Bryan….? It is amazing to me how when I felt so alone, I simultaneously felt so surrounded….”

“Really….?!” exclaimed Bryan, as wet, hot tears streamed down his face, “Because I, too, somehow felt the Lord’s loving grace, mercy and presence today while I spent quality time with Brenda!! Wow…. Although my experience was not quite as passionate as yours, I just felt…. God’s Peace upon me.”

Precious angel. That’s what our Beautifully Unique son, Shakespeare, is!! Complex thoughts, feelings and emotions have frequently washed over me like a freezing cold, mighty, foamy, saltwater tidal wave from the Pacific Northwest. It constantly felt as though I was drowning…. Drowning in my own seemingly never-ending, wet, hot tears. Even though Shakespeare was obviously not even officially afflicted with classic infantile Tay-Sachs disease yet!! Yes, Bryan and I knew absolutely nothing…. Yet we knew everything. However, I had two very important choices…. Either I drown in these never-ending, wet, hot tears of mine? As resulted, I would become conquered by complex thoughts, feelings and emotions. Or I take up my metaphoric surfboard!! As resulted, I would ride these stormy, turbulent, hurricane-like waves, if you will, as though I’m Bethany Hamilton!! And to quote Romans 8:28 from the Bible…. ‘….we know that for those who love God all things work together for good, for those who are called according to His Purpose.

Yes…. While most people would feel angry at God during these circumstances, Bryan and I accepted Jesus Christ into our hearts!!

“How long do you suppose it will take for the results of Shakespeare’s diagnostic blood test to come in….?” I anxiously asked Bryan that very night, while lying in bed together, as wet, hot tears flowed down my face.

I do not know….” said Bryan, as wet, hot tears flowed down his face, while he cuddled with Shakespeare, “But one thing is for absolute certain…. God knows….!!”

“How long will it take for us to officially find out if…. If Shakespeare is afflicted with…. With classic infantile Tay-Sachs disease….?” I anxiously asked Bryan through my never-ending wet, hot tears, “Will Shakespeare be seventeen months old when the results of his diagnostic blood test come in….? I read a story Online about another precious angel…. He was diagnosed with classic infantile Tay-Sachs disease at that age, because his doctors initially declared it as being cerebral palsy…. Oh, Bryan, I cannot wait that long….!!”

I passed for a nanosecond.

Shakespeare could either be…. Dead…. Or…. Close to it…. By then….!!” I said, as wet, hot tears freely fell down my face, “Dr. Hopf’s youngest precious angel patient passed away at merely eighteen months old….!!”

To which Bryan speechlessly swallowed hard through wet, hot tears…. I could see his Adam’s apple moving.

“Please say something, Bryan….” I said, “I desperately need your profound insight right now….”

“To quote Isaiah 40:31 from the Bible…. And I am going to feel like a zealous preacher by saying this, but it is all I have….” said Bryan, as wet, hot tears filled his eyes while he cuddled with Shakespeare, “‘….they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.’ What I am trying to say is that we need to wait upon the Lord….”

“But I am not a very patient woman….” I said, as wet, hot tears streamed down my face, while I took Shakespeare from him, “Waiting isn’t my style…. I need to know the result of Shakespeare’s diagnostic blood test…. Right now…. Because the suspense is killing me….”

“I know you aren’t a patient woman….” said Bryan, as he smiled weakly through his wet, hot tears, “Which is one of the many things that I love about you….!! And, Desiree….? I understand that waiting can be hard…. It sucks, huh….?”

Yeah….” I said, while wet, hot tears streamed down my face, as I cuddled with Shakespeare, “This entire situation sucks…. It is not only the waiting for a diagnostic blood test result…. Classic infantile Tay-Sachs disease sucks…. I mean, Shakespeare is afflicted with…. With a terminal illness…. Our son is…. Dying…. For obvious reasons, that sucks…. You and I may hope in the Lord {with definite conviction}, but that does not make Shakespeare’s circumstances suck any less….”

Precious angel. That’s what our son, Shakespeare, is!! As it turned out—thanks to my impatience and persistent Mama Bear go-getter attitude—roughly thirty days later, {when Shakespeare was seven months old}, I received the dreaded telephone call from Dr. Hopf. Shakespeare’s diagnostic blood test, genetics testing and metabolic evaluation had all came in. Our worst nightmare, our biggest fret, our worst fears suddenly became Reality. Because Dr. Hopf—plus Dr. Wivell, Dr. Manning and Dr. Damon—all officially diagnosed Shakespeare with classic infantile Tay-Sachs disease. As resulted, his follow-up D.N.A. test was obviously unnecessary. What I had already instinctively known for several weeks suddenly became our dreaded cold, hard truth.

Shakespeare was officially afflicted with classic infantile Tay-Sachs disease.

To be continued….
















































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