Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 16, diagnosed with Prader-Willi Syndrome and Weston 19, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Wednesday, October 17, 2018

Harvard Boy Takes a Beating

I awake at 7:00 am on Sunday morning

"MOM, I GOTTA GO....!"

I stumble out of my doll furniture bed with a start.

At my feet, I accidentally shot-put the plastic urinal container clear across the room.

It ricochets off the wall and bounces onto the floor like a ping pong ball.

My legs are wobbly and my mind still groggy
from another restless night of interrupted sleep,
with nurses aides checking Nick's vitals every hour on the hour.

"HURRY MOM," Nick pleads.

I make it to the bathroom without another field goal attempt or accidental injury.

I grab a container and head to Nick's bed.

He pee's into the jug and I almost faint.

Nick's urine is the color of coca cola.


I quickly snap a photo.

As a seasoned frequent flyer to BCH inpatient care, 
I have learned the importance of documentation.

I press the call button.

The lovely young nurse's aide arrives.
She is smiling.

I show her the sample and express my concern.

"Oh wow," she says, her expression unchanged.
She marks down the quantity of urine into her notes
then flushes the sample down the toilet before I can stop her.

What did I tell ya?


It's Sunday so Mike is off for the day.
Our new nurse explains
 that the Ortho team is making its rounds
 and will be in shortly to speak with me.

It isn't long before the astute, handsome, Harvard grad
 and his multitude of mindless minions file into our room.

"I understand Nick's urine is a little discolored,"
this brash young Attending states annoyingly.

"A little?" I answer snidely.

And so it begins.

The game is on.

It's called the "I know better game"

 and it is played with annoying arrogance 

social workers
insurance companies
and a host of ignorant others

Folks whose ego or avarice delude them into believing
 they fully comprehend
the complexity 
associated with your child and his/her diagnosis

It pisses me off.

Typically, I have a lot of patience, even some fun, when playing this game.

But not today.

Harvard boy goes into his robotic instruction mode.
The minions huddle around him like mice.
 He explains how when they operated on Nick,
 they scraped some of his muscle tissue
 which caused some discoloration of his urine.

"SOME?" I ask
I show him the picture.

He is losing control of our conversation. and he is not comfortable.
"You do not need to overreact here," he says
 then catches himself.
"Not that you are overreacting.....!"


I am tired
I am cranky
I want to go home
I do not want to hear some lame ass theory
 thrown at me like I am some moron of a parent.
I do not want to be told I'm over reacting
(I do not like green eggs and ham. I do not like them Sam I am)

"Do you see this photo?" I ask the socially awkward droid.

"Yes," he replies sheepishly.

"Well in the world of special needs parenting.....this is a WTF!"
I explain.
"This is not some mild urination discoloration we're talking about

this is COCA COLA

I AM over reacting.

I believe my response is directly proportional 

and completely appropriate

to the level of intensity of the situation.

Not to mention the fact that Nick's urine has been clear for a week.

Your theory does not compute.

I want to understand what's happening to my son.

Your explanation isn't working."

Then comes


"I've been treating kids with special needs on this floor for many years."


If you are a medical professional reading this blog, 
please don't ever begin a conversation about your patient's care using the word "I"
It is never, ever about YOU.


I resist the urge to punch Harvard boy squarely in his chiseled jaw.
I resist the urge to ask him sarcastically,

"What do you want a prize?

 In fact, for me, I show an unusual amount of restraint.
My brain must be on overload
for it is highly unusual for me to miss out on such
a perfect unloading opportunity.

"Look," I say to Harvard boy,
what you say may be true,
 but I don't believe we have found our answer.
I would feel more comfortable
 if you had performed a urinalysis
before arriving at such a conclusion.
I would like to hear what Complex Care has to say."

With that he turns and leaves the room,
his minions hurrying close behind
none of them wanting to be the last out the door
for fear that I may eat one of them.

Tuesday, October 16, 2018

The Other Boston Garden

On Saturday afternoon,
 the A Team
informs me and Pete
 that Nick's culture did not blossom into an infection;
 so they are removing his antibiotic.

Me and my big mouth I think to myself....!

When are antibiotics ever a bad thing 
to a parent whose child just came out of surgery?
I wonder.

The Lasik on the other hand, is working like a charm.
Nick is peeing so much and so fast,
I can hardly keep up.

"Mom, I gotta go," he says, groaning urgently, 
I search like a mad woman
for just one of the fifty million containers
I have hidden around the room.

A few of them bounce off his tray table
 and onto the floor,
just out-of-reach and under his bed.
"Shit!" I holler.
"Mom! Language!" Nick scolds.
I run into the bathroom to search for another
clean, cold, sterile, plastic container.
I run back to Nick who fills it nearly to the brim.

This massive release of excess fluid is helping Nick to lose weight.
 He is becoming very thin.
 His arms, legs and torso are noticeably trimmer.
He is no longer inflated.
He is transforming, almost overnight, into a very different looking young man.

He is still in pain however, and very stiff from the operation.
 His mobility is greatly reduced and there is not much for him to do in bed.
He is becoming frustrated.
I am equally agitated as noted above.

The staff suggests we visit the 11th floor garden.
"Boston Children's has a garden?" I ask in disbelief.
"We have been coming to this hospital for 16 years. 
I never knew they had a garden until today!"

"Oh there was another more beautiful garden before, but that one was torn down,"
a nurse explains and suggests I read a good book
 written about Children's that is for purchase in the lobby gift shop.
I run down and pick it up,
hoping for a worthy distraction.

I flip through the first few pages and am immediately engaged. 
It is mostly a pictorial review of the fascinating history of this evolving institution.

What struck me almost immediately about this hospital's history
 is it's founding principles.
In the 1860's, one of its founding physicians,
 Dr. Francis Brown,
 studied the importance of natural light and air quality
 in hospital architectural design, 
pioneered by none other than
Florence Nightingale.

(But she is a post for another time)

In fact, the very location in which Children's Hospital sits today
 was chosen specifically for its lovely, spacious, country farm setting
and its therapeutic effect on patients
who, at that time, were afflicted with tuberculosis.

I am saddened to learn how these core values have changed.

How industry, profit and ego have over-shadowed
patient-centered care.
It seems ironic to me now
 how Nick and I feel depressed and suffocated,
lacking from those very same core qualities:
natural light and fresh air.

We decide to bust out of our room and find this elusive Garden.
Nurse Mike finds us a wheel chair. 
Pete helps me place our frustrated son directly into it.
We head out to the elevators
and per the nurse's instructions,
follow the butterflies to the 11th floor.


The doors open.
 On the walls are a trail of hand-painted butterflies.
They lead to an outer sliding glass door.
It opens and we are blinded by the warm brilliance of the sun 
and the colorful beauty that is Mother Nature. 

We are calmed by her silent majestry.
There is a small grassy knoll.
I long to move Nick's bed here.

We find a sunny spot to park.

We take the very tall Nick for a lap around the rooftop
(all he can tolerate for now)

Views of the city
That square building
 front and center
is the parking garage,
where, if you remember correctly,
we usually park our vehicle.

view from below
many years ago

I realize how much I have missed the color blue
and the expanse of a crystal clear sky.

I run up the grassy knoll
throw my arms up over my head
and dance.

Nick laughs for the first time in days. 

I believe Florence Nightingale knew exactly what she was talking about.

Monday, October 15, 2018

Complex Care Team

Saturday morning arrives and the Complex Care team accompanies Mike into our room.

This is the Holy Grail of medical professionals.

The A Team

They emote a calm confidence. While other medical professionals scurry around scratching their heads, these folks move in slow motion, carefully observing their latest project, gathering intelligence and formulating a plan. They understand the importance of timing and parental input. They know how to guarantee a successful outcome. It's instinct. With this kind of expertise comes a high level of spiritual energy. It's what I imagine it must be like being treated by Mother Theresa or Florence Nightengale.

This group has seen it all. They know how to diffuse a situation. They know how to deal with a tired and frightened parent.

"We are considering moving Nick back to the ICU or the Complex Care Floor," they tell me. "His lung capacity is greatly reduced."

They show me the x-ray Cheryl took of his lungs last night and compare it to an x-ray taken two months ago.

"You can see two months ago, Nick's lung capacity was at 50%, greatly reduced by the curvature of his spine compressing on his rib cage. If you look now, you'll see Nick's lung capacity is at 25%."

If a picture is worth a thousand words, this x-ray is priceless.

The photo shows barely any inflation of Nick's lungs. I am horrified.

And grateful for Cheryl and her quality of care.

"I don't think Nick can handle another transition," I explain. "He has received excellent care here from staff who know him well." I plead, remembering our episode with the missing ICU nurse and the pulled breathing tube.

"We have several patients on this floor who receive care from the Complex Team," adds our nurse, Mike, who is as anxious as I to try to keep Nick on the Ortho floor.

"Nicholas has retained 12 pounds of excess fluid and has what may be a urinary infection," they continue.

"I do not understand how he can have a urinary infection when he displayed no fever and expressed no pain when urinating?" I asked. "The next time I come to the ER when Nick is in pain with no fever, I do not want to be patronized and sent home empty-handed," I state in an I'm beginning to become unhinged kind-of-tone.

OK, so I know the statement was a little over-the-top in a "no more wire hangers" kind-of-a-way, but, I was tired and cranky and did not want to return to the ICU.

"We added the antibiotic, because we cast a very wide net when we perform a urine analysis, especially if we see any cells that are unusual and we cannot identify," the Attending responds in a perfectly cool, calm and reasonable tone. We will remove it if we do not see any growth on the culture."

"I understand," I say, trying to regroup and exorcise the Joan Crawford from my beleaguered body.

"We are going to continue treating Nick with the Lasik to remove his excess fluid. We are going to continue to have Nephrology consult on his case. We would like to see him lose the 12 pounds of excess fluid and resolve his infection."

"That sounds perfectly reasonable," I say, "I would really prefer not to transition Nick to another floor. I don't think he could take it behaviorally. I believe the staff here are capable of providing Nick these services. They do not seem over-the-top to necessitate an ICU visit. What do you think?" trying, this time, to evoke the more neighborly, Mister Rogers persona.

"We do have several patients that we visit on this floor," they explain, "we would be willing to keep him here provided his status does not change."

"It's a deal," I say, thankful and relieved that Nick and I will remain under the watchful eyes of our favorite and faithful caregivers

This was one of the pictures in our room
(Cheryl and Mike)

Thursday, October 11, 2018

The Guardians

There are times throughout Nick's life
when I have felt like we were in the presence
of earthly angels.
Folks strategically placed on our path
sent to us at the right time
for exactly the right reason.

I have never felt this sensation more strongly, than during this visit to Children's.

It is now Friday.
Nick has passed all his discharge objectives.
He is urinating on his own.
The color is back to normal.

The output quantity however, does not match his fluid intake.

Nick complains of bladder fullness.
Mike wonders if we need to reinsert the catheter.
He performs a bladder ultrasound and finds that Nick's bladder is empty.
"Inserting a catheter now would be pointless," he says,
"Nick has no urine to drain."

Mike and I agree, something just doesn't look right about Nick.
His face is flushed.
His body looks puffy.
We measure his height and weight.

Although he has gained two inches in height and now stands a whopping 5'10
He has put on 12 pounds of additional water weight.
He has barely had much to eat.

But from an Ortho perspective, he meets the criteria for discharge.

Mike and I decide it is time to get the Complex Care Team involved.

Thankfully, they slam on the brakes and override the discharge decision.
It is a move that will save Nick's life.

Nick's urine output starts to slow even further.
The Complex Care Team performs a urine analysis and thorough review of Nick's meds.

They have discovered some inaccuracies and meds that have been missed.
They also believe Nick has what looks like a urinary infection.
 They place him on an antibiotic until they can see if a culture is grown.
They ask nephrology to come in for a consult.

Nephrology explains that in reviewing his bloodwork,
Nick's kidney's are functioning perfectly.
He has however, retained a great deal of fluid in his body tissue.
This, they say, can happen to some folks after surgery.
They suggest he receive a medication called Lasik.

Lasik will help him to urinate.
It must, however, be given gradually
or it will interfere with the body's electrolytes
 creating a fluid imbalance which can be life threatening.

They would like to hold Nicholas over the weekend for observation
 to see if the Lasik will help his body to release the excess fluid.

Mike gives Nick the Lasik and it begins to work instantly.
Nick's pee is crystal clear yellow and nearly fills the container.

It is now night time.
I am exhausted with worry and information overload.
I am happy to hear that Cheryl and Troy are on tonight.
I am in need of a good night's sleep.
My head hits the pillow and I am out cold.

Suddenly, I am bolted out of bed by the sound of alarms and loud voices.
 There is the sound of urgent command and immediate scurry around Nick's bed.

Cheryl has wheeled a portable x-ray machine into the room.
 She is taking a photo of Nick's chest.
Troy and several nurses aides are helping to calm Nick and position the equipment.

Suddenly, it is as if I have become the small boy's parents 
and I wonder if perhaps this is a dream?

"What's going on?" I ask, grabbing Nick's arm and checking to see if he is conscious.

He is.

He looks at me but his breathing is labored.

"I am taking an x-ray of his lungs for the doctors," Cheryl replies.

"Why?" I ask.

"His heart rate, blood pressure and respiration are elevated." she said.

He's having a hard time breathing," says Troy.

"What do we do?" I ask feeling helpless and scared.

"We get this x-ray to the doctor's as soon as possible, " says Cheryl

"And watch him like a hawk until then" 

she states with steadfast allegiance.

Wednesday, October 10, 2018


The next morning, Mike enters our room
He is upbeat and smiling.

He is on a mission to get Nick to move.

He tells us that Nick will be discharged if he can do 4 things:

1) Walk unassisted
2) Climb a set of small stairs
3) Produce a bowel movement
4) Remove his catheter and urinate on his own

His plan for us to "get moving" is a good one.

It distracts us from ourselves.

I am still sad and anxious to learn more about the boy from last night.
But for privacy reasons, the staff is unable to give me an update.
My heart aches for an answer.

I head to the parent's café for the coffee I know is not there.
I pass his room.
It's empty and quiet.
I feel like I am returning to the scene of an automobile accident,
only there are no skid marks or shattered glass,
there is only silence,
like a dark hole
absorbing the surrounding energy
 like a sponge.

In my mind, I picture the smiling boy and his family
and pray for their safety.
I hope that all is well as Troy said;
perhaps he has been transferred to the ICU?

I will never know for sure.

When I return to our room, the physical therapist is waiting
 to perform her evaluation of Nicholas.
She walks down the hall with him and determines that he can walk unassisted.

I feel blessed and fortunate.

Objective number one...achieved!

Three more to go and we are homebound.

She brings us into the Physical Therapy Department.
Tucked away in the corner of the room, is what looks like a giant step stool for adults.
"Can you walk up these steps?" the therapist asks, whose name also happens to be Lisa.

Nick grabs the railings and moves up the stairs like his pants are on fire.
He is as anxious as I
to go home.

"You did it!" Lisa says.
"Well from a physical therapy perspective, you are cleared for discharge."

Objective number two....achieved!

We return to our room where Mike is ready for the removal of Nick's urethral catheter.

Much to Nick's displeasure, this catheter and collection bag
 have been in place since day one.

Upon insertion, it took a lot of coaxing
to help him understand the concept that this catheter
would allow him to go "pee" without wetting his bed.
He eventually got the hang of it.

The staff has been observing and measuring Nick's urine output every day.
The color has also lightened from dark red/orange to now a more amber hue.

He has also been wearing adult diapers since he is unable to move
quickly enough to make it to the toilet.
So far, however, he has not had a bowel movement.
Mike explains that this is not unusual after any surgical stay.

Mike begins to perform the catheter removal procedure.
Which, no offense to Mike, requires the aptitude of a 4-year-old.
He simply pulls out the tube.

Mike hands me a multitude of urine collection containers
and tells me I need to collect Nick's urine.
I feel like I am back in high school chemistry class.

I distribute them around Nick's room like Easter egg's

It is now time to address Nick's flush.
From previous discussions with ICU's nurses,
it's becoming clear that Nick's appendicostomy procedure
is something of a novel condition in the world of nursing practices.
None of them know how to do it
or what to expect from it.

This is unfortunate for me,
given Nick's immobility and access to the toilet.

I explain to Mike, the age old adage:
what goes in must come out

So with this in mind
 1,000 mls of saline,
must find its way out
and quickly
no matter what....!

He's not convinced
but we set Nick up on a portable toilet near the bathroom
just in case.

Mike hands me the supplies.
 I hook his kangaroo bag to the IV pole
and assemble Nick's apparatus
like a seasoned mechanic changing oil.

I perform his flush as quickly as possible.
Nick is not able to withstand the back pain, so he quickly climbs back to bed.

I know what's coming but there is nothing I can do.

I clear a path to the bathroom and wait.

It isn't long.

"Mom I need to go," Nick says.

I try to get him up and out of bed
but he is now very big and tall
 and difficult to maneuver.

As we approach the bathroom, the 1,000 mls of saline
exits the premises.
It runs down his legs, socks, shoes and onto the floor
creating a path behind us.

I am careful we do not slip and further injure Nick's back.

I gingerly place Nick on the toilet
and grab the few towels I have on hand in the bathroom.
Mike enters the rooms and quickly exits to gather more towels.

When he returns, he tells me there is a drain on the floor of the bathroom
 and that the shower has an detachable head.

I wonder if it reaches his bedside?

Nick is not able to sit too long because of his back pain.
I begin to go into panic mode.

Suddenly, Pete appears.
And I can breathe.
We instantly go into trapeze artist mode.

He showers down the aching patient
while I perform floor clean-up duty
while we wait helplessly for
housekeeping to arrive on the scene.

Objective number three.....achieved!

Sunday, October 7, 2018

Smelling the Coffee

So far, Nick's progress has been spectacular.
We take daily walks on the Ortho floor
 to strengthen his muscles
 and improve his movement and stability.

We keep busy in bed with toys from the activity room.
He became very attached to this cash register.

"Mom," he said, "I'm just like Mr. Crabs, I love me money!"

It feels like we are entering the home stretch
 as we begin to long for home and a pending discharge date.

 On the Ortho floor, we begin to notice other patients and families.
Funny how they seemed invisible until now.

Today, we see a small 5-year-old boy.
His head is encircled by a brace made of heavy metal, thick rods and tight screws.

This is not a photo of the boy, but I swear they could be brothers

He is pushing a walker that is shaped like the frame of a tent.

He is walking in the center of this mini tent-on-wheels.

It takes up most of the hallway.

Nick and I step away so he can pass

and as he does, we notice

 he is smiling 

delighted by the progress he is making.

He is not angry or bitter or sad.

His eyes are twinkling.

He is free.

I am reminded of Nick's happy walker days.

I am humbled.

I believe it should be required of every individual
that they spend at least one night a year at any Children's Hospital in the country.

To gain perspective.

This sweet boy and his parents enter the room two doors down from us.

His parents look withdrawn and tired, old before their time

and I wonder, if perhaps, I do too.

Soon, it is night, and Nick and I settle into our routine.

I brush my teeth and put on my pj's.

I adjust Nick's pillows, and then it happens.

The alarm sounds.

It is a Code Blue.

Every available nurse, aide and doctor run past our room.

They are scared.

I look outside my door and see them enter the room of the sweet, little boy.

He is in cardiac arrest.

A team of nurses and several policemen are swarming outside his door.

I close our door.

Soon, I hear the loud pounding of frantic footsteps running furiously past our door.

I believe it is the boy's father.

I do not have the courage to open our door.

Tears fall from my eyes, uncontrollably.

Nick asks me what's wrong; but I cannot speak.

Eventually, I peak out our door. 

I see personal belongings in plastic bags being handed to the police officers.

I close the door shut.

I am in shock.

Soon, one of the young nurses knocks on our door.

"Hi, I'm Laurie," she says, 

"I just want to know if you guys need anything?"

She is smiling; but I can tell she is shaken.

This is Boston Children's.

It takes a lot to unravel these consummate professionals.

"No, we're fine," I tell her and I'm not sure who is comforting whom.

She closes the door.

Not long afterwards, there is another knock.

Another nurse, asking again, if we need anything?

She too, is visibly shaken.

"We're good," I tell her, "But thank you for asking."

She leaves but once again there is a knock, this time it's Troy.

"OMG Troy, what's happening, is he alright?"

"I can't tell you what's happening,"  he says.

"For God's sake, I say, "Please just let me know if he's alive."

"He is." he says.

"Oh God, thank you!" I tell him.

"Yeah, we're all shook up. This doesn't happen often on our floor."

Then he says it.

"This boy is a lot like Nick, very sweet."

With a dagger to my heart, I am reminded of our good fortune.

Troy hangs in our room for a long time.

Like me, and the nurses before him, 

Troy's sensitive heart is having trouble coping with this potential loss.

Nick's energy and goodness, his similarity to this small boy

 is somehow comforting to these caregivers.

We are all reminded, at times, of the fragility of life.

I think of how I have taken all of Nick's successes for granted

and how selfish I have been to complain

about anything.

I call Pete and sob.

Saturday, October 6, 2018

The White Tornado

It's night,
 Pete heads home to care for Weston,
 who has told us that this hospital visit 
is just too difficult for him to visit with Nick. 
He no longer wishes to see his brother endure such pain.

I think the steady flow of Nick's appointments and hospitalizations
 has begun to take its toll on Weston, 
his kind heart and his deep love for his brother.

Nick and I are introduced to our night nurse, Cheryl.
She will also be assigned to us throughout most of our hospital stay
 and will come to play a very big part in saving Nick's life.

Cheryl is a Force of Nature

She is a smart, competent, 
a take-charge and get-out-of-my-way-while-I'm-doing-it

sharing similar energy, 
in the "real world" we would probably clash
 but as an advocate for Nick and me, 
she is exactly what we need.

"This room is a mess," she says and without hesitation, 
she single-handedly pulls out chairs, trays tables and unused equipment.
 She places them in the hallway outside our door, 
freeing up space for my mini bed.

"That's much better she says." proud of her handy work
which will soon become a nightly routine. 

The room is immediately lighter, brighter and conducive to sleep.

Instinctively, she readjusts Nick in his bed, 
rolling him to his other side and fluffing his pillows.
She covers him with his Dora blanket and places Daniel Tiger by his side.

"I'm going to get his meds now, so he can get some rest."
She is back in an instant 
with all of his correct medications.
Suddenly I realize
 Nick and I have not had a decent night's sleep for days.

Without saying a word, she nudges me toward my own bed
with her "I got this....! Now get outta the way!" demeanor.

"Troy is going to be my assistant tonight," she says.
and almost on cue 
the handsome, young man pokes his head into our room.

"Can I get you guys anything?" he asks.
"Hi Troy!" Nick says with glee.
"Hi buddy," he responds.
"I think we're all set," I tell him.
"Try to get some rest," he says.
"I promise not to yell at you anymore," Nick tells him.
Troy places his hand over his heart and tells Nick:
"You don't have to tell me that Nick, I'll always be here."

Cheryl shoos him out of the room.
"These folks need their rest now," she says.
She turns down the lights and leaves us
alone and finally within a quiet room.

It is the first time
since his admission 
that Nick and I 
have had some peaceful down time together.

The silence is like a warm blanket.

I put on my pajamas and make up my chair/bed,
pulling it up beside Nick.
I sit beside him and scratch his head.

It isn't long before he's fast asleep.
I lay down and soon fall 
fast asleep to the sound of Nick's rhythmic breathing.

Throughout the night, I hear Troy and Cheryl
move Nick to his other side
give him his pain meds
and check his vital signs

But I am too tired to stay vigilant 
and too confident in these two kind and compassionate souls
to care.


Friday, October 5, 2018

Second First Steps

It's morning.
We are now on the 10th floor Northwest.
The No Nonsense Ortho Floor.
We are introduced to Mike.

He will be Nick's nurse for the duration of our stay.

This, pursuant to Nick's need of familiarity
 and the recommendation of the Behavior Plan.

I have yet to actually meet the Behaviorist
who wrote up Nick's plan
what did this woman do
 to motivate so many folks into action??

She should run the country...!

Our new nurse, Mike is a kind, experienced, out-of-the-box thinker
and devoted caretaker.
 We become vey fond of him during our stay at Children's.

He reminds me of one of my favorite cousins
 who used to read Mad Magazines with a flash light under his blankets
 and tinker with do-it-yourself science kits.

We liked him immediately.

Mike tells us that our objective for the day is to get Nick walking.

He explains that there is a process to spinal fusion recovery.

First, we must get Nick to tolerate sitting in a chair.

Once he does that, the next step is a short walk.

He looks at my chair/bed and laughs:

This chair is too small!

He searches the floor and finds a man-size chair for Nick.

He brings it into the room and places it beside Nick's bed.

He shows Nick exactly where he needs to place his hands and feet
to raise himself out of bed.

Nick is stiff and sore but is compliant to the sound of Mike's calm voice.

Within seconds he is standing, immediately, we notice he is taller.

Much taller.

Dr. Glotz told us that by straightening Nick's curved spine; he would be taller.

We did not understand the full potential of this statement.

Pete and I cry at the sight of this tall, straight, slim young man.

Mike seats him in the chair and places pillows to support his neck and spine.

It isn't long before he falls fast asleep.

I smile at what is now a stark incongruity
 of a tall young man and a Dora blanket.

We put him back to bed to rest some more.

Later, it is time.

Time to take those important first steps.

Mike helps Nick to stand.

He is a little wobbly at first.

They round his bed corner

They exit his room and venture out into the hallway.
His head is held high.

Mike supports him from behind
while his one-on-one aide 
stands behind them in the gray hoodie.
Nick is tentative and cautious
unaccustomed to his new height and full upright position.
He is as tall as Mike.

Mike explains that Nick's muscles will be sore
 as they readjust to a straightened spine,
but walking is by far, the best medicine.

Eventually, Nick builds up his courage
 and asks to take another lap with Dad.

To see Nick take his first steps, for the second time in his life
 as a straight, tall and healthy young man

is to be given a most precious gift.

We are grateful beyond words.

Thursday, October 4, 2018

Crash Landing and the Fall Guy

The No Nonsense Nursing Team arrives at the ICU 
to remove Nick's extra IV's and transport him to the Ortho floor. 
We are finally moving. 
Our missing nurse suddenly reappears; 
but the show is already on the road 
with or without her.
Yeah, baby.
We arrive on the 10th floor Northwest.
 I am happy to see Nick has his own private room.
Daniel Tiger and Dora the Explorer are waiting to welcome him.
God Bless the Behavior Plan.


Happy dance!

I look out the window and smile.

knowing Pete's gonna have palpitations over this view.

I locate what will be my bed for the next eight days.

It's a kid-sized chair and reminds me of:

Goldilocks and the Three Bears
This one is too small!

I wonder, once again, 
what the heck is the sleeping protocol for parents who are taller? 

I search the hallway for the now ravaged linen cart.

I manage to rustle up a few sheets and a blanket.
There are no extra pillows and only a few unfolded towels and face clothes.

I find the parent's kitchen where there is never any coffee.

I grab a can of gingerale and some saltine crackers. 

It is now 7pm and as I feared our nurse is having trouble
 finding the time to review and assemble all Nick's meds from the pharmacy.

Nick and I are dog-tired from several, stressful, sleepless nights.

By 10 pm we are already ready for bed.
I pull out my chair, assemble the sheets hastily and fall fast asleep.

I am soon awakened by the sound of my son cursing up a storm.

Yep, sweet, good-hearted Nick is kindly telling the nurse's aide to:
"F-off, you people!"
"Stop, f-ing waking me up!"
"I f-ing hate you!"

"NICHOLAS!" I shout, springing up from my chair-bed.
I begin to realize what is going on around me.

They have taken him off the Bi-Pap machine so he can get some sleep.
He is having episodes of delayed breathing.
 He is sounding the alarm at the nurse's station.

The tall, handsome, young man, Troy, is coming in to wake him.
 He is asking him to breathe.
He places the oxygen mask near Nick's face
 so he will get enough air to breathe.

There is also an aide sitting by his bedside.
Where the heck did he come from, and when did this happen, I wonder?
That's some pretty sound sleeping...?!

And Nick?
 he isn't having any of it.
So what if it's 2 in the morning. 

Pete's Dad was an over-the-road truck driver,
I believe the words coming out of Nick's mouth
would have startled even him. 

I, on the other hand, 
am not about to see my son abuse caregivers
 who are literally trying to save his life.
Granted Nick is tired, cranky, stressed
 and coming down from some pretty hefty pain killers.
but I need to address this behavior now
and put a stop to it immediately.

"Nicholas, I did not raise you to speak to people like this. 
This is Troy. 
He is here to help you. 
If you do not behave, 
then there will be consequences."

"Go ahead, I don't care, I hate these f-ing people."

I take away his dvd player and return to my bed, ignoring his bad behavior.

He can not do much about it since he is not able to move or stand.

He cries and swears and yells
and cries and swears and yells some more
until finally I hear
"I'm sorry Mummy"

I return to his bedside.
I ask him to apologize to Troy.

"I'm sorry Troy,"
"Can you please forgive me?"

The handsome, young nurse, tries not to laugh: 
"We're cool Nick. I'm just here to help you out buddy!"

"Oh, thank you," Nick says and I begin to see the old Nicholas return.

The next morning Pete arrives early, rested and refreshed, to bring us some breakfast.

"Daddy!" Nick says sternly.

"You and Weston have to stop teaching me bad words!"
"Your bad behavior just has to stop!"

Pete looks at me and laughs
"When did I become the fall guy?"

"Don't ask.....!" is all I can say.