New Year's Eve

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Trying on shades.   You were not a huge fan of shopping ~

Watched videos today of you Bryant.  Mostly of us at Disney, The Happiest Place on Earth.  It's New Year's Eve, officially, and tomorrow brings 2012. 

I was watching "Midnight in Paris" and this quote was said which I think really sums up my life with you:

"I believe that love that is true and real creates a respite from death; all cowardice comes from not loving or not loving enough, which, to me, is the same thing ~ And when you look death squarely in the face .. it is because you have loved with sufficient passion to push death out of your mind, until it returns, as it does to all men" (Midnight in Paris)

You had a rough start, that's for sure.  You were not supposed to live, at all, not even 24 hours.  But you did, for 20 years.  The interesting thing about that is we had a choice.  As posted in the previous blogpost, you did quite a few things that surely made me crazier than I would be ~ like almost dying so many times.  Cardiac Arrest, Status Seizures, over 25 operations, countless pneumonia's, life support for 2.5 years .... bla, bla, bla.  And you were so susceptible - like the time on New Year's Eve, 1998 - you surely would have died if it hadn't been New Years and we weren't up late.  So I guess that's what sums up our lives.  Horrific scary events followed by incredible bliss. 

(In the hospital, in bed - joined by Emily - she was always by your side Bryant.)

But with that risk, your medical fragility and all that, we were never paralyzed with fear.  We did everything we could think of, went everywhere, never placed any limits on what you could do or see.  If we could adapt something, you would do it, including skiing, horseback riding and traveling the United States (and quite a bit more).  Having been given the heads up that life was short and you might not have 80 years ~ it was clear that we had to hit the gate running.  The other choice?  Do nothing.  Live in fear and angst about what could have been.  Why couldn't you have been healthy?  Why did you have to suffer at all?  Why, why, why.  And sometimes, in the beginning, I did allow those thoughts to intrude, but mostly we just did not have time for them.

Which brings me to now where I have a lot of time to think about why ... but I have chosen not to for the most part.  I save my rambling rants for the Blog and for my Journal.  It's unfair, no question.  But to choose anything else, to love to the fullest, only means the pain will be as intense when the loss happens.   I think, you grieve in proportion to HOW you love.  That doesn't mean any one loves any less or you can judge who loves who by any demonstrative behaviors, it's within a person to know.  But for me, and you, life was out loud, balls to the wall, pedal on the metal, good times .... so in missing you, it's the same, out loud, balls to the wall, pedal on the metal ... not so good times. 

Through the Love and now through the Loss, I have learned some things.  And as one year comes to a close, I wonder how much I will change and learn.  I am trying to listen now Bryant, rather than being 'out loud" all the time.  Emily still insists I have no filter, but I am working on it.

Your face is so brilliant, always radiant and always smiling.  So forgiving and so ready for new things.  I wonder what you think of all this.  Someday I will know.

So in comes 2012.  Love and Miss you Bryant,
xo xo Mommy

Almost New Years

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So it's almost a New Year.  We are doing our normal New Year stuff like renovations during the break.  Daddy put in new lights and it's much nicer in the kitchen.   Near the window is a tiny little bubble ... I like to think it's energy, happy energy :)

This picture is of you saying "hold me" - and I did, do you remember how we used to dance????   I love you so much.

Traditionally, New Year's Eve has always been a kind of bad time.  You used to pull your worst antics on New Years' Eve.  A couple samplings?  The time you decided to drive your wheelchair down the stairs and almost died.  The time you decided to get wrapped up in the TV cord and have the ginormous tv fall, almost killing you and of course, lest we all forget, the time you spiked a fever to 107, went into status epilepticus (for two hours) requiring the hospital ER to drill into your shins (intraosseous infusion).  So as anyone could imagine, I always held my breath for you around this time of year.  Oh and the time you fractured your femur.  Yeah good times, not so much.

There you are on the road with Dad and Liam .... with the mountains and horses and just that gorgeous day =)

Last night I had an incredible dream.  Not quite Epic because I can't remember it clearly, but clear enough.  There were two parts 1)We were together and it was beautiful out, sunny and just perfect temperature.  We were almost blissful, carefree and walking down a road which was post-card, picture perfect.  At times we would run and laugh and other times, just walk and stop along to look at the landscape.  It seemed, in the dream, that people would come and go, like your siblings, and they'd scamper off to something else, but would continue to 'come back' to our adventure.  In the 2) second part of  the dream, I could touch you, we were also at one point dancing.  I had you out of the wheelchair and we were twirling and dancing and it was wondrous.  Daddy asked me why I kept repeating the scene (almost as if I had control of it) and I said "Because I can touch him and feel him".  In was very real in the dream, that part is definitely Epic, in my opinion, because I COULD feel you and kiss your head.  I remember thinking "take advantage of this" as if some voice was telling me too.  It was not a lucid dream in the true sense of that, but I do know 'something' was telling me to keep repeating it so I could really really spend that time with 'you'.

  Then I woke up, which I will tell you, I hate doing when I am having that type of dream. 

Kind of like this road .... not the best pic but you get the overall general picture ... horses in the background etc.  That's Julia off to the left ....  And of course, me and you!!!!!

With Julia, Emily and Daddy on our road..........

Like in this picture, holding you and just swinging you around, you loved to dance and loved to have fun :)  And you sure knew how Bryant.   Lessons that I try and keep with me and the wonders you shared with us.

So another year comes to a close.  Still a few days away, but of course, I am thinking about 2012, another year without you physically here.  Time seems to fly and stand still all at the same time.  Time.  Hmm.....  I hope I have more dreams like last night.  But then, of course, life with you has been like a dream.  We all miss you tons Bryant.   Emily misses you a lot.  I hope she will dream of the great times you two shared.   My two little peas in a pod.

Love you xo xo Mommy <3

Daddy & Me

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Well there we are.  Newlyweds.  December 20, 1987.   We were the typical "meet cute" couple ~ we met, fell in love and were married all within a year.  I guess you can say we were ready, both of us were 'older' in our 20's ~~ we discussed children and agreed we both wanted them.  So, five months later, I discovered I was pregnant with you.  We weren't planning on having a baby quite that soon; we were going to build a house first and do some other stuff but that was put on hold.  I knew something was 'wrong' from the very beginning.  Around Week 7/8 I started spotting.  Then gushing.  Rushed to the hospital and the doctor came in and said I was most likely miscarrying or would but it was late and he wold prefer to wait 'til morning to 'do anything' (meaning a D&C).   I had been into the office earlier that day and that had taken an ultrasound but back in the day, nothing really was said because I was so early.

The doctor informed us that this was common and not that big of a deal but I was completely stricken with sadness.  This could NOT be happening.  But home we went, ready to go to the office the next morning for the D&C.  Well, during the night, the bleeding stopped and when we got to the office, the doctor got YOUR heartbeat by regular doppler (on my stomach) ~ he said to get a heartbeat that early by the Doppler meant the beat was strong.  So what was up with the bleeding?  He said most likely I had "passed a twin" and that was common too.

Yet I could not shake the "something isn't right" so I bugged them constantly, to which they finally replied "If you don't stop this worrying you will not enjoy the pregnancy!".  Enjoy?  I was a nervous wreck.  Something told me that everything was not alright.   Then, 36 weeks in, I had been to the doctor, everything seemed okay except I was ENORMOUS.  He guessed you were going to be 10 pounds probably.  Now that should be a red flag for anyone but we were all big, Glenn (your uncle) topped the scales at 10.4 and we just had "big babies". I was ecstatic!!!!  Not for long.  I went home and the movement stopped. I tried all the tricks, laying on my side, eating ice cream, etc.  Finally, I called and they said "Go to the ER" and the ER said it was probably a lazy baby, you were sleeping and I was, of course, over-reacting.  Except they decided, just to be safe, they would put me on a monitor.  And your heart rate stayed flat.  140, 141, 140, 139, 140......... not good.  The doctor said this was not good and summoned the U/S tech (this is the old days remember, they had to call someone IN around midnight) ~ who confirmed the "not good" because not only were you NOT 10 pounds, I was loaded with massive fluid.   Surely you would die so they had to do an Emergency C-Section but they wanted to wait 'til morning.  So I spent the night in anguish hoping you wouldn't die.

Right at 8:00 a.m. I was wheeled in and the c-section done.  The doctors were frenzied with the situation, saying the baby is grossly deformed and this and that and don't worry you're young you can have more kids and this wasn't your fault and the baby is incompatible with life and so on.  Long story short?   I went to see you and right then and there it was apparent that you were here to stay.  I don't know how I knew that but I did.  You were transferred to a neonatal hospital 2 hours away and I demanded to go but they said they couldn't do that so I said then I will check myself out and so they arranged an ambulance.

You spent four months in the NICU with almost every imaginable ailment.  You received your g-tube on Valentine's Day 1989 and your trach March 7 ~ and every complication including narcotising entrocoloitis, congestive heart failure, multiple full arrests and a constant state of pneumonia plus life support.   Then, with nothing left to do for you, they allowed you to come home "to die" because they said you would never have purposeful movement and you just wouldn't live.

But you did.  And your life and love just made Daddy and Mine so much stronger.  We were a very efficient team and you definitely were our focus.  But in your father I saw the most incredible man, the most loving father and husband ever.  And of course, the two of you loved to pull pranks on me or scare me half to death.

Daddy was always with you.  Keeping you safe.  Making sure you were okay at night at Disney World and making our own stander for you, Daddy was always thinking of ways to get what you needed, even if he had to make it / adapt it himself.  He made sure you went everywhere and saw everything; and it's just incredible to have witnessed the kind of love that you both shared.  And your sense of humor too.  Remember all the games and practical jokes and tricks you and dad would play on me??????   Haha.  Oh such good times.

So this past week we celebrated 24 years together.  And of course, you were there, somehow, incorporated into the conversation with the waitress, you always will be such an amazing spirit.

Your father loved you sooooo much.  And I know you loved him sooooooooo much tooooooo!  It was always amazing to see you both together.

Yep, just you and your dad.  I know he misses you so much Bryant and sometimes it's so hard for me because I can write how I feel and I have no problem telling people how I feel ~ and dad just isn't that way.  He tries so hard to be there for me but you know, I am high maintenance ;)    Sometimes, he'll tell me he had a dream about you and how you were together again, doing all your fun things and it just makes my heart soar.  The good times Bryant so far outweigh the bad, which makes it a circle of sadness that sometimes is hard to escape.  I try and jump out of it to stop it; stop the sadness and remember the happiness.   That's what Daddy says he does; he says he focuses on the good times.

I could probably put 100 pics up here easily of the things you did.  He made sure you were part of everything, always and if there was an obstacle, he was on it, making sure he found a way to make it happen.  Even riding the Harley with him!  And those times in the hospital when you were so sick and I heard "the voice".  Man, the hospital called Security!  Your dad might be a man of few words, but that voice, when it rumbles, get out of his way!!!!

I love him Bryant and I can see you in him, it's so obvious.  How could I ever stay mad at him?  He makes my life complete and someday Bryant, when we are all again together, the circle will be complete, but this time happiness.  We all miss you and sometimes I am so wrapped up in my own grief that I just don't know how to help Daddy.

I love you both so much.  And we both miss you Bryant.  So we did have a Happy Anniversary ~ our love created you and for that, I am forever grateful :)    xo xo Mommy

My visit to the "other side" - lots of questions!!

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Wow.  Last night I had a very interesting dream.  I won't say it was Epic as in the definition, but I would say maybe it was Epic for me.  I had a really bad nightmare the night before (Friday night) and was up basically half the night and when I went to try and sleep, it was nightmares.  Something about Bryant being missing and no one knowing where he was and us in a massive panic ...

So last night (Saturday), probably more accurately Sunday a.m. (I sleep best from around 5:00 a.m. on which is why I am rarely up before 10:00 a.m.  

Okay here goes.  In the dream I was presumably "dead".  There is no information or surrounding story on how that came to be or when.  There is also no actual information in the dream about where I was.  It seemed like I was inside at the time as I was in a line of processing.  Everyone was very calm and waiting but as usual, I was making a scene.  Someone (I won't name) walked by (this person is not dead) and I was like "OMG!!  And went to hug him but he just said "Go find your own family").  I wanted information and NOW!  A woman (not a face I recognized came up to me and so calmly put out her hand and said "follow me").

I didn't ask what was going on, because I seemed to have a sense of calmness and non-urgency even though I was somehow conflicted and upset on another level.  The woman began explaining to me the scenes I was seeing.  An older man walked by me and I said "HUH!  There should be no old people in heaven!" and she said "That's only how you are seeing things now.  It usually take around 4 days or so for you to be able to "see" and accept the more spirit-like enviroment so you are eased into it".  Okay, that made sense.  Then I said, well how do you do it, is it the same for everyone?  And she said "no" and said I'll take you to an active scene.  We went to a house and a family was getting out of their car to go inside.  Except someone was there explaining that they were no longer "home" in the sense of their physical earthly home.  It was a replical.  I remember feeling like "Oh No ~ the whole family was killed together!" probably an accident but they did not a memory of the actual 'cause' of death at that time.

That bugged me as well, even though I understood how it would make sense to ease people into it.  I said "but what about violent death, like being rape or murder".  She took me to a scene of a rape and I was so upset (still calm-like though which was wierd).  Then, she took me to see the woman who was surrounded by family and over-joyed.  In the Bible there is a scriputre that says something to the effect that the badness of all endured will not even be called to mind when the wonders of God are revealed.  This is exactly what it seemed like.  My questions continued "Well what about soldiers who die in war and other questions which have plagued me forever ... and she answered them all."   Then I asked about famous people.  She laughed and said yes, they are around but you'll never see them sitting around talking about their "Glory Days" because they move on.  I was puzzled and asked what that meant.

She explained that the human mind is capable of forward progress (yes I know that's a football term and I was football giddy yesterday).  Anyway, this particular type of forward progress was the on-going experience that people would experience in this new place, and that it was not possible in imperfect human state.  I questioned that too, well how do you help people who are so sick, like with mental illness and stuff?  She explained that the chromosomes of every one are brought in line with perfection, so there are no mistakes or anything and that helps to make the person"whole" and "perfect" to how they are supposed to be without taking away who they are.  The bad memories or the mental illness, again, is not even in the picture because of this; as well as the calmness that seemed to bring a sense of peace and purpose to everyone (no one floating on clouds, sorry).

The things that seem so important in the physical world were not even an issue so no one felt 'better' than anybody.  I then asked about hell.  So is there a hell?  She said "yes, in hell we torture people until they pray for environmental justice" or something like that but it was a joke.  She laughed and said "there is no hell" you either make it here or you don't make it anywhere, just a state of non-existance.

At this point, I was giddy with excitement but one would think my first order of business would be to demand to see Bryant.  However, I was so calm, now watching people united with family and also seeing "new ones" arrive and realizing they were dead but seeing their welcomers estatic to see them.  Almost like when you are on vacation and miss someone and wish you could share the experience.  In this case, even though seeing someone would mean they had died, no one was discussing manner of death or anything like that, but instead, they were all ready to go and begin the "real life".  It was so incredible.

Finally, basically satisfied with my answers (I asked a gazillion questions) I asked "but what if you still have a grievance?" and she said "Then you go see the Almighty" and I said "Yeah how long is that wait for that" and she said "He's wide open, all day, no wait".  And I was like, "wait, what" and she said, all the desires are filled (another Bible verse).  She did not seem irritated at all with my questions and reluctance to believe such a place could be.  The thing was, it wasn't strange, like fake.  It all made sense and that was part of the calmness.   I remember feeling "Man I can't wait til everyone sees this".

I may add more later when I remember specifics but the dream was very detailed and there was a lot of chatter in the dream between me and my Guide.  This is generally unsual in dreams to have that much talking without something wierd coming through, you know, like an elephant or other random thing moving on through so you know you're dreaming.  The calmness and peace was incredible but it didn't 'numb' anyone or me, just made evereyone more curious and industrious and I guess, the key word, satisfied.

Many of my dreams (except the Epic Ones) have resulted in my waking either crying or otherwise upset, sometimes for days after.  But this one, like the Epic Ones, did not do that. In fact, I woke up around 9:00 a.m. and was like NO WAY I am going back!  I went back to sleep and kept dreaming until 11:00 a.m.  Remember I had A LOT of questions.  There was just so much to the dream, so many details. I will have to try and remember them all and write them down immediatelay so I am sure to be updating this soon with more specific details, because I had questions about everything you can possibly imagine.

Hey Bryant, maybe you were my spirit guide in disguise, ya think?  Or more likely you were off doing something waiting for me =) 

xo xo Mommy

Legacy of Love

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Today was an interesting day.  The day before a break ... the kids have next week off ... Holidays are here.  Lots going on with everyone.  I was the "Host" of the Winter Break Party and it was crazy.  All good in Liam's Class.   Kids just have so much energy :)  So I was trying to put kids with parents, you know, match faces and stuff; and I asked this one mom - which one is yours, etc.  And so we started talking.  Now here's the odd part.  I wear Bryant's Necklace all the time.  I assume people see it and know who he is, especially around Town and at the school.  So we're talking and somehow we started talking a little about Bryant and she said she was sorry ... and I thought, how can they not know ... but whatever and then she asked me if Christine Large took care of Bryant.  Christine was Bryant's nurse for 10 years+.  She met us on 9/11 - really THE 9/11 and in the chaos and sadness of that day, for us, a beautiful relationship began.  So anyways, I say "Yes, she did" and the woman then says "Oh wow. I feel like I know you and I definitely know all about your son".  She went on to tell me how Christine used to talk about Bryant all the time and how much Christine loved him (which I know, see post below with Christine at Julia's Orchestra performance).

Christine is like family, definitely a beautiful person inside and out.  What struck me, though, after the conversation ... I went to feel my necklace and realized the whole time, it was twisted around to the silver side (no picture).  It amazed me how I was drawn to this woman and how it made my day, even with all the joy and happiness and electric energy from the kids' party, I was overwhelmed to know really how far-reaching love and connection is and how Bryant continues to guide me and lead me to some form of peace.  So today was a good day.  Just because ... Christine was faithful and true and she did a lot for Bryant because she chose the moral high road (long story but involves who else, the school system...).... anyway a lot to be grateful and thankful for.  I should add that it was totally chaotic in the class with as many parents as students and somehow, I connected with this woman who knew Bryant.  Made my day Bryant.   xo xo Mommy

Scholarship/Fed Ex-Kinkos

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Playing the Harmonica through the trach :))))  Bryant loved Music ~

Bryant's Scholarship is being handled by TD Bank.  Donations can be made to TD Bank, 2 High Street, New Boston, NH 03070 ~ payable to In Memory of Bryant Paquette.

I had posted about FED EX and some of the issues; am glad to report that they did get in touch with me and I did have Bryant's cards printed up and they gave us a 50% discount.  So kudos to FedEx and thank you!

Oy Bryant.  Mommy misses you, xo xo

How the Muppets Changed our Lives

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This is the cake we had at Bryant's Celebration of Life.  Anyone who knows us, or more specifically Bryant, will know his intense love for the Muppets and Sesame Street (Disney too!).  Well today, I went to see the Muppet Movie with Bryant's surviving sibs, Julia and Liam, Bryant's Dad, Bryant's Aunt Lori and cousin.  I was not sure how I would react, pretty sure it would be emotional but instead, I was totally enthralled by the movie.  I cried myself silly at Toy Story 3 thanks to the opening song and video montage in the movie ... but the Muppets was different ... here's why.

The beginning of the movie introduces us to a new character, "Walter" who I would say is a thinly veiled Bryant, at least in my World.  So  Walter grows up loving the Muppets, even when they aren't popular with everyone else.  Walter does not age, while his brother (not a Muppet) does age and becomes a man, pre-occupied with his life as an adult (see the connection here .....)   ?     So they take a trip to visit the Muppet Studios in California (strangely enough I must insert here the fact that the CF Convention is going to be in CA this upcoming Summer which I am planning on attending with the family - Julia is plotting out the trip).

Last week, at the Candle Lighting, as I blogged, I had a huge Revelation / Epiphany Moment about Bryant and how he continues to be part of our lives, if only I can "see and listen" to the direction instead of being stuck in grief and anger and sadness.   The movie plays out in typical Muppet Fashion and I have no doubt Bryant would love this movie.  At the end, though, is the pivotal scene, where "Walter/Bryant" must make a choice, to stay with the Muppets or go back with his human family.  It's really a great moving type scene, at least form my vantage point, and seeing how things do shift and change, but even though that's a movie and mine is real life, I see Bryant did make the choice, albeit not completely without sadness and conflict, but the choice did not involve leaving us entirely.  And that is clear.

So we begin to plan our cross-country California Adventure, complete with a Disneyland visit and again take pause to "listen" and try and move forward WITH Bryant.  xo xo Bryant I miss you but I know you're near <3   Fly free Beernuts!

Miracles? All around us...

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I forgot all about posting this since it happened so long ago and while you were alive.  Probably one of the strangest things to happen to us.  As I have blogged before, your survival and birth are nothing short of miraculous, really beyond medical explanation.  Obviously, once you were born, many medical interventions were taken (including surgery, the trach, g-tube and life support).  But in utero, your survival is almost miraculous because it defies any other explanation.    I won't get into the technical medical stuff ... because I am focusing on the other miracle...

We were driving back from our DisneyWorld trip.  Lynne & Don and Family were following us.  We had left the Resort early, in hopes of getting a good start on the trip back home.   We went to Dunkins to fuel up on caffeine and then we got on the highway near the Route 4/ 95 merge, which is heavily traveled.  By now it was around 8:00 a.m., peak travel time, not what we had hoped for.  We were in very heavy traffic, four to five lanes wide, basically bumper to bumper.  That's why we didn't see it coming.  Suddenly in front of us was a "boat seat" (we would find this out later) but in any event, an object was in our path and daddy swung around it to avoid it.  Lynne and Don, never saw it coming either.   Horrified, I knew they would be killed, there was no time to react.  Coming over a crest of a hill with 18 wheelers and other traffic all around us, I screamed NO and said "Oh My God, I am going to watch my sister and her family die".  It all happened within a second, like life flashing before your eyes and I looked in the side view mirror to see Lynne in a full 360 spin as they hit the seat (wood) head on.  I knew they would be killed instantly because there was so much traffic.

What happened next, I will only one day understand, but definitely not in this 'life time'.  I could not bear to look and continued my shrieking and Daddy said "no no ~ they are okay" and I looked again and there was Lynne's car in the middle of the highway, all alone (as we were) and she was able to correct the spin.  We all pulled over, still not sure what we had hit. I expected many other people to stop and as I exited the van I realized it was quiet.  Almost dead quiet.  An eerie quiet that I have not ever heard again.  Lynne & Family pulled up behind us, in the breakdown lane and I was almost shocked to see no one around us.  Suddenly, a car pulled up behind us and I was like "FINALLY!  SOMEONE STOPPED" even though in the moment I didn't realize there were no cars .... we were completely alone.  So I said to this person who stopped, "DID YOU SEE IT" and the person looked quite puzzled and said "yes of course I saw it, I am the one who dropped the seat".  The man was pulling a boat and apparently the boat seat had become detached.  So this person had time to continue on to the exit, get off, get back on the highway and pull behind us.

Once we realized he was the one who dropped the boat seat and no one else seemed to be around, while just moments before we were in bumper to bumper traffic, I glanced over to the crest and like a wave, cars began to pour out ~ as had been the case all morning.  We called the Police and it took them around 45 minutes to come.  When they arrived, the Police Officer informed us that usually the calls along the highway were fatalities and that's why he didn't come right away ....

It didn't dawn on us what had happened because we were so freaking nervous, high on adrenaline, thinking we almost all got killed.  Our van smoked from the pieces of wood stuck within the engine ... apparently this guy had a thing for solid wood boat seats.

This is something I will never fully understand, what happened that day?  Where did all the cars go?  It is impossible that there were just 'no cars' because we were in heavy traffic.  And once we were on the side of the road (breakdown lane) and the guy came back (which means he had to have gotten off the highway and then back on, how much time would that be) and during that entire time, no cars went by?  No trucks?  Nothing, just a nice serene quiet highway?  In the moment, it seemed deafeningly quiet - almost a bizarre sound I have never 'heard' before, more the absence of all sound.

It really makes me wonder what happened?  And why it happened.  And realize that miracles are something beyond understanding.

xo xo Mommy

Quiet & Stillness

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Bryant ~ I think you would be quite pleased with the past few nights ... Julia played her clarinet in the Band Concert on Tuesday and her Cello (above picture) on Wednesday.  I also went to a Dinner with High Hopes on Tuesday night (tough juggling the two but I did ok!).  I think you would be proud of the progress so far ...

Lately the night have been a bit better.  Still no super good dreams but the nightmares have let up.  I hope that's for good because I will not miss them.  The nights are still by far the hardest, but I do think my Anger is being to subside, maybe I hit an all-time high, not sure, we shall see.  Baby steps.  Sometimes in reverse.  A lot of falling down.  Getting back up.  Some days, just plain staying down and letting those emotions have their say as well.

All the emotions do seem to 'speak' to me, the issue, which is quite important, is listening.  As everyone knows, I am not great at listening, much better at 'doing'.  But I think now is the time for quiet reflection and listening. I am considering a 24 hour meditation, perhaps over the Holiday Break.  This will require a quiet place for me and no interruptions.  Much easier typed than done I am sure . But I do think I am in great need of quiet and stillness now, to listen and perhaps, get the answers to my endless petitions.

I have never really found peace in quietness; but I have never had to.  Life with you was out loud, all the time, no stopping.

 So now, it's a strange thing for me to even contemplate the reasonableness of this.  I have made multiple supplications and rants, raves, screamfests, and am ready for the answer(s).  Not really sure if I will necessarily agree with the answers, but they are worth listening to ... and perhaps may send me in the direction of further questions for more searching ... I am sure it's an on-going process.

Perhaps the deafening pace at which I am going is not sustainable (I am pretty sure that is Truth) and that in order to continue along this journey, I need to select a path.  I feel like I am jumping from here to there on different paths without really going anywhere.  All the words bounce around my head, dancing with a frenzy that is sometimes, more often than not, loud and confusing. I try and focus them, and try and settle them, but it's almost like they just break free and run amuck in my head.  Generally it's because I am talking to myself in my head and answering my own questions, which is not working out well.  Therefore, the meditation.

Christine has been so helpful.  She has always been a "do-er" more than someone who says a lot.  And I am thinking that perhaps I can reflect that if I really work on stilling myself, at least temporarily.  You were also a "do-er" and I was able to reflect your love and goodness ~ it was able to at least somewhat tame my inner craziness with the endless words and super-highway in my head.  The emotions go up and down, from euphoric at times to utter despair and sometimes all within the same hour, never mind day.

So I will let you know how this works out.  It is finals week and I am straight out with that.  So hopefully after this weekend I can begin a new line of study into quiet reflection.  Julia is amazing with the Cello Bryant and I know you would have been with us, front and center at the Theatre at the High School, applauding the show.  You loved music and it's really a tribute to you when I hear the beauty of it and see it personified within your siblings.  We all miss you so much ~ and you are never far away (if ever away at all) from my thoughts. 

Love you xo xo ~ Mommy

Candle Lighting & Greater Understanding

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Wow.  Yeah.  So tonight was the Worldwide Compassionate Friends Candle Lighting.  Around the Globe, 24 hours, candles glow for the lives gone way too soon.   We were trying to decide whether to smile or not smile for the picture, it seemed kind of strange to smile and then also strange to not smile and there's not an in-between (although our faces probably communicate the confusion pretty well).  It was an amazing experience.   Our particular Chapter's Candle Lighting had about 700 people or so.  It's just so - beyond words really - to imagine that many children gone.   Everyone has their story, wearing their pins / photos ~ sharing stories, laughing crying.

Well for me, it's been rough ~ I have continually posted about the issues with Anger.   Really pretty much just because Bryant isn't here.  Obviously.   But the life we had with Bryant has shifted and I now realize that is a choice.   All of my posts talk about what Bryant taught and how he lived and how I need to pay attention to those lessons.  Well tonight ~ it became really clear to me what needs to happen.

Bryant's life was a gift.  The fact that he lived at all, surviving the pregnancy and then all the illnesses and dire predictions is just nothing short of miraculous.  I always made sure my foot was on the pedal - to the medal when it came to Bryant, because we had to make the most of the time we had.  I knew his life was a precious special gift.  Bryant's life took us in all kinds of directions.  Definitely places and experiences that I never would have had nor imagined had he not been a part of my life.   I've said this before too, I shudder to think what I would be or who I would be had I not had the Grace of God right there in front of me for 20 years.

So here's the Epiphany of the Day and hopefully for the future.  While I grieve the Loss, I also let the grief win; I let the horrible day that Bryant left us physically reign wild.  I am angry, mad, pissed ... and that can consume someone.  And after all the lessons and all the places ... like Dr. Seuss "Oh the Places You'll Go!"  - Anyone who knew Bryant knew he loved Dr. Seuss.   Because of Bryant's set of life circumstances, he led us to incredible wondrous places.  So there I am, sitting at the Compassionate Friends Candle Lighting, crying, grieving ~ but listening to the poems and other readings and I realized, you know what?   Here I am with three amazing women!  Two are my own children, Emily and Julia and the other, Bryant's nurse Christine, who is one of my most trusted and best friends ~ Bryant brought us together.  And here we are sitting together, grieving our Loss.  But in the Loss, there is the Gift, that which IS Bryant's life and his legacy.

During Bryant's life, we advocated, we filmed video / commercials, we did all kinds of things and I will tell you, it was powerful.   Experiencing life with Bryant was always amazing.  Even when he was sick; life was amazing.  And that's when it hit me, he is STILL bringing me places, having me meet people, leading me.  The next Compassionate Friends Conventions is in California.  I thought it would be awful and depressing because Bryant never got to go to California (never would tolerate the plane ride).  Then I thought, but he is taking you there, don't you see it?

The words bounce around my head and I try and catch them and make them form into something concise that will explain what I experienced.  I think I have made a step forward ~ with Bryant ~ and with my family to understanding that Bryant can continue to exist and be a part of our life in everything we do because we are who we are for knowing him.  That isn't ever going to change.  There is no going back and sometimes that's hard in itself.  But to embrace it, and to understand how much there is still to be offered by Bryant ~ wow.  It was pretty amazing.

So perhaps I am emerging from the Anger.  I tell you, that in itself would be miraculous thing.  Just the other day I blogged about how I am perpetually stuck in Anger.  But tonight, even with the sadness and the grief and seeing all those beautiful children flashed up on a screen, knowing their lives were cut short, I understand that Bryant's Life continues to have meaning if I allow it to.  Or I can screech to a halt and stay stuck..... saying that it is awful that Bryant isn't with us, he can't go to California, or Paris or anywhere we may go.  The thing is, that's not true.  He can.   He is in all of us as are part of him.  So begins the Journey WITH Bryant as an intricate part of our lives.  I can't wait to see where he is going to take us :)  Let the adventures continue Bryant!!!!  Love you xo xo Mommy

Amazing Grace

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Last night, I was having some ear pain, nothing much, just annoying.  Decided to try peroxide.  Worked okay, they are still kinda clogged, but it's that time of year and everyone is sick it seems.   I think the tenant above the office is sick.  Julia and Liam have been sick for weeks and Lilly is sick too.  And I started to think about you and how I'd be freaking out right now hoping against hope that you would stay well and not have to get sick.   Every Winter, every illness in the house, you'd get it, no matter how much bleach I used, no matter how hard I tried ~ but I was on it and tried to make sure you were comfortable.

I used to get this "sick" feeling in my stomach .. I'd know.  You were starting to get sick. I would hope maybe it would be an easy one, that you wouldn't need life support or other major interventions.  I dreaded if you got a fever, would you so into status (non-stop seizure)?  Would it happen at night?   I was so happy, delirious almost when we got the cough assist machine.  You loved it and you'd ask for it ~ "I need to cough" and I would oblige :)  I remember sitting by your side, watching you breathe, waiting for the Tylenol or Motrin to take effect, break the fever.  Waiting for your head to have sweat on it, meaning the fever broke.  Dry skin was a bad, bad sign ... I'd watch you breathe, silently counting in my head - is he back near baseline yet?????  I would check your SA02, adjust your oxygen, get the CPAP ready, call the doctor, start our protocol of steroids / antibiotics - 1/2 strength feeds ... the whole drill.  It's still as clear as day.

So I was driving home, feeling kinda sick, wondering if I am getting a cold.  I thought of all the times you were sick, when you were small and couldn't tell us.  The time your ear drum perforated and pus came out.  You were so tiny.  And the time your g-tube migrated into the pylorus, causing your stomach to become distended, causing you to sweat profusely ~ then it starts Bryant.  The anger starts to swell and I want to scream.  Even right now, I had to stop, catch my breath.  Crying as I type.  Why did you have to go through so much?  25 operations?   Drowning in your own saliva for 2 years.  Enduring one procedure after another.  It's maddening Bryant and I am so freaking pissed I just sometimes do not know what to do.  When you were here, it was easy.   We would get through another storm and you'd be back in the saddle in no time, whirring around in your wheelchair, causing mayhem, laughing, smiling - you were Amazing Grace.  I was allowed to see the infinite beauty of God and of Love ~ the amazing spirit.

On the one hand, the thoughts of you sick and suffering are now almost too much to bear.  I think of your body, laying there, looking so peaceful, but knowing you were gone.  Daddy and I trying so hard to bring you back ~ and then having to see you at the Funeral Home.    Sometimes I wonder why I'm not completely insane, although some may argue I am.  I know I am completely angry.  Just sooo soooo angry.   You were never angry.  And it's not because now that you're gone I only remember the "good times".  You just weren't angry.  You were, Amazing Grace.  In my life.  In the lives of your brother and sisters.   You gave 100% ~ all the time.  You loved life so much, even with all you had to endure.  You'd smile and tell a joke to the staff at the hospital after being brought back from the brink of death.  And that's not an exaggeration. I remember it all Bryant.  The time you had chicken pox and had a fever of 107.  Incompatible with life!  You were in full status for over 2 hours.  Finally after drilling into your shins and icing you down, you stabilized, they called the med flight and off you were.  Comatose for days, yet you would smile and then you signed "LOVE".  The Nurse nodded to me, she told me "I'm glad you got to see that" her smile only briefly there, for she thought you would die soon.  Your liver panel was awful.  Nothing was good -  you had been to sick.  And then you were awake.  Slowly at first and then, as if nothing happened.  The doctors befuddled.

Oh it happened again, time and again.  Dramatic stuff.  The time you spiked to 107 again and you were hypovolemic.  Transferred again ... I rushed to your side - I saw the doctor in the hallway.  He said to me "Oh you've lost weight, you look good".  I thought he was insane and had the wrong person.  My son was near death.  Surely he thought I was someone else. I didn't bother to chit chat with him, it was 3:00 a.m.  Then I heard laughter ... a male voice. HA HA.  And then I heard you.   Apparently you had decided to tell jokes to the Respiratory Therapist who was hooking up the life support / ventilator.   But you wouldn't need it long.  You were fine the next day once they got fluids on board.  Who can do that?

And the time we rushed you to Boston Childrens.  You were so sick.  Laying in bed, sick watching movies.  We always brought your VHS and then later DVD'syessss...." and thus began a friendship between you and the Spanish-speaking personnel who all came in to see this wonder boy who spoke Spanish and English on a computer generated voice (computer).   It was like a party in your room all the time.

I am not crying now, I am laughing to myself, picturing you.  But it doesn't last long Bryant.  The Anger continues to consume and control me.  I do not understand why you had to go nor why you had to endure any of that crap for 20 years. It makes me so furious.  But you never missed a beat.  You'd get well and we'd go on, our trips to Disney and all over.  Always living on the edge, always loving life. 

Lately the orbs have become more intense.  Purple ones.  At Peace with God. I do a lot of praying and quit a bit of bitching to God.  I wonder how he felt when he had to watch Jesus die.  Actually, I don't wonder, because I know.  I had to let you go ~ and it was unfair.  The purest most beautiful person ~ to watch you suffer for so long - but also to watch the wonder of life that was in you.  Amazing Grace, Amazing Spirit.  You were one with life.  You never put any conditions on life.

I get lost sometimes Bryant. Just lost and drifting.   The thoughts of your suffering become overwhelming and the anger takes over.  It was such a small part of your life, you were much bigger than that, larger than life almost.  I've posted about that before.

It's hard to grasp Bryant.  The "Why" of it all.  And I pray and plead for Amazing Grace.  xo xo ~ Mommy

Platitudes & God

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Platitudes.  The Dictionary Says:   Flat, dull, or trite remark, especially one uttered as if it were fresh or profound.

The one I really hate?   "God will never test you beyond what you can bear.  He knew you were strong so he gave Bryant to you."

Usually they then stand back and seem to appear proud of the profoundness of this Revelation, which is nowhere to be found anywhere in the Bible.  Nowhere.  I believe most people utter it 1) because they've heard it said before and 2) they think it means 'it' can't happen to them because they are not strong.  It's like a reverse compliment.

Any of us with children who were born with severe medical issues would have traded places with our babies in a heartbeat or even given our lives so that our children would not suffer.  And any of us who have lost children to death would also change places with them in an instant.  These deals, however, are not offered.  So we carry on and do our best.  The thing is, this didn't really "happen to me" as much as it "happened to Bryant", my son.  I did not go through 25+ surgeries, have a tracheotomy in my neck nor a g-tube in my stomach.  I did not endure countless hospitalizations for  pneumonia or have IV's drilled into my shins without anesthesia during a 2-hour seizure.  But I did watch.  And I lived it WITH Bryant; but he was the one who had the strength and he was the one who taught.

I believe in God, don't get me wrong.  Perhaps I know the Bible a little too well to agree with such a nonsensical quote.

1 Corinthians 10:13 = There hath no temptation taken you but such as is common to man: but God [is] faithful, who will not suffer you to be TEMPTED above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear [it].  (King James Version).  The word is "tempted" not "tested".  And even so, one wonders what happens if you 'fail' the test and you put the child in an institution, as was the case in the earlier years (State Institutions commonplace) or if you somehow otherwise fail.

Psalm 127:3  Behold, children are a heritage from the Lord, the fruit of the womb a reward (King James).  Again, many would agree our children are a gracious and generous gift from God.  Even the damaged ones.  Yet, for some reason, while the platitudes abound about "God" being the Mastermind of these children; Society does not seem to reflect that, except when they utter the platitudes to us and then walk away .... leaving us to feel slightly confused and bewildered on how they know about our "strength". 

True, there are many understanding and empathetic people who do understand (these are not the ones usually uttering the above platitude).  They pitch in and help out.  They get it.

Ecclesiastes 9: 2 ²All [things come] alike to all: [there is] one event to the righteous, and to the wicked; to the good and to the clean, and to the unclean; to him that sacrificeth, and to him that sacrificeth not: as [is] the good, so [is] the sinner; [and] he that sweareth, as [he] that feareth an oath.   (King James)  this basically says good and bad come to all; both good to good; bad to bad; good to bad; bad to good ... another version puts it "Time and unforeseeon occurrence befall us all".

To somehow imply that God chooses people based on their strength is kind of curious.  I do know that the Bible also says "In your weakness, strength will be revealed" but that means that in our weakness the strength of God is made known, not our own.  God gives us strength.   Here it gets kind of murky when you deal with any type of platitude because you can spin it any way to make yourself feel good.  But at the end of the day, God did not make Bryant's chromosomes do the funky dance because God knew I was strong.  If anyone believes anything in the Bible, they must believe the fundamentals of the Bible - God's Sovereignty and how it was challenged - "Through one Man (Adam) all have sin; through one (Jesus) all are saved" ~ we all have sin / thus imperfection.   Good and bad people, we all inherit this "sin" or imperfection.  So by telling me God "chose" me and that was because of my "strength" that does not somehow let them off the hook of "it" happening to them.  We do not not control that; unless we have prenatal testing and decide to interrupt the process of imperfection ever happening to us.  And some do that; and some do not 'hanlde' it, many have depression, breakdowns, marriage break-ups, putting the child 'away' etc.  But this happens to regular children as well.  Perfectly healthy children are abused, neglected and worse.  Why?  Did God know their parents were weak so he sent them a perfect child so they could damage it?  Huh?

If you've read anything on my Blog, you know I do believe Bryant was a Gift from God.  Not because of his disabilities, but because of his spirit and his soul.  His love of life and the way he handled life with grace.  He taught me.  My other children teach me as well and I shudder most times wondering what I would have been as a person without Bryant.  Without knowing that type of pure love.  What I do know, though, is that not everyone accepts their "gifts" and while it is my opinion that Bryant is a gift; I know that God does not want any suffering for his 'children'.   He does not take any pleasure in sickness or death.  That's why Jesus came and why Jesus healed.  He didn't tell the blind "Hey it's cool pal, God made you like that.  I am not going to restore your sight".  Nope.  The Bible tells us that he felt pity and made them well.  The Blind, the Sick, the Deaf, anyone who asked.

God does give us the strength, many of see the determination in our childrens' eyes and are guided by that and by the knowledge that God will grant us strength.  I believe, for me, that God was and is with Bryant.  I believe God allowed me to see the incredible wonders that Bryant brought to our lives while he was with us.  And for all of that, I am thankful.  I am not thankful, nor have ever been, for the platitudes of those who have no idea what they are talking about.  Sometimes it's better to say nothing at all.  Don't admire my strength because you know nothing of it.

This continues on now with Bryant's passing.  The platitudes come and sometimes they are just so annoying.  I think what happens is this disconnect, almost like an isolation of knowing places and feelings and experiences most other humans will never know.  And there is no way to explain it or communicate it without them having to actually experience it.  Which is where perhaps the temptation comes in.  The temptation to slap someone in the head ... you know that kind....

But that's another story :)  For now I am thankful to God for Bryant and my kids and my Life.  Maybe I should consider myself "chosen" ~ and sometimes I do =)    Always thankful for Bryant, xo xo Mommy !!

This, of course, could be an

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As a little sidenote I should also say, I am happily awaiting a 7:00 Skype as I help organize and plan a wonderful reunion for the C22C family, which I am still a part of even though Bryant has passed.  No one in this group needs to be the "star" and we all are hoping for a wonderful time for the kids and the big kids ;) at Disney.

The Spirit of Giving

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Happier times ~ Bryant with my dad (Grampy) and me during our "Family Day" ~ December 2008.

So it's the Holidays.  We never did the "traditional holiday" but instead did / do Family Day which happens to coincide with the regular Holiday Season (we celebrate our Wedding Anniversary/Family Day - December 20).  So we are out there with everyone shopping.  Plus, of course, some of the deals are just too much to pass on.

I am always involved in some way with my kids' school.  Always a Room Parent or at least signed up for one party.  This year I have the December Party.  It's actually fascinating to me how anal parents get about a one hour party at school for the Second Graders.  To me, it's just the typical thing, arrange who is bringing food, gift exchange, games.  The schools are toning things down and prefer to have healthy snacks and shorter parties (versus all day celebrations) particularly as the kids get older.

So I sent out an e-mail informing everyone of a thought the teacher and I had.  Maybe we could do a donation to the Humane Society instead of the traditional "under $5 gift exchange" where the kids buy something "under $5" (basically useless plastic that is broken before it gets home) and instead do the party but have the kids buy something for the Shelter or give a monetary donation.  Pretty simple, straight-forward and the kids get to help animals, get their picture and a story in the local newspaper.  It's all good!  Or not.

Most of the parents on the list are fine with it.  But there are always the one or two who have to be the "stars" and have to have the focus on them and have to make a big deal out of something so simple and easy and manage to ruin the spirit of giving for everyone because they are so selfish and self-centered.  One in particular wants the job, full-time of party planner for the school for all the Holidays.  I have no freaking idea why anyone would want to do that but I guess it's some sort of unmet need emotionally where the parent feels by doing so, they are therefore "important" somehow.  To me it's just work and I like to volunteer for one thing so my kids know I am involved and around but I certainly do not want to be the "star".    Another one, a friend of this "star parent" decides to e-mail me as well and tell me she needs to know what we are doing "sooner than later" because she usually has her shopping done by now (this was last week by the way, not even in December yet at that point) and she does not wish to be out shopping the week before Christmas.

So I e-mailed her back and told her it was well under control  and I have no intentions of having her shopping so close to the Holiday and actually she's under no obligation to do anything anyway.  She e-mails me back telling me I am rude, bla, bla, bla.  Really?  So I e-mail her back and inform her I am not rude, just answering her moronic question(s) and I am busy also trying to coordinate the Memorial Scholarship for my son who is dead and get ready for the Candle Lighting.  My other son, Liam, Bryant's brother, is going through an intense period right now of anxiety as well (due to the passing of his brother) so I am trying to deal with that as well as you know, the regular family stuff, and facing another year without Bryant for Family Day.  So maybe she should count her freaking blessings.

I cannot wait to meet this crazed person.  I want to ask her what would be so stressful for her to take it out on me?  But I actually don't really care.  I guess right now I am too busy trying to decide if I can make it through the Muppet Movie that my kids want to go see because the Muppets were Bryant's favorite.   Thankfully it's dark in the theatre and while I cry through the movie, maybe no one will notice.  I see all the stuff coming out and how much it would have thrilled Bryant, he loved technology, so I buy the iPad with much sadness because only days before his death, we were at the very MAC store where I purchase the iPad.  And I struggle to figure out what to do about Liam's anxiety over the death of his brother.  Meanwhile, back at the Farm, this other parent bitches about being done her shopping and not wanting to be put out at all by anything.  Wow.

This picture is of Bryant shortly before his passing.  We were there to get a new iMac for him :(

Bryant would laugh.  He would think it's funny that anyone could be so anal and obnoxious and he'd move on.  That's what he taught me.  But still, even though I know this, it bugs me that people think they can talk to other people this way or treat them this way over a stupid party which is well within control and will go off without a hitch.  And we will give back to our community and help the Humane Society.  All the OTHER parents think it's a fantastic idea and can't wait to be involved and support this.  None are bitching about anything.  Except this one (and her friend) who must be the "star" of the show.   My life will never be like that.   Bryant was way too good of a teacher to allow that.  But sometimes I do wonder what it's like to be that shallow and anal.

So now I'm ranting.  Probably because on the heels of this Holiday Season comes the dreaded month of February through March.  Bryant was born 2/1/89 and died 3/21/09.  20 years.   So basically December through April are a major suck.  We are making plans to avoid a repeat of the "gut punch" situation I went through last year.  Now I know what to expect and will take proactive measures to do something positive.  I have Bryant's Scholarship going .... we are going to be ramping that up in February / March and hopefully have a nice Memorial Scholarship for a high school senior who is interesting in pursuing some sort of change / advocacy in the future.  We need more people who are more concerned with positive energy and the love of life that Bryant possessed so easily and naturally.  Bryant made change, he made things happen and he made life so much better.   I am trying to be more like him; trying to realize there is more good than bad; but man the bad really bugs me.  Even over a stupid one hour party.  I see Bryant laughing, waving ~ moving on - not worth his while .... it was so much easier when he was here to laugh.  I miss you tons Buggy ~ Mommy <3 xo xo