March Madness Dream Intensity & Moving On

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Well here we are Bryant, on the brink of 3 years without you physically here. Of course, you are with me mentally 24/7, 365.  I have to say that the grim warnings of 2 years being worse than year 1 have been true in my case. It's also said that in Year One - the grief is for the loss, grieving the child, you Bryant - but the second year is grief for myself.   That I find is partially true because for a good portion of Year 2 I have been unable get out of my own way.  However, even through all that, things have become a little more 'clear', if you will, and I am working through it.

The truth is Bryant, I am "moving on" but you are coming with me.  I had an Epiphany of Sorts during the Worldwide Candle Lighting.  During your amazing life, we were always on the go, somewhere new and exciting and fantastic. Well after you passed, I couldn't imagine going anywhere else ever again and being happy about it, because you would not be with us. So as I sat the Candle Lighting it became clear to me that you have other missions for me ~ just as when you were alive, you still continue to guide me forward.  People always say how strong I am or this or that, and how we did so well raising you and all this stuff, and I just chuckle to myself, because it's impossible to let anyone know how much the reverse was true. You were and are the one who carries me.

Bryant's Memorial Plaque and Candle from the Compassionate Friends National Candle Lighting December 2011

A lot has been going on this month ~ they also say good things happen in three's.  That has certainly been the case so far and it has made this month a tiny bit more bearable. Still, I am counting down to Year 3 - March 21st. It falls on a Wednesday this year, you passed on a Saturday, so it's kind of like I am in grief again BOTH weekends.  This thought process enters my head every Saturday, but it's much more intense during March.  Yesterday, which was Saturday the 17th, we were at Julia's Concert. She plays the clarinet and the cello.  The concert was at the High School and I could see your "spot" where the music department always had reserved for you ~ your love of the Arts was unmatched, but apparently shared with your sister. I was not sad though, in fact, a very calming feeling was over me. Normally, that would trigger a panic attack at least, being in the auditorium you loved so much.  But as Is sat there and glimpsed at your "spot", I kind of knew you were there watching your sister and being so proud of her.  You and she are my music prodigies :)

All of this is part of "moving forward" but with you at our side.  We are planning on going to the Compassionate Friends Convention in California. That is literally across the country for us.  Again, I wouldn't have dreamed of doing this just a few short months back, but as I sat at the candle lighting, I could sense you wanting me to continue on, in advocacy and healing, just as was the way when you were here physically.

Of course, God goes a long way in this too. He puts up with my rants and meltdowns.  I have been incredibly blessed the past few weeks to have almost night-long dreams of you. They are basically you and us just doing regular stuff. This has been the greatest gift because it puts me almost back in time with you so I don't forget any of our life together, not that I would, but that's a huge component of the fear parents have when they lose a child.  Iwake up happy and can recall things so clearly.  I am almost to the point of a normal sleep pattern.  That's huge.

Bryant with a friend at a performance at the High School ~ he loved the Arts.

I guess the part that is hardest is the acceptance part. I have accepted it at least on the cognitive level. You weren't supposed to live 24 hours and we had 20 incredible years with you.  You were nothing short of a miracle in all things ... just surviving was one and then being able to do all that you did and being able to help other people and make changes in State Law and advocacy .... that's more than a lot of people do in a lifetime. Which is why the Epiphany was so striking ... it's like I knew instantly that you want that to continue. It's much harder with out you here though because people always fell in love with you :) Who could not? Your clever jokes, endearing smile and the huge I LOVE YOU sign ... for me, well I am not quite so lovable.  But that's okay, because you loved me.  And your siblings love me .... and Bryant they miss you soooooo much.   Again, however, I can see your influence in them ~ just as they influenced you. It's a beautiful thing.

The other thing about your passing - it's all without my consent or control.  It's was 100% completely out of my control and definitely not with my consent. But here's the thing ~ how I respond and live now IS within my control, at least some of it and that's making me see and learn just how much you have given me and guided me and just how much God is willing to put up with me and continue to show me incredible things.  I have already blogged about my meltdown with God and how I just lost it and then, amazingly, how God showed me peace, kindness and understanding.  The scripture, God is Love?  I felt that.

So the Journey continues. I am certain to Blog again on Wednesday and then again next Saturday.  So much going on Bryant, in such a wonderful way, because you truly are everywhere.  Going places like the High School Music Auditorium made me incredibly happy because that's where you were so happy and alive.  Another miracle.  You are everywhere and that, in itself, makes me wonder ~ as Dr. Seuss so aptly wrote "Oh the Places we'll go".  After you passed I could not imagine EVER going anywhere. But you have pushed me and taught me and now I can look forward to the places we'll go ... because you are coming with us.

Love & Hugs Bryant xo xo

Generosity of Mechille - The Bryant Paquette Memorial Fund

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My friend Mechille and her son.  Love to them both! 

Donations can be made to "The Bryant Paquette Memorial Fund" c/o TD Bank, 2 High Street, New Boston, NH 03070

https://www.facebook.com/home.php?ref=home#!/groups/183798818367834/   (Bryant's Facebook page)

http://www.drcnh.org/skillednursing.html   (Article just published / Bryant advocated for the DRC and they asked if they could use his pic for a story they were running - pictured is me with Bryant).

So yesterday I got a message from my friend Mechille.  Her birthday is Friday and she thought it would be nice to include Bryant's Memory with her Special Day.  I was so incredibly happy and humbled by such a gesture.  Bryant's life was so full of life and love that setting up a Scholarship in his name was just the obvious route to go.

A graduating Senior from his High School, someone involved with the Music/Drama Department (Bryant's absolute LOVES) are first considered for it; but they will be recommended by the Department to apply.  The other 'requirement' we are looking for is someone who wants to make a difference through Advocacy.

When Bryant was born (see pics below) I did not want to become a victim or a taker.  I knew we would need to learn and accept help; but it became our goal to give back.  Bryant's life was always about Love and Advocacy.  He so enjoyed music as a little guy and then as he got bigger he really showed us his love of music, movies, etc.  The Music & Drama Department(s) always had Bryant's special spot in the Auditorium for his wheelchair, Reserved for him :)

But Bryant also was an advocate for so many things throughout his life.  He was particularly active in Advocacy for Persons with Disabilities.  So it is with profound thankfulness that we share in Mechille's Special Day.   I love you Mechille and I know Bryant is smiling his big smile at you!!!!

Please feel free to look around the Blog at Bryant's life, particularly older posts.  Bryant had this Blog for his many activities when he was here with us physically ~ and I have taken it over to keep the Memory alive.  I am humbled by Mechille'sLove & Generosity <3

xo xo Love you Bryant ~ ~  ~ Mommy

Bryant's Life ~ a few pics

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About two weeks old.  He spent four months in the NICU; they only sent him home because there was 'nothing left to do for him'.... he lived for 20 years =D

Miss you Bryant.

Anger & Arguing at God

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Last night was interesting.  As I have Blogged before, I have frequent, lengthy conversations with God as of late and sometimes they go on for quite awhile.  Last night I was tired-ish, although for some odd reason as soon as the lights go out, metaphorically speaking and sometimes literally, my eyes and brain will not shut down - quite the opposite.

Insomnia is pesky.  It's miserable and it's something most people experience.  Chronic insomnia is unbearable.  Since Bryant passed, my bouts with it have gotten worse and I have come to realize I cannot take medication forever, nor drink it away ~ it's something I will have to gain control over.

Generally, my conversations, with sometimes cantankerous have been mostly cordial and so forth with God.   Last night changed all that.  I haven't yelled at or, God forbid (excuse the stupid pun) sworn at or to God.  That is until last night or more accurately early this a.m.

I had been waiting to hear from a certain someone via text before I could drift to sleep and had dutifully swallowed every OTC sleeping pill you can find.  I shared some stuff with God and then, after receiving the text that all was well, finally drifted to sleep - about 1:00 a.m.   Then, I found myself wide-awake.  Looked at the clock to see just how much time had gone by and it was freaking 1:20 a.m.

Seriously?  This is sleeping?  I was so freaking mad, angry, pissed whatever I just exploded.  At first I considered doing something useful with my newly acquired skill of only sleeping for 20 minutes, like maybe coming on downstairs and doing my homework.  But I was so mad and so wide awake and so I AM NOT GOING TO PUT UP WITH THIS STINKING MAD frame of mind that I swore.  A lot.  In a profanity laced discussion with God - more of a rant per usual but EVERYTHING came out.  I covered all the perceived injustice of it all and why do I bother asking for help sleeping etc .... for 20 minutes of sleep??!?!?!?  I honestly cannot remember what I said and I am not really sure where it came from but it was new.  It came from somewhere new or at least a place I have now chosen to free or release and it felt good.  At first I was trying to control myself, I mean after all I was involving God in this newest tirade, complete with multiple swear words, not really blaming Him, mind you, but sort of kind of in a way insinuating He could be more of a help .....

And this other part just took over and ran smack over the "hey maybe you should tone this down a bit mentality' and it all just came bursting forth.  Afterwards, I was so freaking exhausted, I actually fell asleep on my own and drifted into this incredible World.

The Dream itself was very long. I haven't had one of these in a long time and certainly not one of this depth for what felt like the entire night (or morning, it was around 2:00 a.m. by now).  In the Dream I was on some type of journey and I had a guide.  Shall we guess who the guide was?  Well, in the Dream I got a note, kind of like a Proclamation, it's difficult to describe dreams because a lot it is not communicated with actual words like we do in life and it's a Dream .... but suffice it to say a Proclamation of sorts was made from God to me.  He said to me that Bryant would be my guide in this Dream and that I should really pay attention. 

Surprisingly to me, he wasn't mad.  I'm not sure how I could remember the argument, albeit one-sided that I had just had with Him so recently and then Dream about it but I did.  In the Dream I was aware of my most recent profanity driven rant about sleeping and the fact that I was now asleep and God was telling me Bryant could guide me through the dream. God was rather soft-spoken, kind of like a parent is when the child has just thrown a fit but it's so darn cute that you just can't be mad and you can see that they are over-tired and just plain, flat out, frustrated.   Um .... and perhaps I might have sort of kind of like maybe questioned how a Loving God who likens himself to a loving Father ...... trailing off here because it was a naughty rant.

But see here's what's so great.   I did fall asleep, kind of like a kid who pitches a fit then falls asleep and looks so darned stinking cute.  And helpless.  Which is how I am and how I felt.  And our Loving Heavenly Father apparently knew that.  Maybe He, in his ultimate wisdom has been waiting for a more honest and heart-driven speech so He could answer me.  You know, He can't answer questions we don't ask.  At least that's how I feel because how on Earth would I recognize the Answer if I don't ask the Question ....

So the Dream was full of answers of sorts.  Glimpses perhaps into God's infinite wisdom and the fact that Bryant, is in fact, okay.  In the Dream Bryant took me around to places and situations, and in the Dream Bryant was in different ages and forms.  Some were of him completely healthy and without his 'accessories' such as the wheelchair or trach; and others were of how he was when he passed - age 20.  But in the Dream he was happy and very peaceful and because of that, it seemed to transfer to me as well.  What was fascinating about the whole Dream was God, who occasionally would 'check in' and see how we were doing.

Obviously, this Dream in particular has been very overwhelming for me during today as I continue to remember parts of it and how absolutely peaceful and beautiful and stunning it was.   I wasn't nervous or anxiety-driven or mad or angry or even uncertain.  If anything, I had never been as certain as I had during the Dream about things.  Too bad it's not like that in 'real life' ~ but I considering my attitude pre-Dream I would think I can thank God for his patience and infinite Love and understanding of our Human condition.  I mean He is our Creator and Father, but to experience it and have that time of absolute peace was incredible.  Even if it was in a Dream.  To me, it was more than a Dream but God's answer to me.  Perhaps as illuminating as the Dream was is the fact that I have now come to see - which is that God wants honesty.  Maybe not the profanity - I think I will leave that out from now on; but like I said, something over-rode my desire to not piss Him off to my desire to really actually communicate my incredible frustration and anger and, of course, my desire to know if Bryant is okay .... Given that Bryant was and is my guide, I can say "YES"  =)

I love you Bryant and treasure the time in my Dreams when I see you xo xo Mommy

More Dreams

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The dreams seem to come in stops and starts.  They have started up again, not sure if it's the time of year, probably ... I keep wishing to stay dreaming in them to spend more time with you.  Lately, they are more matter-of-fact and we are just doing our regular stuff and having a regular day and then the dread sets in, and I realize you are gone and that I'm dreaming and I have to wake up.  I fight it.

It's kind of like in that movie with Christopher Reeve "Somewhere in Time" where he sees the penny and realizes he is going to leave and tries desperately to stop but he can't.  I can feel that desperation in the dream as I start to realize it's a dream.

Anyway, today is February 28, and you were due on February 28th.  You were born, of course, on February 1st, four week early but still, it's odd, every Febraury 28th I would think of "how it was supposed to go".  You were supposed to arrive all well and healthy and certainly not sick and near death ... definitely not in the NICU for four months and all the stuff that went with it.

You took us on a very different journey than we had imagined and you decided to start it early as well :)   Today is the second day of our February / Winter Vacation and we went to the Museum of Science.  I used to go there all the time as a kid on MY school vacations ... and it's odd because even though it's always being updated, there are still remants of the old Museum of Science from when I was a kid, including the lobby where  you stand in awe of the World to Come - the excitement of what awaits, new and old, in the Museum. 

We went to the "Lightning Show".  It's exactly the same as it was when we went with you.  Strange how that is.  I stood in the EXACT SAME SPOT I stood with you just a few years ago and I couldn't help but be transported back to that day.  That's seems how life is, we stand in amazement of what's to come and yet in amazement of what has come.  That aptly describes my life with you physically here and now with you not physically here.

It's painful a lot of the time Bryant I'll be honest.  I would have much have preferred just keeping on keeping on ~ we had a good thing and I was just fine with it.  So on days like this, reminded of what could have been or should have been just kinda smacks me upside the head AGAIN and makes me think of all the stuff, bad and good of the many years I was so lucky to have you with me. 

As the kids ran around, I sat for awhile in front of a brain - it was made of yarn, someone knitted a brain - yes true story.  And as the kids moved around the Exhibit of the Human Body and Imaging - it was just amazing to stare at the perfect yarn brain and think, yep Bryant's brain looked absolutely nothing like that.  And yet, he was the smartest person I've ever met.

Yesterday, Liam had a playdate with a kid from school.  The mom of the kid remembered you from many years ago at the Central School.  What she remembered most was the clarity of your eyes and intesntiy of yours eyes and smile.  That about sums the whole picture up Bryant.  You were very wise, far beyond your years and very kind and loving.  And that's what I miss so much.  I am so unlike that.  You were like the purifying force in my life that made everything okay and now, so much of the time, I am lost without you.

And then there are those glimpes of you when I know you really have not left me alone, nor has our God.  He sustains me and continues to put up with my incessant rants and slowly but surely Bryant I am making some ground towards understanding and Grace.  The worst of the worst is coming up with the impending Month of March when you left ... I dread it.  But I am hoping that somehow, God will continue to see me through this as I grasp for gimpses of what is.  Not what should have been or could have been, but what IS.

I love you ~ and I miss you 24/7 365 ~~ xo xo Mommy

Why blame God?

Grace of God ~

In the past few weeks and then again today I have heard this sentiment "Everything happens for a reason - according to Gods Plan" ~ now this would generally be ok for and by me if said person simply SHUT UP after that generic sentiment instead of saying something to completely dispute what they themselves just said.

Case in point. A friend of mine suffered a miscarriage today; and apparently according to someone this was "God's Plan and thank God you lost it so early because it might have had complications".

Apparently, God does not dole out 'complications' and instead kills or causes the baby not to be. Which is odd,considering Bryant had 'complications' and I consider him a Gift of God and a perfection of Spirit. I do NOT consider him better off dead.

Around 8 weeks into the pregnancy with Bryant I had a lot of bleeding which prompted an ER visit The Nurse mentioned to me that it was probably a miscarriage which was "Nature's Way" of dealing with the defective.

Of course, now I take offense that anyone can call any of God's work defective. But the interesting thing is I never told God I would only accept a 'perfect' baby ~ meaning of course a non-disabled or 'complicated' Gift. The issue I have with this whole "GOD blaming thing" is just that. How can anyone who says "everything happens for a reason" have the Gall to question and then add God's thoughts? It's offensive.

Basically this person was telling my friend, your baby is better off dead than being disabled or 'complicated'.

Hmmmm.... odd. But that is how a lot of people see disabled persons. They turn away and feel bad and silently bless themselves for not having that. Yes we are thankful for health but we should be thankful for life and for those who teach us how to live gracefully with life. That's what Bryant taught and I am certain Bryant was not a mistake by God. The real mistake is that people will continue to marginalize anyone who is different and consider it better off that they are dead rather than born ... and I must say it is people like that who are in for a big surprise from God.

Get over yourself I say. Who says that just because we can't see your disabilities that they are in fact not worse than someone else's? And who gets to judge that? We are all here and functioning by the Grace of God. All of us. Those who choose to distinguish who has a "Gift" and who do not are walking a thin line.

Bryant taught me and countless others about love and life. Those who choose to see a disabled person instead of the Spirit Guide Bryant was and is are missing the entire Life Lesson. Those who do see it or have glimpsed it in another, you then know what I am talking about.

Rant over.

Dreams & Getting Closer ("Valentine's" Day)

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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