New Year's Eve, 2009

SO …..

 

It is New Year’s Eve, 2009….. and I have never before looked forward to the new year as much as I do today.

 

Not that tonight will be anything special, in fact it will likely pass with barely a notice from Eleanor and I. We will likely Fall asleep around 10 (oh, can you stand the excitement ?) wake up at midnight long enough to wish each other (and the kids if they are awake) a “Happy New Year” and then fall back asleep.

 

But tomorrow morning…I can’t wait… a new year, a new beginning. Nothing will really change, I will probably work around the house, pay bills, catch up on paperwork BUT the attitude and perception will be different. It will no longer be the worse year of my life;

• NOT the year our son died
• NOT the that I lost my Florida condo
• NOT the year that I accept the likely loss of my other CT property
• NOT the year we needed counseling to get through our grief
• NOT the year I hit a pedestrian

 But rather, it;

•  WILL BE the year I regroup, lick my wounds and rebuild my financial life
•  WILL BE the year I reinvigorate my “career”
•  WILL BE the year I resurrect my entrepreneurial plans and efforts
•  WILL BE the year I reconnect with my kids after being absent fronm their lives during and after Andrew’s illness
•  WILL BE the year I move beyond the reminders (but never the memory) of Andrew

It will be the year I stop questioning (my) GOD for all that has happened and instead pray for an understanding of why it happened and the wisdom to use the experiences to batter myself and the lives of my family.

 

It will be the year that we survive and we thrive

 

The stake gets hammered into the ground at midnite … stay tuned

Christmas is behind us, now for New Years

Well, Christmas is finally behind us and it was a very strange weekend. Although we decorated the house , it was mostly for Annie and AJ, and if not for that you would not have been able to tell it was a holiday.


Annie and AJ spent Christmas eve and most of Christmas day at Allison's and then at friends. They wanted to and we agreed since the events of this year were likely to overshadow any joy and we don't want them impacted any more than necessary.

El and I spent the weekend like we would any other day. Fell asleep around 9 on Christnmas eve and spent Christmas day doing odd things around the house.

It was a tough night and day, really tough.

A bright spot however in an otherwise really bad Christmas though was that we had dinner and visited with my aunt and uncle and their daughter. It was so "normal"  to be with family and not talkor think about Andrew. I am so glad we went.

Saturday and Sunday were spent finishing up the move from the (now) old house. I still think nieghbors are sneaking in at night and leaving stuff there - this just never ends.

But I reached a benchmark of sorts. I quickly ran out of room for things with the (now) new house being smaller and only a one car garage, and the garage filled quickly mostly because Andrew's bed and other paraphenalia is in it.

I found myself cursing the bed ... and immediately fell sad at the thought that this bed that had made it possible for Andrew to live home all those years was now just an annoyance ...how could I feel that way ?.
Maybe I am just finally accepting everything.

I need now to get through New Year's Eve. We never really did much on New Year's Eve to celebrate but this year will be even less in the way of physically partying .... BUT ... I am mentally and emotionally celebrating like never before at the passing of 2009. January 1 is my stake in the ground, the day when I can say this lousy year is behind us.

Merry Christmas

So here we sit on the brink of Christmas Day, 2009.


This is the year that my life, and the lives of my family, has been shaken to the core. Almost everything I ever feared might happen has happened this year but somehow I and my loved ones, excepting Andrew, are still standing.

But we will survive and even prosper.

This year began, already bad for a lack of work in 2008, and went horrible with another period of downtime followed by a cut in income. Like everyone else, asset values tanked and net worth dropped. Florida became a total drag as the tourism ceased to exist and my management company “grew” itself out of existence for the non-McMansion type rentals. And then we find out that our condo association has been screwing us (owners). Then, just to pour salt in the wound, the industry for which I spent the better part of three years building an application for – my shot at being an entrepreneur – basically ceased to exist in central Florida.

Second quarter began with suspicions that Andrew might have a health issue and progressed to a confirmation that there was indeed an issue and numerous tests to determine what it was.

Mid year kicked in with my tenants announcing that they would be moving at the worse of all possible times. A time when my rental place, which used to be one of (on average) 6 in Hamden, was now one of more than 100 as every homeowner in financial straights attempted to rent their homes in a shot at saving them from sale / foreclosure.

Mid year progressed as Andrew failed to recover from the surgery done to correct his suspected issue.. And as much as this little guy tried to hold on to life, and in spite of the prayers of more people I ever realized I knew, the mid year period ended with his funeral and unimaginable grief.

And so we come to the end of the year ……

Since Andrew’s death, my family has all but fallen apart. Issues in dealing with grief have overtaken our “normal” lives (as if anything is normal any more). The turmoil that accompanies these things has all but alienated Annie and AJ – who had already pretty much lost the parents they knew when Andrew went into the hospital – from us (I do understand this as much as it hurts) . Allison has moved to another town (albeit close by, she is no longer down the street), I am in process of losing Florida (it’s current value is 1/3 of the mortgage) , we have moved into our first (smaller) house to escape reminders of Andrew and to “save” that house in case things get worse , and just to end the year on a high note, I hit a pedestrian the other day when she ran out in front of me from between two stopped cars. Oh yeah, and I broke a tooth this morning.

So how exactly am I still standing ?. What purpose was there to any of this? Can anything else possibly happen ?

I take solace in knowing that Andrew is not suffering and is in that “better place” we all believe in. I believe that, as Allison so eloquently said in Andrew’s eulogy, “that Pepper (our Dalmatian that he loved and we had to put down two years ago) will once again meet you in joy and devotion at the door, waiting to be pet; that Nana, having guarded you for these intolerable months, will take you in her arms and call you “darlin’.” That the grandparents we never met will talk to you of Mommy, and that Grandpa Shaw will still be the only one allowed to call you Andy. That this better place I keep hearing about has a vast library of Disney movies and Stitch dolls and Gameboys that need no batteries.”

I choose to believe that the possible (and the probable) loss of property and/or it’s value is too make us realize how little property really means.

I must believe that the grief issues will bring us all closer and make us stronger, both individually and as a family.

I have no choice.

God, I am sooooo stupid.

I did it again ... What an idiot I am........ I am sooooo stupid.

I hit a low point the other day, a really low point as in I couldn't take any more and while trying to pull myself from the depths of despair, I went and said to myself "well, atleast it can't get any worse".

You know, even Andrew with all of his problems understanding and communicating would have understood that YOU DON'T SAY THAT because THINGS WILL GET WORSE.

Rewind the tape a bit - I never mentioned in this blog that Eleanor and I both were (are) having issues dealing with our greif over Andrew. We have been seeing someone to help us keep things in perspective - going about twice a week and hashing over our coping mechanisms.

Now fast forward a bit...Today, we have an appointment at 4:00 and I picked up El to get down to the appointment. Annie needed to be somewhere and had missed her ride so I agreed to drop her off as it was really only a few blocks out of the way, but it did cause me to take a different route to the appointment. So I wound up driving through New Haven on streets that I know (I did grow up there after all) but not ones I would choose to drive as a normalcy simply because of the traffic. Anyway, I was the first car at a light and when the light changed, I turned and proceeded (oddly and for once at the legal speed limit). All of a sudden, 10 feet in fromt of me (ok, it was really prbably 30 feet), a girl runs out from between two cars in the other lane. I nailed the brakes but still I hit her nearly at full speed.

I can now tell you that someone bouncing off the hood of your car really does look like they show it on TV.
I can now tell you that someone can be knocked out of their shoes (hers went about 50 feet).


Guess what, things just got worse......again .......BWAHAHAHAHAHAHAHAHAHAHA

Things are worse. Even being told by the police that I was not at fault, I have a nicely dented hood to remind me that things are worse. Maybe now when I start to think that things can't get worse, instead I'll just walk outside and look at the hood of my car

"Back Again" Plus Nine Days

So, the move is behind us now. Well, sort of. It is going on endlessly - I swear that someone is sneaking into our (now) old house every day and leaving things there since there is always something regardless of how much we take.


The new house is an example of organized chaos – boxes everywhere but at least (for the most part) in the room where they belong and reasonably well sorted.

We have so much stuff…........... George Carlin would have a field day with this.....

God's lab rat

A person who I am very fond of once exclaimed “I am tired of being God’s lab rat !! “.

At the time, I couldn’t understand the sentiment but I do now.

I feel as though I am in a maze and not only can I not find the exit but there are fake ones all over the place. I find the egress only to discover that it just leads deeper into the maze … and just for laughs, the floor is wired to give me a good electrical shock, at random intervals and for no apparent reason.

Now, I understand the sentiment all right.

I can just picture this supreme being up there saying to whomever it is He speaks to, “Hey, let’s give him 1000 volts through the floor – see if he can take that ! “.

A while before Andrew’s surgery, we were struggling with several issues. Like everyone else, our asset values had plummeted and we were now looking at decreased worth across the board. I had been out of work for several months in the preceding year. My Florida property, in addition to diminished value, took a hit from the lack of tourists (and from Kissimmee allowing a condo to be erected on every square inch of undeveloped land). And then …..

Like an idiot, I said to myself “well, at least it can’t get any worse”……. Which of course meant that it could and would and  it  did

First we find there are issues with the condo in Florida (which we rent out short term – like a hotel – through a management company)….guess it wasn’t enough to have it empty a good deal of the time, "let’s just get rid of all tourism in Orlando. There, now the place is completely expense.". Two points for the supreme being …”Bwahaha, let’s see how they deal with this !!!”. OK, I am a big boy and I can weather this even after a quarter of the previous year with no pay. It might be tight but …..

“at least it can’t get any worse……. And I have my health and a healthy family….”

“Really ?, well we will just see about that !” says the supreme being. “Let’s take one of the kid’s for a little stay in the hospital. Bwahaha……and let’s make it the one that can’t defend himself … hahahahaha…..HAHAHAHAHAH”.

Well, we all know where that went, don’t we ?

He sat up there for two months with the old juice-o-meter and just kept the shocks coming …… “let’s try 1500 volts – Intubate Andrew and see what they do”…..

“Wow, they almost handled that…I know, let’s have Andrew’s kidneys fail…That’ll get them …..HARHARHAR !!!”.

I think it was in the second week when I started to think to myself “What kind of God would take this helpless child and basically torture him ? “

“Crank it up to 2000 volts !! – that will teach him to question me !”

After every setback, I would think “well, at least it can’t get any worse…….”

And then came the day when He basically drained the Northeast Powergrid into my spine by taking Andrew from us.

And I thought “well, at least it can’t get any worse…….”

And He thought “let me show mercy … I think I’ve given him the maximum voltage – I’ll leave the voltage alone, maybe even turn it back a little – BUT I’LL LEAVE IT ON FOR DAYS !!!!!!!”

“BWA Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha Ha !!!!!”

"Dear God, I'm back" plus three days

So here I sit, another three days has passed. We decided to move from our current house back into the house we own next door where all of our kids were born. The younger two barely remember, the oldest remembers all and who knows what Andrew would have remembered.


Regardless we fit now since there are only four of us at home.

Shortly after Andrew passed, we realized that the current house was full of memories (of course) but it was also full of reminders. We will never be free of the memories from the current house, nor do we want to be, but we dislike the reminders. AJ has to sleep in the same room he once shared with Andrew, still filled with Andrew’s belongings because they can’t (yet) be moved, but without Andrew. Annie gets to sleep by the wall that used to be permeated with Andrew’s vocalizations, now loudly silent. And we can barely walk into the den where Andrew spent so much of his time, nor look at the placement of items there only to accommodate Andrew.

The other house has memories too but none of the reminders, just the memories –and albeit time or reality that makes it so, they are all good.

However, the thoughts of moving has taken its toll even though we are committed to doing it. We have so much stuff to move – funny, I used to care about belongings and now the house could blow up and I would care less if family and photographs were safe. Annie and AJ are looking forward to it, the wife and I shudder at the thought.

Then again, maybe we will finally go through all the boxes in the attic marked “to go through” and I strongly suspect that “to go through” will soon translate to “to the dumpster”. Speaking of shedding belongings, have you ever tried to give away something that everyone wanted as long as they could avoid actually taking it ? More on that later… I guess I will need the large dumpster ……

So this now is the flavor of this blog (hope no-one is disappointed)…day to day life as it is after Andrew, interspersed with thoughts and stories of Andrew and random thoughts like this one:

I think I am now certifiably crazy … Since Andrews passing and the events and changes afterwards, I can no longer say I believe in a supreme being (God) but yet I still have faith that these events and changes are a part of “a plan” - so basically I no longer believe in God but I have faith that the events are a part of the plan that the God I no longer believe in has in place for me (us).

Rationalized Insanity …………………..

Dear God, I'm back

I last posted on the 13th of November. At that time, I thought that I couldn't do the blog anymore, that it was too painful to remember the things I was remembering and that I needed to move past the pain. I ended with an account of Andrew’s last night. I somehow thought that doing so would put all of it in a neat little package to be packed away, be forgotten about, and life such as it were would resume.

What fools we humans can be.

And so I am back. I thought that I no longer needed the "therapy" it was providing me by giving me an outlet for my grief - and to a degree I was correct because I have come to terms with my grief. I've realized how I will react to things pertaining to Andrew and more importantly, that those reactions are never going to change - that I will always choke up when speaking of him, that I will always tear up when picturing him in my mind's eye.

So why am I back ?

I want to scream as loudly as I can that at 5:21 a.m. on September 26, 2009, my life fell apart. The life I had known for 56 years - every aspect of it, everything I held near and dear, every memory good or bad, every  fiber of my being, everything that defined my life - changed.

I knew at the moment Andrew passed that "my life had changed forever". My son had died, he would never be back and my life would never be the same for that but I had no idea what else could and was about to happen ....... That the very foundation of my existence was about to change forever and irrevocably.

The end - it is time to stop

This is my stopping point, I (dad) can’t do this anymore. It is far too painful to remember the things I remember and I need to move past the pain. I conclude this blog with an account of Andrew’s last night and a little from the days that followed, done way back when it was therapeutic for me to write it.


I ask and invite my immediate and extended family, my friends and acquaintances, and all the people who were touched by Andrew to email me at brian.e.shaw@sbcglobal.net and I will add those entries to the blog as I recieve them.

Before I end this, I need to acknowledge three seemingly little things that helped me and wll remain with me .... a beautiful comment from a close and life-long friend, a thought to get me through the day(s) from a co-worker and friend, and a saying from a follower, lifted from her blog, that will always be with me

=========================================

(From Fran on Facebook)

"Yesterday I was witness to the most beautiful show of familial love on earth. Three siblings honoring their brother at his funeral with loving words far beyond their young years. This service will forever remain with me, not as something sad, but as.a wonderful tribute to a great life. Andrew, Thank You for allowing me to know you.
Rest in Peace.
Until we meet again.
'Auntie' Fran"

=========================================

(From Robin at work, in reference to my “one foot in front of the other” answer )

"Everyday will get better and you will find your feet will work better and faster each day as well.

Memories are a great gift (that) you get to keep forever"

=========================================

(From Liz Saling’s blog)

"Even God had some Autistic moments, which is why the planets all spin."

=========================================

Brian


September 25

September 25 dawned bright and sunny. Dad had spent the night at the hospital and wasn’t going to work because of the CT Scan that was scheduled. In the morning, dad spoke to (someone) and they discussed how even though there were relatively small issues that had not improved, they also had not worsened and overall, I seemed to be improving.

Mom came in around 8:00 (just as I was leaving for the CT Scan). At 7:30 or so, the dialysis had been stopped, as had been scheduled, to change circuit and to allow for me to go for the CT Scan. Just before 8:00 they took me down and almost as quickly as I had left, I was back !. Mom and dad were curious and wondered aloud why it had been so quick. I could tell they suspected there was something wrong but they were so pleased that I seemed to be improving that they pushed those thoughts aside. The PICU Dr’s came for rounds a little while later and they decided that the restart of dialysis should be postponed to let my blood pressure stabilize since I was close to the limit for fluid withdrawal anyway. There was also discussion about my overall condition and how I seemed to be on an upswing. The GI Dr. was there (in rounds) and dad brought up the jaundice to her. She said she was sure that there was no liver damage – nobody agreed with her but they didn’t really discuss it beyond that.

A short time later, a Dr came in to give mom and dad the results of the CT Scan:

• Evidence of old ischemia (but can’t tell how old)
• Spleen and kidneys hard to visualize due to fluid
• Everything else looks fine

BUT, When mom and dad expressed surprise that he was still there after being there all night, he made a remark that they don’t want to see him because if they do, things aren’t good. (“when you see me, that means trouble”)

A little later, an EEG was done but mom and dad never got either explanation for it or the results. They assumed that it was the EEG nuero had been trying to have done for the past two-plus weeks. Things were “normal” after that – mom and dad had coffee and dad worked. Very suddenly, around 10:00 or so, my MAP (mean arterial pressure) started to dip - not a significant amount – and it came back up, but not quite to the previous level…..Then, near 11:00 my MAP dropped to 40 and hung there. My MAP continued to fluctuate and even decrease more so the nurse started me (again) on Epinephrine and dopamine. Someone mentioned during this that there was a third Blood Pressure medicine that could be used if necessary but there was no medication to use after that. Slowly, my MAP recovered but again, not quite to where it was before. Again, my MAP took a dip and from that point on, just hovered in he 46 – 70 range. I remember dad noticing that for the first time, the Dr’s were noticeably scrutinizing the systolic and diastolic pressures instead of just the MAP. Dad caught a Dr. and asked her the obvious question and she just said “this a big step backwards”.

Pediatric Surgery came in to change my belly dressing and didn’t seem any more than mildly concerned. They told dad the wound was same as had been. Dad noted my weight at 116.4 lbs – just over 6 lbs heavier than my “dry weight” ! Another good sign !

Dad has noticed through the day (and actually during the night last night) that I am difficult to suction…seems to be a lot of accumulated phlegm in the back of my mouth. And I seem to him to be having a harder time breathing - not significant so, just enough to mention. And …

Cool – they are hanging FFP (fresh Frozen Plasma) to give me a “booster”. Thatmeans they will start the dialysis again soon.

Sometime in here, a Dr. came in and brought up to mom that she had mentioned a negative experience when I was born and wondered how they had handled it. Then the conversation de-evolved to a general “bad outcome” discussion. Still mom and dad were so wrapped up in things that they didn’t realize what was happening. Early in the afternoon, an EKG was done and without explanation as to why. The technician said that things “looked OK” and disappeared. Shortly after that, Respiratory came in to set up a third CPAP trial to see if I could be extubated. Hurray ! Steve was the respiratory therapist's name. He and the nurse joked back and forth for a while and when I started to “gurgle” again, the nurse suctioned me. Dad heard the nurse say something to Steve along the lines of “look at this” and showed him the suction tube which was reddish tinted. Dad noted this because he had never seen the tinting before. Steve left, the day nurse went to do the shift change things and my evening nurse (one of my favorites) came on. This nurse too noted the difficulty suctioning me and the tint to the sputum. Dad asked her about it and she, a little evasively, said it wasn’t abnormal for the amount of time I had been on the ventilator and that she had even seen worse. 

The Attending came in when she came on duty and did her assessment and she seemed concerned that she heard "heart sounds". The day nurse who was still transitioning to the evening nurse, confirmed that the Attending had in fact heard something. Another Dr (whom I had never seen before) also confirmed the sound. Dad asked about it and was told it was not a concern – it sounded like fluid shifting as my heart beat. It didn’t dawn on Dad to ask why there was “suddenly” fluid around my heart or why three medical professionals had listened intently to "nothing".

Things more or less stayed stable until ….

Suddenly, around 9:30 p.m., my heart rate dropped to 84 from a steady mid-130’s. It came back up but hovered, fluctuating in the 100 – 131 range. This happened repeatedly over the next few hours and everyone seems to be getting concerned. Then, around midnight, a chest xray was done and ……..

September 26

The Attending came in and told dad that the xray “was solid white”. Dad, even though he was fairly sure what that meant, asked her what it indicated. She just said that my lungs were completely filled with fluid and said that I was getting less than 40% Oxygen, even on a ventilator setting of 100% oxygen. That dialysis is going to be restarted to pull off fluid but there was a concern that my blood pressure might not tolerate it...and if it doesn’t, there is nothing more that can be done !!!.

What !! ??

It took three tries to get the damned dialysis machine to prime. Dad remembers thinking two things –

“Why is it taking so many tries to get this going and why wasn’t it started on "even" (input = output) in the morning when he wanted it started”.

Finally the machine primed but as soon as it was connected to me, my MAP dropped to 29. The Attending ordered the “blood returned” - set the machine to return any blood taken from me. None had been but doing a "return" was necessary to preserve the machine setup and not have to reload it if it is used again.

But the dialysis had to be shut off before the return cycle could even complete because my blood pressure wasn't tolerating it.

At 1:30 a.m., the Attending told dad that there was nothing more that could be done and that I would not make it through the night......

I won’t detail those private moments I spent with my family after that except to say that dad made several calls and my loved ones all came to be with me.

Near 5:10 a.m., one of the IV pumps “failed” and dad asked the nurse and Attending to start shutting down the medicine pumps. The pump that had “failed” was the epinephrine that was keeping me going this long . It was not reset and after a long nite, I died at 5:21 a.m..

And so, on this beautiful Saturday morning, I left my family and this earth and returned to my God.

Dad asked the hospital to leave me in my bed until my Aunt could get there from New York and see me before I went “downstairs”.

After the long night, all dad could manage to do was post on twitter “My special boy Andrew passed away this morning at 5:21. Thank you all for your thoughts and prayers during our difficult times.”

Later September 26

Dad posted to Facebook and Twitter

"Andrew Elliott Montague Shaw July 3, 1991 - September 26, 2009
We are in unimaginable pain at the lose of Andrew but we thank God for the time we had with this remarkable child and ask that our friends and family offer prayers of thanks for his short time on this earth"

October 1

Dad posted to Facebook and Twitter


"Yesterday a beautiful child was laid to rest in a beautiful service surrounded by those who loved him and whose lives he touched. God bless everyone who shared our grief in Andrew's passing."
 
November 13, 2009
 
Andrew has been gone now for eight weeks now. 
 
Life is returning to the routine but things will never again be norrmal.


It is not easier, time is not healing this wound. The pain is a constantly there liske a club over my head, ready to strike at any time and for no particular reason - a song, an odor, a snippet of a conversation, a glimpse of an object or person.

Some things are fading from memory, and with that comes more pain because all we have are the memories.... and yet, I can barely remember how Andrew looked on July 26th but I vividly remember - in fact I can't forget - how he looked so bloated and barely resembling himself that last night in the hospital.
 
This is how my life, as it pertains to Andrew, will be until I die. I pray that my faith is true - that when we die we see those who have departed before us - and that I will see Andrew, spoon in hand and GameBoy pressed to his ear, walking shakily toward me, every bit retarded and disabled as he was in life for this is the boy I lost and the one I so desperately miss.

Living with Andrew (the stories continue)

We all have friends and different “types” of friends, right ?

Some of us have friends that we really don’t want anyone to know we are friendly with – like old friends from school that haven’t turned out so notable.

Some of us have friends that are only friends in the place where they belong – like work friends

And a few of us have friends no one else can see……like those people that talk to “themselves”.

Me ? Well, I had a whole bunch of friends that only I could see ! Really. As Allison referred to them in my eulogy, my “famed invisible friends”. OK, so you are probably thinking right about now, “sure, I’ll bet you had a lot of invisible friends”, and to tell the truth, I did. But those are not the friends to whom we refer.

My invisible friends, the famed ones, the ones I “listened” to, they lived in the upper corner of the den. Sometimes they came out into the other rooms but mostly they stayed in the den and always, they were in the corner of the room near the ceiling in which ever corner was over my left shoulder.

These were the friends I “talked” to and they only talked if I had my spoon. I would vocalize a sound and cock an ear to that corner where I knew they waited. A few seconds later they would start to respond and it was usually a lengthy response that required me to shake my spoon and strain my “good” ear toward that corner the whole time. Finally, they would stop talking but I had to look and see – just to make sure they really had stopped – so I would look at them from the corner of my eyes and watch with suspicion and trepidation, straining to hear any sound they might make and see any movement. And then, satisfied that our exchange had ended, I would return to what I had been doing.

Everyone I knew also knew my friends and will miss them. Mom and dad sometimes walk quietly into the den and look at their corner hoping to see them or hear them, but alas, they left the house when I did in late July (they usually came with me anyway). They came to the hospital with me. They were there in the hospital all that time with me. I never talked to them in the hospital but only because I couldn’t hold my spoon and with the ventilator, I couldn’t utter that starting vocalization, but I knew they were there, sometimes I looked right through whoever was there to watch my invisible friends … I could see them as plain as day.

And they were with me, comforting me, when I left this earth.

Living with Andrew (the stories begin)

I was an interesting personality – no doubt about it. You wouldn’t think so to look at me, several times I could be found sitting in the den where I would “play” video games on one of the many video game systems I had or “watch” a favorite movie. As I said earlier, it was all about the sound. I had a unique ability to rewind a VCR Tape to the same spot repeatedly and without even looking…and I do mean the same spot - Not the same scene or the same sentence or even the same word. I would rewind it to exactly the same syllable of dialogue or note of a song. And I would do this over and over until I tired of the 5 or 6 minute segment involved (which sometimes took days) and move on to the next. It usually took months to watch a movie in its entirety.


Because I had hearing loss, I would press my ear to the speaker and listen and smile - so much so that I wore spots in the TV cabinet where I pressed my ear to the speaker - And then I would rewind the tape and do it again – so many times that I wore the finishoff the “rewind” button.

With video games, I did essentially the same thing, going back to the same spot over and over. It didn’t matter what was actually going on in the game – I don’t think I would have understood anyway – only that the sound was repeated. Yet, I somehow managed to get into parts of the game that no one else ever could and I even finished a few games.

By the way, in my world there was a place for everything and everything had to be in its place. This applied not only to “belongings” like my videos and games, but also where my dishes were set, how my coat was hung up, even if the piano keyboard cover was closed. And if you didn’t adhere to my “rules”, you were in for it – if it was a minor infraction, I would simply pinch the offending item between my thumb and index finger and hand it back to you, if it was a significant offense I would glare at you over the rim of my glasses until you complied and if, heaven forbid, it was a major infraction I would frown at you while I pounded my chest. …

Vacationing with Andrew

Most of our vacations were to Florida…As I said before, to be a part of my family, you must be a Disney fanatic so even though we traveled to other spots like Lake George, we usually wound up at Disney.

The real reason for this was how difficult it was to travel with me (see previous posting ….). Even after all of that was done, there were still very real issues with hotel living. Bathing, eating, sleeping were all issues to name a few. It could be so difficult that it was usually easier to just stay home.

But Disney is (for most part) a paradise for a handicapped person. Long before it was politically correct, Disney went to the max to accommodate the handicapped, at the resorts/hotels, in the transportation and in the parks. They even accommodate special diets. Regarding the parks, they got so PC that eventually it seemed that you couldn’t enter a park without a wheelchair and for a short time they actually went to the other extreme and cut back “special access, etc.” to near nothing.

In the meanwhile, Universal and the other parks had modified their handicapped policy to be entirely logical (to anyone with a true handicap), basically “if you are handicapped, either it is obvious (like a leg cast), you have your own wheelchair (and won’t have to rent one), or you can readily provide proof (because you wouldn’t travel without it)”. If you met any of the three criteria, they would issue a “handicapped pass” that indicated that you had a confirmed issue requiring “special access, etc.”. If you didn’t have any of the three, you didn’t get the pass. No longer was the fact that you were in a wheelchair sufficient to get the “special access, etc.”. In my case, the true need was never in question.

Even though the resorts are ultra-friendly to the handicapped, there are still some needs that are best addressed in a “no place like home” setting…things I have already mentioned like the tent, diaper disposal, keeping my restrictive foods nearby and of course, my very loud growling. Then mom had to worry that even with safety locks on the doors, I might still get out and find myself two or more floors up on a balcony, so …..

Eventually mom and dad bought a condo near Disney where they could easily arrange things as I needed them to be, making it even easier to vacation there. Here, they could secure my tent and all of the doors.. and they could leave things at the condo rather than having to take them back and forth in the luggage on each trip. But there were still moments …. Like one night when I just did not want to go to sleep. Dad had fallen asleep (can you say “snore” ?) but mom couldn’t because I would “walk” the tent over to the TV and mom would get up and put it (and me) back. It was a fun game (at least I thought so) and we did this several times. Finally, mom decide it was time to sleep and obviously the only way I would was if I was in bed, comfortably between mom and dad so she got me out of my tent and tried to lift me onto the bed. I didn’t really like the idea and squirmed, making it difficult for mom to hold onto me and finally, she thought to herself “it’s a soft bed” and let me fall backwards (from the waist). Only problem was that dad had moved in his sleep and was now directly below me. I fell dead center on his face, the back of my head all but breaking his nose ……….

I enjoyed several trips to Disney and have more memories than I can really count. We would almost always go to the parks when we were in Florida and mom would always decide what rides I could go on. She would mentally build a “no way” list and that list would somehow be telepathically transmitted to dad who would immediately start to contrive ways to get me on those rides. I can’t think of any ride that I didn’t get on eventually (it may have taken two or three trips before I finally got to ride them, but I did). My favorites:

• Splash Mountain
• Big Thunder Mountain Railroad
• Rock 'n' Roller Coaster
• Tower of Terror

( I finally managed Tower of Terror on our last trip, after years of dad telling mom it was safe …..)

I remember that, almost invariably, if I was where the characters were, they would all gravitate to me… must have been my winning smile.

 They would all just gather around me for some reason and stay there longer than they really should have. Even the time I chased one down because they didn’t see me ! We we’re walking into MGM (It was Disney / MGM Studios then) and Rafiki from the Lion King had just been outside the gate and was heading back into the park. My Aunt Maureen called to him but he didn’t hear (or chose not too) so she decided that if she could push me up behind him and dad could take a picture – it would look like I had been talking to him (you would be amazed what these two- Aunt Maureen and dad – can cook up if let them) so off she went, pushing me and trying to get Rafiki to turn for a second or to get in front of him. Well, what did happen was that the front wheel of my chair ran over the front of Rafiki’s enormous foot and he stopped and looked down to see what it was. Instantly, I captured him with that now-famous smile and for the next five minutes we “talked” … you know, now that I think of it, maybe that is why the characters liked me, like them I couldn’t talk and I obviously thought they were real and took such delight to just see tham and touch them …. Who knows? So, let’s just say the plan worked though not as expected and I had lots of pictures taken of just me and Rafiki.

Then there was the time outside of Animal Kingdom when Tweedle-dee and Tweedle-dum were appearing. Even though I really didn’t know who they were, dad was determined to get me over to see hem. Just before I got there, Annie ran up to one of them and, as I remember, was startled and “screamed” when he turned around and looked at her. That was all it took… - forget me, both Tweedle-dee and Tweedle-dum began to “chase” Annie all around the front of Animal Kingdom for about five minutes.


And the time at “Pizza Planet” when Buzz Lightyear from Toy Story came over to me. After a period of time, he tried to leave but I grabbed his finger and wouldn’t let go until I was ready.

Traveling with Andrew

Early on, mom and dad discovered that I loved Disney. It was really accidental, even though I watched several Disney movies that they had bought for me over time, they really didn’t realize that something about Disney captured my attention.


At some point in the mid-nineties, they were planning a trip to Walt Disney World (WDW) and in anticipation, they began to occasionally watch a vacation planning video that was a take-off of “Be our guest” from “Beauty and the Beast”. They quickly realized that I loved this tape …. but there was a catch …

I somehow intuitively knew if they were just playing the tape randomly or if they were actually planning a WDW trip. If they were in process of planning a trip, I would watch the video, smiling and laughing all the way through and looking at mom and dad (or anyone else in the room) as if to say “what are we waiting for” …. But ….if it was a random playback, that was not good . I had to let them know that and did it by frowning while I pushed it away – or if it was already playing, by rejecting it from the VCR, placing it back in it’s cover and setting it precisely where it went on the shelf.

By the way, I knew the way to the airport and it was not nice to drive toward Bradley Int’l and then not go there !

Whenever we did travel, it was quite a production: First, I slept in an enclosed hospital bed at home and that could not travel with us nor was there anything like it available at a hotel. Dad realized that a one-man enclosed tent could serve the same purpose – to keep me from wandering – and bought one to travel with. Good idea father but it, like most things, came with conditions attached. The tent worked fine, I was contained and couldn’t wander but the floor was hard so we always had to have extra blankets and pillows to put under it. And then, I quickly learned that if I held on tight and bounced on my butt, I could “walk” it across the room to whatever I was after – usually the video game system that had also been bought for travel. And of course, dad used to wonder what housekeeping thought when they came to clean the room and here was this tent in the middle of the floor ! But I am getting ahead of myself..

Let’s start with packing ….. as anyone who knew me is aware, I was in diapers all of my life. Now, as I grew I progressed from baby diapers to “adult“ type diapers which are not really commonly available (at least not the ones I wore) so any trip anywhere inherently included one suitcase packed with diapers. At first, dad tried to stuff them loosely around other items in the other suitcases but that proved unsuccessful. So we always traveled with one suitcase filled with nothing but packaged diapers … and then of course I had my GameBoy(s) which required batteries (and a surprising number of them – a GameBoy uses a lot of batteries when it runs 24x7) so we also traveled with bulk-packs of batteries, and of course we had to have the traveling video game system, my favorite sleeping toy (A lilo doll, woody or Buzz from toy Story, Barney, …. Etc.). my special foods , and of course – several mixing spoons. Now, the next issue is how many clothes I wore – at least three changes a day and two at night so there was yet another LARGE suitcase devoted just to my clothes and requisite medications and such, and the special dishes that were the ONLY ones I would eat from.

OK, so now we are packed ! Next was the trip to the Airport which usually started with an hour of dad swearing at trying to get all the luggage into the car and still leave room for everyone. Once at the airport, there was another hour of swearing while dad transported the several suitcases. We would eventually get to security where the TSA would insist that I walk through the metal detector alone !!. Can I tell you how successful that was ?. Eventually, mom would convince them to let her walk me through and send my chair through x-ray, but every so often we would get an over-zealous “guard” who insisted on wanding me or worse yet, patting me down. The latter was always fun as they of course had to check my diaper …… lol.

OK, so now we are through security, albeit with strange looks because I had my spoon and got very annoyed when my GameBoy was taken and sent through x-ray, and we are off to the boarding gate. Dad would now try to rearrange our seats. Even though he always had a note added to our reservations when he made them that we HAD to sit facing a bulkhead because I would LOUDLY vocalize and that the flight attendants needed to be aware of my vocalizations, he still had to confirm he seats and change them if they were not appropriate. We always boarded early since my chair didn’t fit down the aisle and I had to be “walked” .

OK, so now we are on the plane. Once on the plane, I would settle down for the most part but for some reason even I don’t know, I was compelled to “growl” – loudly (and I DO mean loud) and very possibly for the entire trip. I remember one flight from Tampa to Hartford where I decided to growl as soon as we were on board. When the other passengers started to board, mom and dad tried to get me to stop – to redirect my attention – but that didn’t work, I simply thought it was a game and growled louder and louder. This continued for the entire trip and I do not exaggerate here, it was literally the entire trip !. When we deplaned in Hartford, the other passengers looked like they were going to lynch us….if pitchforks and torches were allowed in the airport, it would have been like the scene from “Frankenstein”.

I also I liked to play with the seatbelt buckle and if left alone, I would unbuckle myself and start wandering – so mom or dad would have to hold my seatbelt the entire trip. And of course, I would have to relieve myself also, which was guaranteed to turn a few heads and proved to be a contortionist nightmare as plane bathrooms were not made for changing diapers.

OK, so now we have landed. We have made it through the angry mo who had listened to my growling and possible endured my odorous announcement. Once there, we needed to get our luggage and a rented car Another hour of swearing and need I say more ?

Finally, our final detination. Relax, right ?... wrong !... Now we spend an hour setting up the tent, unpacking the diapers, hooking up the video game system, and securing the door(s) just in case I get out of my tent and wander. ….

A retraction of sorts

A retraction of sorts, contrary to what I (dad) wrote yesterday, I am going to continue the blog as it was … in Andrew’s voice. There are so many things that scoped Andrew’s middle years that it is difficult to present them as a point-in-time occurrence, however, I am going to attempt to stay on a chronological order.

Has it really been six weeks . ?

A while back, I (dad) said that doing this blog was providing me with therapeutic value. While that remains true, I think I may now be crossing the line from therapeutic to prolonging the agony. I find that my memories from Andrew’s first year or two are quite clear as, of course, are tose of the recent past is but the order of the events in between escape me… in some instances, even the memory of the event escapes me unless prompted.


So I change my approach to this blog, I will continue to write updates to the blog but I will likely update it less frequently ... and the updates will be by me – no longer speaking as Andrew.

I am not going to attempt to adhere to a chronological format but rather, speak of things as they occur to me. There are so many memories of my remarkable son and trying to sort them into a chronological order negates the pleasure of remembering.

So .....  tomorrow I start a random brain-dump of the pieces of Andrew’s life that made him the special child that he was. I will continue to write updates to the blog , likely less frequently and not necessarily in chronological order .

I ask and invite my immediate and extended family, my friends and aquaintances, and all the people who were touched by Andrew to comment on and add entries to this blog

Brian

What does A.J. stand for ?

In late summer of 1994, Along came A.J.. I was happy to have a younger brother but I also meant substantial change in our family. Even though we were 2 girls and 2 boys, we still needed at least one more bedroom, both because of me (let’s just say my sleeping patterns didn’t match everyone else’s) and because there were enough years between Allison and Annie that they each really needed their own rooms. There were enough biological years between A.J. and I to warrant separate rooms also but in developmental years, I was still an infant so it was ok to share for a while. And then there was the car issue. Mom had three of us in car seats and we couldn’t go anywhere as a family in one car, so it was off to the car lot to get a mini-van and say goodbye to dad’s Honda that he liked so much ….


Now, since I told you all about the turmoil around Annie’s Name, it is only fair that I tell you of how A.J. became A.J.. In keeping with the now-tradition of us all being named after other family members, mom and dad decided to name A.J. Alec John. Alec was a derivative of Alexander for (the middle name of) dad’s grandfather and uncle, and John was for mom’s brother-in-law. They had decided early in the pregnancy that this was to be A.J.’s name and quite naturally they started referring to him as Alec John. Like me – I am “Andrew” -- never “Andy”, A.J. would be “Alec John” -- never just “Alec” ) but that turned out to be quite a mouthful> firly quick, he became A.J. (and eventually just J.)

All that sounds quite reasonable and understandable but when he was born and the hospital asked mom and dad what the name would be, they looked at each other and decided on the spot that “Alec John” was too much of a mouthful - and it just didn’t fit. They quickly came up with “Addison”, after a favorite person on dad’s side of he family and “Montague” because it was a family name and sounded nice with Addison. But they still called him either “A.J.” ! Poor guy, he has and will go thru life being called by initials that have nothing to do with his real name and being asked to explain it.

So A.J. was born in March 1995 and came home to the rest of us. By this time I was 4, out of Birth-to-Three and attending ACES. On a fairly regular basis mom would get a note from ACES (as she had from Birth-to-Three) that Chicken-pox was making the rounds in my school and to be on the lookout. This had happened so many times. Mom would watch diligently since neither she or Allison had ever had Chicken-pox…and nothing would happen so when yet another note came home three weeks after A.J. was born, it was not tken as much to be concerned about.

Oops… big mistake ……

Two days later the first pox appeared on my face…

It wasn’t too bad for me, I had a fair number of pox but I never really scratched hem or became too ill… but then,….

all three girls got the Chiken-pox. Annie, Allison and mom, all at once, all fairly bad (mom was the worse), all layed outon the sofa feeling ill and looking to dad to take care of them.

That was one long week but it finally ended and they all started to feel better ….but then ….

A.J. got them. Try to picture a 4 week old baby literally covered head to toe with Chicken-pox. Not a pretty sight….

Another addition to the family

In September of 1993, my younger sis arrived. And it was one heck of a change for me I can tell you !.


Here was another baby and she looked like she was going to get all my attention. For starters, all she did was cry….non-stop, every waking moment, for 6 months straight – but yet she was so cute it was hard to get angry. This was Annie, my forever “older” younger sister.

My true older sister Allison, or a-la-la-la as I called her, would always be my special sister – She was my only sibling to know what life had been like before I came along. She lived through all attention suddenly going to me when I was born and having to share mom and dad with me without ay time to acclimate….. And then she had to adjust to almost everything being dictated by my needs. I’ve wondered sometimes how she managed, but she did, and she was always there for me. We had a connection that no one else will ever know or be able to describe - she was my best friend, my playmate, my protector – and she always will be.

Allison had been named afer family members, a “tradition” inadvertently started by dad’s mom when she named him after family. In Allison’s case, iher name was a derivative of dad’s grandmother and mom’s grandmothers maiden name. When I came along, I was named after a favored cousin, mom’s maiden name, Dad’s middle name (and his mom’s maiden name. As I am sure you noticed, I have two middle names. As soon as mom and dad learned that Annie was on her way, they started to – let’s say “disagree” – about her name. Dad wanted Annie – it was a favorite aunt as well as his mom’s middle birth name… but mom didn’t like it….all she could think of was the comic strip character. Mom would say “Let’s name her Ann and call her Annie” to which dad would say “Let’s name her Annie and call her Annie” . Then mom would say the same thing with another soudalike / spellalike name and dad would respond with the same “Let’s name her Annie and call her Annie”. Then mom would say “let’s give Annie as her middle name and call her Annie” and dad wold say “Let’s name her Annie as the first name and call her Annie, but we could use Annie as the middle name also ….’Annie Annie’… and so it went.. By the way, dad won …..

So Annie, otherwise known as “Eeeeee…..”, was pure competition when she came along. All of a sudden mom had a real newborn to watch after as well as her perpetually 24 month-old newborn (me). It seemed she was always running between us and I don’t know how she did it. My medical issues weren’t getting any easier and I still didn’t crawl or walk, I could just barely sit up. And then I had to be fed … a bit better by now but still an issue. I ate Cherios (did you know they are good because of the hole in the middle – less danger of choking), yogurt and applesauce. That was pretty much it. Everything else either had a texture I disliked, caused me to vomit or I couldn’t eat it since I hadn’t quite mastered chewing yet.

So I was happy, even though I was in that dreaded position of the middle child… and then…..

The Deed Is Done

Over the weekend, mom and dad came to see me. The grass is starting to grow over my grave now – by spring it won’t look “fresh” any more and maybe then it will be easier for them to see at it. Dad dreamed about me last night – a first. He doesn’t remember the details (unusual because he always remembers his dreams and the details), he just remembers sensing my presence and an “image” from the hospital. I think the “image” was a left-over from talking to mom just before bed. She was telling dad that she wakes up every morning with the image of that last night in the hospital. They are both doing pretty good and I am glad they are starting to “heal” but I still worry about my sibs … I’ll have to keep an eye on them.

Mom and dad finished what no parent should ever have to do, they sorted through and packed away most of my belongings….

......... there are still things to go through and things to take care of … my (enclosed hospital) bed, my newer Convaid chair, other things like that which can’t just “be put away” or moved….. and my “every day” Convaid chair that mom still can’t bring herself to take out of her car. These will take time and are mostly out of their control ….

By Age Three

Those first three years was an endless stream of discoveries so to speak. As I said, mom and dad realized that while I was special I was also different, as the many visits to Dr’s and the hospital became a growing list of “disabilities” .

By age three, it had been determined that I had several issues on board:

Sight (strabismus and near-sighted)
Hearing (recurrent ear infections, hearing loss)
Speaking (I didn’t)
Ambulating (I couldn’t)
Developmental Delays (Not likely to progress beyond 24 months)
Gastro-intestinal (Small stomach, slow motility)
Gastro-intestinal (Severe reflux – projectile vomiting)
Food Allergies (Soy, Dairy)
Medical Allergies (most antibiotics)
Substance Allergies (latex)
Texture sensitivity (Grass, Concrete, Carpeting, …..)
Oral Texture sensitivity
Seizures (Suspected)
Asperger Syndrome (Confirmed)

And

Down Syndrome

Just to name a few

But I had settled in and settled down….Mom’s life had already been changed irreversibly. She had stopped working when I was a three month in utero and hadn’t returned. It just made no sense since she had to be readily available to attend to my needs. Guess her thought at the hospital that life would never be the same had been accurate but somehow I don’t think she would have had it any other way….

Barney Moves In

Later on, after I stabilized a bit and could almost sit up, I became familiar with TV never really watched TV when I was young but I did watch the same VCR tapes (remember VCR Tapes ?) over and over. One day mom was looking for something on TV and she came across “Barney and friends”. I seemed to enjoy it so she bought a VCR tape of a few shows and thus began an almost endless parade of “Barney Video Tapes, Barney Audio Tapes, Barney Songs, Barney Concerts, Barney Dolls, Barney Toys. It was purple and green everywhere !


I eventually got up to about 15 Barney Videos that were played repeatedly and The whole family knew all of the characters; Barney, Baby Bop, the “real” kids.

I simply LOVED Barney and his “Let’s be friends”. Anyone who came to our house had to know the theme song. Barney was the first of my many video obsessions and he by far lasted the longest. Dad put my favorite songs from my other video obsessions on the right. Enjoy them when you can .....

"Mom ran over the dog" ...

So when I was born, dad was working for a company named Keane, Inc. – a consulting firm (then) based in Boston. On news of my birth and the complications, Keane Corporate told the branch to keep dad “on the bench” (unassigned) until I came home from NBSCU (Newborn Special Care Unit). Dad was only required to physically report into the office every day and then he could leave so he would be (and always was) available if I needed him. After I came home from NBSCU, dad went back to work on an assignment at a large insurance company in Bloomfield that shall remain nameless (CIGNA). I was still in danger of any one of a number of critical issues developing so dad naturally told both Keane and CIGNA that he may have to leave for the day at anytime and with little, if any, notice. A few weeks after dad had settled in at the assignment, he was in a meeting with several higher-ups from both the client and Keane when his cube-mate came (literally) running into the meeting in a panic and told him “your wife is on the phone and almost hysterical. I couldn’t understand anything she said except ‘Andrew’”. Dad immediately left the meeting and ran up the escalator to his desk where everyone was staring at him (Apparently his cube-mate just stood up and yelled “has anyone seen Brian” so everyone within ear-shot the floor was watching to see what was going on).

Dad picked up the phone, expecting the worse.

Mom explained thru tears that she had run over the dog !

SHE HAD RUN OVER THE DOG !

Now dad is standing at his desk, all eyes on him with expectations that he will announce that I have a medical emergency and instead he has to explain that mom ran over the dog!

He asked exactly happened asked dad, trying to look like someone dealing with a medical emergency should look and mom explained through sobs of relief that she had somehow backed over the dog and Ruffles (the dog’s name and no, dad had nothing to do with it !) had become trapped under the car on the grass strip in the center of the driveway. She said the dog seemed to be ok, just trapped, but she couldn’t move the car and she had called the police. Dad struggled to find a way out of the “all eyes on him” scenario. Finally, he said loudly into the phone “Oh God, I’ll be home as soon as I can get there”, hung up, told anyone listening “all I can understand is she can’t move the car and she called the police !” and left.

Everyone of course assumed that I had an emergency and dad managed to get out of a potentially embarrassing situation without lying or having to explain leaving the meeting with the higher-ups over a dog.

The dog was ok and ran around as if nothing had happened as soon as the poice jacked up the car and she got free of the oil pan pinning her to the grass.

There is more to this though. The dog actually did sustain one injury, a tooth somehow became loose. When dad got home, Mom (feeling badly for what had happened) cooked a nice piece of meat for the dog, cut it and fed it to her. At thaqt point, he tooth came out, the dog swallowed it and began to choke so the day ended with dad chasing the dog around the yard and performing he Heimlich on her.

Dad continued to work at that client on and off for the next 18 years but he never told anyone what had really happened that day until just this past spring.

As they say in that commercial, "Ah, the memories".

It took me a long time to even sit up but once I did, I realized that I could “scoot” so rather than even try to stand or walk, I just sat with one leg folded and pulled myself along the floor with my other foot. You could be sitting at the table and you would detect movement in your peripheral vision. That would be me, scooting at top speed (which was remarkably fast) to something that had caught my attention BUT only if the surface was right and I don’t mean slippery or something that might aid or prohibit my sliding, I mean a surface that I liked. I was texture sensitive, not only orally (eaten foods) but touch also, for example, I would burst into tears if I was set down on Grass !.

I also learned to climb and took fondly to “Table spinning”. Any elevated surface would do. I would just climb up there, cross one leg and spin myself silly with the other leg. Nothing stopped me – if there was a lamp on the table of choice, I would just push it off onto he floor. This got so bad that mom put away anything that was not absolutely necessary and dad actually bolted down the lamps !

And I also came with some "strange" benefits …

Dad learned early on that if he needed to throw out a “possibly questionable” item, all he had to do was surround it in the trash can with my diapers! It would be taken, no questions asked !

Life Goes On

So life chugged on in my first years with a routine revolving around eating, Dr’s visits and Birth-to-three (Marty, Rhonda and Ruth) visits. Even though I spent a lot of time with medical issues, the specifics are boring and have thankfully slipped from my memory. Suffice it to say that I had more hospital visits than I care to remember, Emergency room and hospitalizations and specialists visits. I do remember that when we went to a new Doctor or the Emergency Room (which was often), mom and dad would always tell the nurse that they would need several people to take blood for testing (which they did every visit). And the nurse would always respond “OK” with a “you’ve got to be kidding, he’s just a Down Syndrome baby” tone of voice. They had no idea how physically strong I was and how well I hid it. Most blood draws resulted in dad laying across my chest, mom holding my feet and two or three nurses / Doctors holding my arms !


And as I said earlier, I developed projectile vomiting – an enviable trait under the right circumstances if you can do it on demand. Once, mom went to see the Town of Hamden Student Transportation Department to “explain” why sis needed to be picked up at our house instead of the “regular” school bus stop. The regular bus stop was at the end of our street and mom couldn’t either leave me home or take me with her to the corner to wait for the bus with sis. In spite of numerous calls to numerous people and explaining my situation, the town wasn’t being very cooperative. Then, mom went to town hall to explain in person and show me to them so they could see that she wasn’t lying (Hamden’s approach on transportation is to assume that you are lying to get special treatment). During the meeting, and almost as if on command, I projectile vomited on the nice man’s suit just as mom had finished explaining to him that projectile vomiting was one of the issues she dealt with. The bus was at our front door the next day !

Now, this is not to say that Hamden was uncooperative about me – remember this was sis’s bus we were talking about. I hadn’t even entered the school system yet – I was just a baby in a car seat.

All this does bring to mind specific memories. Tomorrow I will start to tell you about them, stories like “When mom ran over the dog ……”

"You've Got A Friend In Me"

In 1995 “Toy Story” came out. We went to see it and immediately became obsessed – those who have seen it know that it is every bit adult subtext as it is a movie for kids and as I am sure was the case everywhere else, certain “catch phrases” became a standard in our house. Depending on the situation and circumstances, you might hear.

• Ages three and up! It's on my box! Ages three and up!
• Were you scared? Tell me honestly
• I have been chosen. Farewell, my friends. I go to a better place.
• This is a perfect time to panic
• I just don't think I can take that kind of rejection!
• You uncultured swine!
• To infinity, and beyond!
• This isn't flying. This is falling with style!
• I am Buzz Lightyear. I come in peace
• The Claw is our master
• Pull my string!
• I don't like confrontations!
• What would you say if I get someone else to watch the sheep for me tonight?

And dad's favorite,

"Well, I'm not really from Mattel, I'm actually from a smaller company that was purchased by Mattel in a leveraged buyout.".

The catch-phrases faded in popularity and were replaced with the theme song title - “You’ve got a Friend” – mostly because I replayed the beginning of the movie endlessly (remember, I said I liked sound .. and the same sound … over and over again).

But, over time and for reasons I still didn’t understand, that phrase became associated with me, my trademark if you will. So much so that when the family was arranging the funeral liturgy, they were asked what phrase came to their minds about me and they all answered in near-perfect unison “You’ve got a Friend in me.”. I myself never really understood why that phrase stuck to me until my younger sis … wow , that sounds strange and seems even stranger. Even at 18 I was still a baby and always looked up to her …. …..

Oh, yeah. I never really understood why the phrase “You’ve got a Friend in me.” became My phrase until my younger sis spoke at my wake and said (in part)

“When asked what phrase came to our minds about Andrew, we all answered with ‘You’ve got a Friend in me.’ Literally, that’s what Andrew was; he was a friend to every face that saw him, for he was never angry or sad, but instead, upbeat and loving. He gave us a gift we could never ask for, and he delivered it with perfection. I can guarantee you that there is no one who disliked Andrew. His ambiance and aura was contagious, lighting up everyone’s faces and day no matter the circumstances …….

…..our brother was unlike the rest. When I say unlike the rest, it’s in a good sense. He was unique because he was a genuine and innocent soul with the heart of a fighter and did, in fact, fight until the very end…….”


And so it is now that I will be remembered by that phrase, and I am OK with that.

I think dad is even planning to put   “You’ve got a Friend in me”  on my grave marker ….


“You’ve got a Friend”

You've got a friend in me

You've got a friend in me

When the road looks rough ahead
And you're miles and miles
From your nice warm bed
Just remember what your old pal said
Boy, you've got a friend in me

You've got a friend in me
You've got a friend in me

You've got a friend in me
You've got troubles, well I've got 'em too
There isn't anything I wouldn't do for you
We stick together and we see it through

You've got a friend in me
You've got a friend in me

Some other folks might be
A little bit smarter than I am
Bigger and stronger too
Maybe
But none of them will ever love you the way I do

It's me and you
And as the years go by
Boys, our friendship will never die
You're gonna see
It's our destiny
You've got a friend in me

You've got a friend in me
You've got a friend in me

The GAMEBOY

As long as I can remember I have had ear infections, I may even hold the record at 13 pairs of ear tubes. With all the infections, it became apparent at a fairly early point that my hearing was diminished. I never quite got to the point of needing a hearing aid but I did have a hard time hearing. If you walked into the den at home, you would likely find me with my ear against the TV speaker so I could “hear” what was going on. And I really liked to hear the same thing over and over again. Way back, mom bought a Gameboy (one of the first ones !) with games for sis. As soon as I saw it, I had to have it …. And I got it … not that one actually, but mom bought one for me. I didn’t have many games (at first) because I didn’t play the games, I just wanted the sound .. and the same sound … over and over again.


Whenever we were going out, I would grab my Gameboy … it was always in precisely the same spot …..and my spoon, and off we went. At first, it was fairly obvious with the older Gameboy that I was listening to a Gameboy and people would politely ask mom what game I was playing or comment on how intently I played the game, but as time went on…. The Gameboy got smaller and cell phones became prolific and smaller, people started to assume I was on a call. I know you are saying to yourself “I’ll just bet they did”…but they really did. These people were absolutely convinced that I was on a cell phone

The SPOON

Ok, time to explain some things. Since my wake, mom and dad have been asked why there was a mixing spoon in my casket and they have realized that there are a lot of people who don’t know of some of my idiosyncrasies, so


The “infamous spoon” – I could never really use a “binky” (pacifier), my tongue was too big for my mouth (a Down Syndrome trai) and a “binky” just kept slipping out so when I wanted something in my mouth, I would chew on my fingers. And I do mean chew….not put my finger in my mouth, but actually chew, and to such a point that I still had calluses, from chewing, on my finger when I passed. One day while mom was cooking dinner, and after having tried everything imaginable to stop me from chewing my finger, mom just pulled my hand from my mouth and handed me the spoon she was using. I ofcourse put it right into my mouth and liked it but more importantly, it had what mom and dad started to refer to as “skake-a-bility”. If I held it just right (still no one else can quite do it), it would shake in a wobbly kind of way that looked like it was floating. I liked the spoon but it really looked funny so mom and dad would try to give me other things to hold but hey never matched he “skake-a-bility” of the spoon so eventually, they just gave in and bought several spoons for me. And guess what ?. What I was doing actually has a name:

Self-stimulation…..

Self stimulation is a key aspect of autistic children (Remember, I had Asberger’s Syndrome also which is a form of Autism). While other children and adults cannot understand why the autistic child does this behavior it is something they are rather obsessive about and seemingly unable to stop. This behavior is also commonly referred to as stimming. Stimming is a repetitive behavior that keeps the child engaged in their own world but serves to stimulate their senses in some form or another. It is often used to help the child regulate themselves in a stressful environment.


Many children with autism have difficulties interpreting sensory information. Whether the world seems to rough, too bright, too loud or any other number of things, it all boils down to their minds not properly coping with the world around them. Stimming is one way that the autistic child can bring back control of their world. These behaviors are the child's way of working out things in their world that don't seem right or to cope with a stressful situation. The positive side to stimming, is it is a calming behavior which help the child to regulate themselves and overcome a situation of stress or upset.

Over time, I became known for my spoon – in fact when I went to the hospital this last time, my spoon and Gameboy (more on he Gameboy in a minute) were in the admission notes and several times mom and dad found out hat one of my Dr’s learned I was there because they saw the familiar name and the mention of the spoon confirmed that it was me……

So I guess the spoon was as much a part of me as your glasses might be to you. Mom and dad always had one with them …they even had to take it through airport security because I had to have it -- and I’ll bet you didn’t know that a mixing spoon is considered a deadly weapon by some of the Bradley Airport security people … So, mom and dad just couldn’t NOT put one with me.

My first years ... continued

While I enjoyed my first few years, I probably caused some distress in the rest of the family and I never acknowledged it. Mom and dad were in a constant state of “heightened sensitivity”. Medically there was constant concern for what would happen next in the medical arena - It seemed that every week a new medical issue would come to the surface. Developmentally, they were either dealing with DMR, dealing with Birth to Three or getting ready for the Board of Education. And generally, because everything had to revolve around me. Think about this, I don’t think mom and dad were every anywhere, together without me there too.


That had to have an impact on sis in the first few years and on all my sibs after that.

My first years

I was an interesting child those first years (actually, I was always interesting). Right from the beginning, I was different even within the confines of my disabilities.

A neighbor of ours had Down Syndrome. Mom and dad always thought that I would grow up to be like him – self sufficient within the constraints of my affliction although delayed - but I had different plans.

In the beginning, mom and dad joined support groups like PATH (Parents Available To Help) and the CDSC (Connecticut Down Syndrome Congress). They enjoyed the company but each time it became apparent that we didn’t quite belong. The other kids would be crawling around, sometimes walking, experimenting, reasonably attentive and cognizant of the other kids (always of course within the constraints of their disabilities) … Their parents would talk about the advances their kids had made and their accomplishments since the last meeting. But mom and dad could never really participate in those discussions because I pretty much stayed the same and even regressed a little. As other kids played, I would sit in my chair, head propped up (because I couldn’t hold it up myself) and kind of stare off into space (and of course I had to be fed every hour). Mom and dad would eventually realize that I was “special” even within the description of the “special needs” of a group and so those groups became a point of depression for them. Slowly, we lost touch with the people in the groups. Slowly, mom and dad stopped talking with other parents – if it wasn’t depressing for them, it was depressing for the person on the other end of the phone…. Parents who just had a Down Syndrome child wanted to hear about the “wonderful” and “all but normal kid down the street”, not me who never progressed and had innumerable health issues. Eventually, we even lost touch with that little girl from NBSCU and her parents.

Thinking back, not all that long before I was born, a Down Syndrome baby would have automatically gone to an “institution” unless the parents fought it. But when I was born, the drive to keep kids like me at home and mainstream us was really just “finding it’s legs” and everything was “rah-rah” for the handicapped and “let’s show everyone how ‘special’ special kids are and how they enrich your lives so everywhere you turned there was an uplifting story about “kid’s like these”. Dad remembers a movie that was on shortly after I was born, Tyne Daly as a mother of a Down Syndrome baby who was very much like me but Tyne Daly, being the ever wonderful and devoted mother, gave up her career to spend hours bathing her child in Jello… and …. Low and behold, the baby instantly realized it full potential as a contributing member of society. The makers of Jello were no doubt pleased and dad used to think that if only he had bathed me in Jello ….…….Wouldn’t have made any difference though since, on top of my other issues, I turned out to be Texture Sensitive too. I probably would have been traumatized instead of helped by the experience.

Speaking of movies, when I was 18 months old, I was also a TV star. A local TV station (WTNH) was doing a special on disabled children and had contacted Dr. LaCamera, because of his work in Birth-to-Three, for a referral to a family with a special needs child. He referred them to us and in 1993, I wound up with a twenty minute segment in a show called “Beyond the Dream”. (You would laugh now if you saw it: for starters, dad had hair!.)

I enjoyed my first years….I loved it when Marty, Rhonda and Ruth came. And mom hadn’t worked since she and dad learned I was “special” way back in the first trimester. Mom was always there. Dad was there as much as work allowed. Sis was always there to play with me ……

Once home ...

Once I got home, I set straight to work on building a following:

Mom and dad started for me at the NBSCU. Another baby named Isabelle had been born very close to my birthday but unlike my mom and dad, hers didn’t know beforehand that she had Down Syndrome. Mom and dad, with the nurse’s permission, left a note for them in her bassinette and we became friends. She and I both were in the Birth-to-three program. Birth-to-three started as soon as I was home and I was stable enough for it. A number of people came to see me from Birth-to-three, for various reasons, but by the time I was six months old, I had narrowed the number down to three people I always kept close to my heart. They were my favorite (non-family) people and even though they didn’t know each other when I came on board, they became friends through me.

My first loves:

• Marty (Teacher)
• Rhonda (Speech)
• Ruth (PT)

For two and a half years, until I “graduated” from birth-to-three and into the regular school system,we were really tight friends.

 

I became very close too with my many Dr’s. - and there were many - but to name the special ones……Dr’s LaCamera and Wessel were my pediatricians when I was born and Dr. Anderson joined thier practice very soon after I was born. As time went on, Dr’s LaCamera and Wessell retired from the practice but Dr LaCamera kept tabs on me through his work at my school, the ACES Village Street School, as he had through his work with Birth-to-Three. I kept them hoping with my usual "well-care" visits to thier office, fairly regular visits to the emergency room for one reason or another, ongoing issues like allergies and projectile vomiting, and generally “failing to thrive”.

 

Dr’s Gould and Mann joined what eventually became Whitney Pediatrics and I of course worked my magic on them too. By the time they joined, I had leveled off a little so I let them “off the hook” a bit by comparison, but I still kept them hopping.  I can't remeber he last time I saw Dr. Wessell but the others all visited me and followed me through my stay at the hospital and to the end.

My other favorite Dr. was Dr. Kveton. I saw him for my ears from the time I was 3, right up till the time I passed. I even had my own room with Dr. Kveton, not that they gave me my own room at his office, I just decided that I would take it. And since I had decided that this was "my room", I would not go into another one !   I liked Dr. DeLuca too…he was my orthopedist from as far back as I can remember and always watched my hips and monitored my ambulation. There were other Dr's too, at Yale and private practice, but these are the Dr's that I saw most often and knew me best.

 

I am sorry I took a break

I am sorry to have taken a break from this - I (Dad) didn't realize the therapeutic value I was receiving from doing this blog until I stopped. Remembering what happened so many years ago keeps me from thinking of how awful it is losing Andrew.

People have said that there is no pain like losing a child. I, in my ever logical thinking, thought that the pain would just be more intense than that of losing a parent (I've lost both) and as it was with losing a parent, the pain would slowly fade.

Most people lose their parents after they have moved out on their own and the day to day presence of the parent has already been diminished. They have comfortably settled into a routine of talking on the phone and seeing the parent in some convenient routine but the parent is no longer there when they wake nor when they go to sleep. When the parent passes, they think it a blessing because the parent's suffering has ended and the parent has led a long and happy life. Even if they don't believe this, it is said to them so often in the days following the death that they accept it as truth.

I am here to say there is no comparison.

My pain at losing Andrew transcends any other emotional pain I have ever experienced or ever will (except, God forbid, to lose another child). It is a whole new world of hurt, there is no depth or duration – it is constant and completely different in a way I find hard to describe…….. and the pain hasn’t faded, it has intensified.

As each day goes by, I miss Andrew more. At the strangest times, his image will flash in front of my minds eye for the briefest second and immediately I remember that I will never see him again. Suddenly and for no reason, I will hear his “voice” in the white noise of the day and immediately I remember that I will never hear him again. I will touch or smell or see something that reminds me of him and suddenly an image from the hospital, until then forgotten, floods over me and I choke up. My mind isn’t filtering out the “unpleasant” memories and leaving only the pleasant. Instead, it is retaining all the memories and bringing them to the surface one at a time.

And to all this add that mom and I don’t share the same pain. This I can reason out in perfect logic. I have pain in the realization that the things mom will always have memories of, I can never experience.

I am really just beginning to remember all that happened from the time I realized that Andrew would die until some time last week. I've remembered bits and pieces all along – the moment he died, a special friend at the wake, putting the Pall on his casket – but other things are just now emerging into my memory and all I can do is ask “why did my boy die ?”

Taking a break for a day or two......

Next post will be Sunday or Monday

Failure to thrive - the sequel

Failure to Thrive

“Failure to thrive is a delay in physical growth and weight gain that can lead to delays in development and maturation.”


“Sometimes failure to thrive is caused by a medical disorder in the child. The disorder can be as minor as difficulty chewing or swallowing (as with a cleft lip or cleft palate). Medical disorders, such as gastroesophageal reflux, narrowing of the esophagus, or intestinal malabsorption, may also affect a child's ability to retain, absorb, or process food. “

Over these first few weeks, if I wasn’t being fed and burped, I was on my way to, at, or, on my way home from a Dr… Gastrointestinal, eye, ear, pediatrician – name a discipline and I was seeing one of them. My “spitting up” had become projectile vomiting (from gastroesophageal reflux) and I turned a lovely shade of yellow to boot.

We never found out why, but I developed Jaundice bad enough to require me going back to the hospital for a week. This wasn’t that run of the mill “you need sunlight” jaundice, it was the “oh my god, what happened to you” jaundice. I was school bus yellow for a week and then, as suddenly as it appeared, it was gone.

As I said, we never did find out why

Homeward bound

And finally the big day came. I was going home !. Oddly, it was August 30 th – my original due date. Mom and dad came with a special “going home outfit” and a carrier and we were packed up and ready to go … but first, I got to see sis. I was so happy and so was she. After all that time of just seeing each other thru that tiny window, we could finally touch each other.

We all loaded into he car and off we went toward home. I had never seen the outside… it was great. I still had problems holding my head up so my view was a little limited by which way my head flopped but still .. I had never seen any of this before.

Once home, mom and dad and sis showed me around. I liked my room – it was bright and sunny and comfortable, but I spent most of my time with mom or sis because I had to be fed every hour.. And as I said, I didn’t like to be burped so it was more like this:

Feed me
Step one: one ounce of Nutramigen – 15 minutes
(A formula for babies with Food Allergies and Protein Sensitivity)
Step two: Burp me – 30 minutes
Step three: Clean up – 5 minutes
Step four: Spit up – 5 minutes
Step Five: Clean up again – 5 minutes
Start over……

And so it went until it was bedtime.

Now bedtime was interesting also. I had never been in the dark !. In NBSCU, the lights were always on !When mom put me in my cradle and turned out the lights, I was terrified. Over the next few weeks, I learned to accept the dark but it took a lot of mom and dad sleeping with the lights on to get there.

And I was still classified as “failure to thrive”…..

Failure to thrive

Most of my time in NBSCU, I was classified as “Failure to thrive”. I had to have my surgery– I couldn’t eat until then – which of course kept me in NBSCU while I waited, and even after that I couldn’t leave until I could suck and swallow, but overall I was considered failing to thrive.


Finally after 5 weeks, I had my surgery to fix the duodenal atresia. Up until then, I had been fed through a feeding tube and I hadn’t even tried to suck or swallow, so after my surgery when they finally gave me food in my mouth, I didn’t know what to do with it. This was all too new.

And I didn’t do so well after surgery either. I third-spaced.

“Normally, body fluids are distributed between the interstitial compartment (tissues) and intravascular compartment ( plasma). In third-spacing, body fluids collect in a "third" body compartment that isn't normally perfused with fluids. For example, with severe burns, fluids may pool in the burn site and cause depletion of the fluids in the first and second compartments. With patients who undergo long, difficult operations in large surgical fields, third-space fluids may collect and the patient may become intravascularly depleted despite large volumes of intravenous fluid and blood replacement.“

I looked like the Michelin Man. And then got pneumonia and started to really go down hill.

I remember that mom and dad had the “dreaded conversation” with the Dr’s but fortunately, I never got quite that bad. I did like to scare everyone though….

One time when dad was holding me when all the alarms went off . Alarms going off weren’t really that unusual because I was “desating” (decreasing oxygen saturation in my blood) all the time, but this time ….. I didn’t come back and the alarms just kept going off. The nurses came running and took me from dad and worked on me for what seemed like forever. Finally I was rosy pink again but it turned out that I almost died.

I had fun in NBSCU. I kept everyone running but after a while, I improved and eventually I could almost eat too. I had to be fed every hour, no more than an ounce and burped in between…and I did not like to be burped….but I was eating so I could go home.

Hood ornaments

After a few days, they moved me to “the annex”, where the less-than-critical kids were, but nothing else changed except that they gave me my very own “hood ornament” – an IV in the vein in my forehead – Dad said I looked like the Pontiac Indian.


I had been born at 3:27 a.m. on July 3. Mom went home a few days later but came to stay with me every minute she could. Dad’s work heard about me and basically gave him off from work “ until Andrew comes home”. He only had to go into the office for 390 minutes a day and then he could leave so he too stayed with me all that he could. They would take sis to daycare in the morning so that her world would stay as stable as possible and dad would go into the office, then they would come and stay all day until sis had to be picked up. After that, they would have dinner and one of them would come back to stay late into the night.

Mom would always stroke my head and make a cross on my forehead with her thumb and dad would stroke my temple with his thumb, things they started to do again in my last weeks. My eyes weren’t always open, in the beginning or in the end, but when I felt them do that I knew they loved me and I relaxed regardless of what was going on or how afraid I was.

Anyway, they would put there arms thru the portals in the incubator and stroke my head and put their hands near mine so I could wrap my tiny hand around one of their fingers.

After a few days, as long as mom or dad were real careful of the tubes and wires, they could take me out of my incubator and hold me.

Sis hadn’t had chicken pox (more about that later also) and could bring the virus into the NBSCU from an exposure that she was incubating. Because of this, she couldn’t come into the NBSCU as chicken pox could kill me and the other babies in the unit, so instead, even though I got to look at her thru a small window, I didn’t know her touch until I was two months old biologically. That was so unfair, not only to me but to sis and I never really knew until my funeral how much she hurt to not be able to touch me all that time. I loved her so much and she couldn’t even touch me. Here’s a secret though, mom never had te chicken pox either and when the staff asked about sis and then forbade her from coming in, mom quickly decided to not tell them about herself. It was too late for sis but at least mom wasn’t barred.

Oh, you may be wondering what this “biological” stuff is… well, with us premature kids, we have two ages: our biological which is how long since we were actually born, and our developmental which is how long since the date that would have been our birth day.

When I was finally was held by sis, I was biologically 2 months old but was developmentally just born ! Cool, eh ?

NBSCU

The next two months (six weeks actually) are hard for me to remember, so much was going on….

When I arrived in the NBSCU, I was immediately put on CPAP since my lungs weren’t fully developed. It was funny, kind of like a clear plastic cake tray cover with a hole in it for my neck, and they stuck me in an incubator. I got the “honored” position of “the hot seat ‘ or “position one” , meaning I was the sickest baby in the NBSCU.

Needless to say, I was trying to pull tubes from day .

That first day, dad came to see me and mom came down from her room. We finally met and there was an instant superglue-like bond. All day long a whole bunch of strangers kept coming to see me, some were family folks but more were Dr’s and nurses. I just wanted them to leave me alone and I fought them as much as I could.

Mom and dad were being visited also, by these family people, Dr’s, nurses and a whole lot of other people telling them that I was “special” and why. Finally, late into the evening, they got a chance to talk, how mom knew that life was never going to be the same and they joked about the night before…how all that was missing from my arrival were the fireworks. And just as dad said that, the New Haven July Fourth Fireworks display began over the harbor …

My arrival was complete ….

So there we were ...

So here we are. July 3, 1991. My arrival was quite the production.

I made my debut with all the fanfare I could muster. I was premature, my birth was fast and full of surprises (You should have seen the look on the OBGYN’s face). Mom went medication free since there wasn’t time to administer any but, given my condition, meds couldn’t have been used anyway.

We determined later that mom didn’t realize she was in labor for two reasons: She never had labor pains with sis (really. Only one small “cramp” in the Trumbull Arthur's) and  it wasn’t a typical labor…. No hormones, no internal clock going off … just that the uterus couldn’t stretch any more and was trying to empty itself …. So I guess it really was “cramping” after all.

And mom’s water never broke until the OBGYN started to “poke around” and then it broke in a flooding gush. And me being as small as I was, I pretty much just surfed the wave into the outside world.

So there we were:

I was technically a still birth - no heartbeat and ,as dad recalled later, a lovely shade of grey....but I was revived quickly by the newborn staff.

The tear of the cord and the abruption combined to put mom at great risk even though she and dad didn’t know it at the time.

Dad just buzzed along on caffeine and nicotine and tried to fathom what was going on.

Mom said later when she got to the hospital and while dad was banging on the (wrong) door, that she looked up into the sky and thought to herself that life was changing forever.

She was right ....