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Wow it's February 14th already. I blogged about this date last year. Kinda the same drill this year with some new stuff. It was February 14, 1989, we had been up ALL night discussing whether or not to let Dr. Karl put a g-tube in you . He seemed very confident it was the right thing to do and was becoming more and more annoyed with our reluctance. Except I was 24 and had never really heard of a g-tube, there was no Internet Feeding Tube Group to join because I couldn't even get my hands on medical literature, never mind a web site . Not invented yet. So, we sat there, me, daddy and Grammy (and Dr. Ass Karl) ~ he finally tired of our questions and left our 'meeting with quite a dramatic flair informing us we had "missed our window, it had closed" and now we were in for it, he knew not when another 'window' would open. Except the 'window' was his term for an operating room slot and it turned out one opened up the very next day, Valentine's Day. Do it or he's gonna die. We consented.
Your dad and I walked the halls as they took your tiny little body into surgery. You were exactly two weeks old. We went to the Gift Shop but the only thing For Sale were Valentine's Day things, kinda not appropriate for the whole g-tube / your kid could die on the operating table type of mood . So we settled on this tiny little heart balloon and rushed back to the waiting room, only to pass the Ass (Dr. Karl) and his Stooge (the Med Student).
? WHAT ? WHY ARE YOU WALKING AROUND ? AREN'T YOU OPERATING ON MY SON ?
"Oh it's all done" ~
Crap. Really? Is ... he ... (swallowing hard) .... alive?
Annoyed face of the surgeon. "Yes" ....
Kinda like that awkward moment when you expect a little something more and you aren't gonna get it. They kept walking. I wanted to smash their faces off even though they had just saved your life. Did they have to be so ... well so ... cold?
Yes. Apparently . I learned from it and moved on and you lived. Ha ha. I have thought about finding him, Dr, Karl, he's probably 80 by now and maybe saying "Thank You" even though he was the Ass of all Surgeons. He did save your life, even though he didn't really seem to care either way ...
Whatever.
So anyway, here we are. Another February 14th or Saved Bryant's Life Day by having a G-tube put it. Seemed very odd at the time but we grew used to it. Of course, March 7th rolled around and they put a Trach in so I don't know, I guess we just got used to all the surgical jargon.
I was reading another Blog yesterday and the Blogger was discussing how when we die, we basically amount to, at most 6 small paragraphs in the Obits. I thought to myself, hmmm.... Bryant got a few more paragraphs but overall I suppose it's true. Even if you were great and famous and get a lot of press, eventually you run out of ink ... and what is left is what you have left behind in the life that one has lived. This weekend we were out and talking about you and you did leave a Legacy of Life & Love. When all is said and done, that's about all we can do here on Earth.
Therefore, last night I was ranting again, my discussion with God have become increasingly long and involved which I personally think is a good thing. I am sure I am on mute for much of the time but who would blame Him? I can do a lot of talking. Mostly about you. And how much I miss you and what did it all mean and how could Bryant have lived through ANY of the stuff he did? I mean how? It was not even medically explainable.
The further away I get, closing in now on 3 years since you are physically gone, it seems to actually be getting clearer. See, what's strange Bryant is kind of a paradox. I never really envisioned you as being different ~ like people will suggest that when we "meet" again you will be 'whole' that is not have the disabilities you were born with. Yet although my life was spent chasing death away and keeping you well, your medical issues front and center, I never really saw you that way. You seemed ever-patient and almost ever-there ~ it's very hard to describe and I somehow do hope to find the right words - but you always seemed one step ahead - in the know, patiently guiding and waiting for me to keep up.
Cue the G-tube discussion back ... as it is Valentine's Day you know. Dr. Karl eventually did grace us with his presence to 'brief' us (I am refraining from using "brief" as a pun). But it was brief. Anyway, he told us your stomach was "the size of a pea" and for dramatic purpose, he put his fingers into a shape of a pea. Kinda like we were morons and didn't get the severity of your illness. Of course not Dr. Karl. We were in FREAKING SHOCK.
But thankful. And somehow it all seemed like that was how it was supposed to go. You spent 4 God-Awful months in that NICU with everything from the G-Tube to the Trach to the Cardiac Arrest to well just about everything until they said they could do no more for you and would send you home to die. Ironically, you did "die" at home, but that was 20 years later.....
Which brings me to my rants. Again. I think you were about 2 and you had a pretty significant ASD (Atrial Septal Defect - Heart). You were finally stable enough to have the surgery to close it and we went in for the pre-op stuff and they are doing the EKG and the ECHO and you know that "Uh-Oh" look of the Technician and we were like NOW WHAT? Turns out, she coudln't 'find' the ASD. The called the cardiac surgeon who came up and he looks and says "Oh ~ look at that (excuse the irony) !" The ASD closed on its own. All by itself.
Last night, I was on one of my "what does this all mean" rants, particularly and specifically in relation to your life and all that you accomplished. And I asked just if I could see you in my dreams. That does comfort me ... quite a bit. So I drifted off to sleep and I did dream ...
In the dream you were sort of sick, the type where we weren't sure if you were getting sick or what and our plan to go to Disney was up in the air (which happened many times in 'real life'). The dream was life-like, very real, but I wasn't scared that you were maybe sick. And in the dream we did all the stuff we used to do, our protocols if you will, when you were 'maybe' getting sick ... because it was always your lungs ....
And in the Dream you got better and off we were to Disney. So it was a happy dream. But the dream was llllooonnnngggg which meant I got a lot of time to spend with you. In the dream you were talking and that was a surprise, we were so happy you could talk for real, no signing, no Dynavox, talking and you were saying you wanted to go to Disney and we were so happy and excited. Mostly me as I am usually the star of the dream and it's from my perspective so people just wander in and out ~ except for my dreams of you. You were so real and I kept hugging you and kissing you and knew I had a limited time with you.
Like in real life. I knew every day with you was a miracle. I still am not quite certain 'what for' ~ besides the obvious that you accomplished on your own throughout your life ... your Mission. I do know, for sure, it was a miracle. Yet I will continue my nightly discourse with God because the more I do, the clearer things become for me. Just like your eyes and how they gaze in all the pictures. Even the ones with you on death's doorstep ~ you knew you weren't going in ~ not by a long shot and not for a long time because you had stuff to do .... Right at the camera you would look as if staring life square on. You never once looked away.
I miss you Bryant. Yet I know you have answers left for me to find. I pray, by the Grace of God, that He, in his infinite wisdom, will, in time reveal it to me. A lot to ask I know, but I plan on being quite a pest as is encouraged in Matthew 7:7 ~ xo xo Mommy
Wow it's February 14th already. I blogged about this date last year. Kinda the same drill this year with some new stuff. It was February 14, 1989, we had been up ALL night discussing whether or not to let Dr. Karl put a g-tube in you . He seemed very confident it was the right thing to do and was becoming more and more annoyed with our reluctance. Except I was 24 and had never really heard of a g-tube, there was no Internet Feeding Tube Group to join because I couldn't even get my hands on medical literature, never mind a web site . Not invented yet. So, we sat there, me, daddy and Grammy (and Dr. Ass Karl) ~ he finally tired of our questions and left our 'meeting with quite a dramatic flair informing us we had "missed our window, it had closed" and now we were in for it, he knew not when another 'window' would open. Except the 'window' was his term for an operating room slot and it turned out one opened up the very next day, Valentine's Day. Do it or he's gonna die. We consented.
Your dad and I walked the halls as they took your tiny little body into surgery. You were exactly two weeks old. We went to the Gift Shop but the only thing For Sale were Valentine's Day things, kinda not appropriate for the whole g-tube / your kid could die on the operating table type of mood . So we settled on this tiny little heart balloon and rushed back to the waiting room, only to pass the Ass (Dr. Karl) and his Stooge (the Med Student).
? WHAT ? WHY ARE YOU WALKING AROUND ? AREN'T YOU OPERATING ON MY SON ?
"Oh it's all done" ~
Crap. Really? Is ... he ... (swallowing hard) .... alive?
Annoyed face of the surgeon. "Yes" ....
Kinda like that awkward moment when you expect a little something more and you aren't gonna get it. They kept walking. I wanted to smash their faces off even though they had just saved your life. Did they have to be so ... well so ... cold?
Yes. Apparently . I learned from it and moved on and you lived. Ha ha. I have thought about finding him, Dr, Karl, he's probably 80 by now and maybe saying "Thank You" even though he was the Ass of all Surgeons. He did save your life, even though he didn't really seem to care either way ...
Whatever.
So anyway, here we are. Another February 14th or Saved Bryant's Life Day by having a G-tube put it. Seemed very odd at the time but we grew used to it. Of course, March 7th rolled around and they put a Trach in so I don't know, I guess we just got used to all the surgical jargon.
I was reading another Blog yesterday and the Blogger was discussing how when we die, we basically amount to, at most 6 small paragraphs in the Obits. I thought to myself, hmmm.... Bryant got a few more paragraphs but overall I suppose it's true. Even if you were great and famous and get a lot of press, eventually you run out of ink ... and what is left is what you have left behind in the life that one has lived. This weekend we were out and talking about you and you did leave a Legacy of Life & Love. When all is said and done, that's about all we can do here on Earth.
Therefore, last night I was ranting again, my discussion with God have become increasingly long and involved which I personally think is a good thing. I am sure I am on mute for much of the time but who would blame Him? I can do a lot of talking. Mostly about you. And how much I miss you and what did it all mean and how could Bryant have lived through ANY of the stuff he did? I mean how? It was not even medically explainable.
The further away I get, closing in now on 3 years since you are physically gone, it seems to actually be getting clearer. See, what's strange Bryant is kind of a paradox. I never really envisioned you as being different ~ like people will suggest that when we "meet" again you will be 'whole' that is not have the disabilities you were born with. Yet although my life was spent chasing death away and keeping you well, your medical issues front and center, I never really saw you that way. You seemed ever-patient and almost ever-there ~ it's very hard to describe and I somehow do hope to find the right words - but you always seemed one step ahead - in the know, patiently guiding and waiting for me to keep up.
Cue the G-tube discussion back ... as it is Valentine's Day you know. Dr. Karl eventually did grace us with his presence to 'brief' us (I am refraining from using "brief" as a pun). But it was brief. Anyway, he told us your stomach was "the size of a pea" and for dramatic purpose, he put his fingers into a shape of a pea. Kinda like we were morons and didn't get the severity of your illness. Of course not Dr. Karl. We were in FREAKING SHOCK.
Which brings me to my rants. Again. I think you were about 2 and you had a pretty significant ASD (Atrial Septal Defect - Heart). You were finally stable enough to have the surgery to close it and we went in for the pre-op stuff and they are doing the EKG and the ECHO and you know that "Uh-Oh" look of the Technician and we were like NOW WHAT? Turns out, she coudln't 'find' the ASD. The called the cardiac surgeon who came up and he looks and says "Oh ~ look at that (excuse the irony) !" The ASD closed on its own. All by itself.
Last night, I was on one of my "what does this all mean" rants, particularly and specifically in relation to your life and all that you accomplished. And I asked just if I could see you in my dreams. That does comfort me ... quite a bit. So I drifted off to sleep and I did dream ...
In the dream you were sort of sick, the type where we weren't sure if you were getting sick or what and our plan to go to Disney was up in the air (which happened many times in 'real life'). The dream was life-like, very real, but I wasn't scared that you were maybe sick. And in the dream we did all the stuff we used to do, our protocols if you will, when you were 'maybe' getting sick ... because it was always your lungs ....
And in the Dream you got better and off we were to Disney. So it was a happy dream. But the dream was llllooonnnngggg which meant I got a lot of time to spend with you. In the dream you were talking and that was a surprise, we were so happy you could talk for real, no signing, no Dynavox, talking and you were saying you wanted to go to Disney and we were so happy and excited. Mostly me as I am usually the star of the dream and it's from my perspective so people just wander in and out ~ except for my dreams of you. You were so real and I kept hugging you and kissing you and knew I had a limited time with you.
Like in real life. I knew every day with you was a miracle. I still am not quite certain 'what for' ~ besides the obvious that you accomplished on your own throughout your life ... your Mission. I do know, for sure, it was a miracle. Yet I will continue my nightly discourse with God because the more I do, the clearer things become for me. Just like your eyes and how they gaze in all the pictures. Even the ones with you on death's doorstep ~ you knew you weren't going in ~ not by a long shot and not for a long time because you had stuff to do .... Right at the camera you would look as if staring life square on. You never once looked away.
I miss you Bryant. Yet I know you have answers left for me to find. I pray, by the Grace of God, that He, in his infinite wisdom, will, in time reveal it to me. A lot to ask I know, but I plan on being quite a pest as is encouraged in Matthew 7:7 ~ xo xo Mommy
2 comments:
Yes, Cheryl - Bryant was in fact every day a miracle fulfilled - what an act to follow was Bryant - every day they came in to tell us disaster - and the next day it was all wrong - What a sorry state of affairs for Drs. who are supposed to know all this stuff - but they didn't with Bryant - thankfully you caught on and were not in a state of shock anymore - no matter what they said, because somehow you KNEW - the next day would reveal quite another answer - and Bryant did come home and thrive and because of your research into the bypass operation Bryant had very few episodes of severe pneumonia anymore and enjoyed so much good times - you and Dave had such severe decisions to make, hard ones, but the ones you made did prolong Bryant's life and were certainly guided decisions - love Grammy and Mom
Boy it is a long time since I thought of that stupid face Dr. Karl - he was something else - what a jerk - but as long as everything turned out good for Bryant, we didn't care did we, we laughed it off, constantly thinking and talking about the things he did, like pushing Dave into a corner with a cart or something, I don't remember - and I was so nervous, and he said some really hateful thing to me that made it worse - well - as soon as we got out of there, things changed and you learned a lot of things - and the things that they did do - helped Bryant to grow and get healthy -
You are right Cheryl, nothing was medically explainable - and that is why the neurologist who knew what he was talking about told you that Bryant would do what he was going to do, he had no explainable name for what he had - so they couldn't compare him with anyone - and he did show us what he was able to accomplish - with all the prayers that were going up to Jehovah I'm sure that played a great role in what happened - as the scripture in 1Cor. 1:19 says the intelligence of the wise men he will set aside -etc. he is the higher intelligence -
Once you got accurate information and you sure SEARCHED for it, you were able to accomplish things for Bryant - No, I know Cheryl, when people say that in the new World Bryant will be whole - you don't exactly hold that as what you believe Bryant was - he WAS whole - his whole being was magnificant - what he achieved was unbelievable - and noone can really feel or know just exactly how Bryant was to YOU! whatever your love was total! and his love was total! I am so happy that you had a long real dream of Bryant and he was talking - in dreams there is reality and there is the dreaming - in reality you knew he didn't talk and in the dream he was talking and that was so wonderful - I am so happy you had that type of dream - that one thing is what I think people mean - the talking part, etc., telling you things on his mind and in the new system what he thought all along and you probably already have an idea of what he was thinking about because you were so very close to him - My love for you is so strong and my love for Bryant too - Love Grammy
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