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.
Monday, November 30, 2009
Friday, November 13, 2009
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.
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.
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.
Tuesday, November 10, 2009
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. …
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. …
Monday, November 9, 2009
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:
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.
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.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.
Friday, November 6, 2009
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. ….
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.
Thursday, November 5, 2009
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
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
Wednesday, November 4, 2009
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….
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….
Tuesday, November 3, 2009
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…..
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…..
Sunday, November 1, 2009
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 ….
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 ….
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