Clouds & Magic & Signs

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

                                                          BRYANT DAVID PAQUETTE 2/89 ~ 3/09
Hi Bryant.  My mind is going and going and going .... it's like a Thesaurus gone wild.  Plus, superhighways of words / thoughts / feelings.   All expected since your birthday is Wednesday.  Tomorrow, however, is the day I stopped feeling you move and went to the ER.
I Blogged yesterday about grief and stuff but today I am thinking about clouds.  I was out driving around the other day with Liam and he says "Do you ever look at the clouds and see things".  And I am thinking "not anymore" ... but I looked up into the sky and there they were, clouds ... Liam went on to say what he thought they looked like and I couldn't help but wonder how many times you played that game in your mind.  I also made a mental note to start looking at the clouds again :)

I have also decided on a new challenge which is to try and be more grateful for the Grace and Goodness and the Magic you bestowed upon us.   If I remain still enough, I can see so many things.  It's just so hard to do.  My mind is always going and I am working on slowing it down to try and realize the beauty in things as simple as clouds.  Liam's question jolted me back into the life of a child, the time when things seem so new and so interesting.   That's how it was with you, every day, you made us really "see".

As your birthday gets closer, I am always reminded of the chaos that ensued when you were delivered.  Our entire lives changed in that instant and far more than we ever imagined was then put into play.  I remember saying to Daddy "You know, he doesn't seem like a baby" ... trailing off to try and figure out what that meant ... I was a new mom and you were a baby but something was different (aside from the medical stuff obviously).  So we looked at you in the NICU and both nodded, still not entirely sure what we were seeing.... I know now.  You were a Spirit Guide.  Your physical body was in rough shape, to the point that you were not supposed to live 24 hours and when you did that, we were told you would never have purposeful movement.

But you did.  Everything you did was purposeful and somehow you had this unique way of leading and teaching.  You were ever the clever one ~ usually quite amused by my off-the-wall personality.  I distinctly recall your face in the hospital the time the doctor was messing with us.  Daddy  had stayed with you overnight and the Drama was only getting worse.  The Attending apparently thought he walked on water, but I had a different opinion of him ... which caused the final showdown.   And your face.  I remember I walked into your room and the doctor followed and your face said it all "Oh Foolish Man, You are in for some serious schooling ~ My Mother Is Here".  And so it was.  By the end of that day, Administration was involved and the Doctor who thought he walked on water was ordered to offer a full apology.

You might say, in many ways during your life, I was the "backup" to you, a cute little kitten.  And then, riding around looking at the clouds, it has occurred to me now that YOU are the backup now.  You have left me physically, but are all around me.   You left nothing untouched with your 20 years.  The fact that you survived defies any explanation.  There are children born with far fewer issues than you had who never get the 20 years you got; and certainly not the action packed, fun-filled, traveling the country life.   When I am at my lowest points Bryant, I think about you and marvel at what you have set up for me.  I truly do believe you were and are my Spirit Guide and you certainly knew something we did not ~ your spiritual being was closely in tune with all things spiritual, and that I would say is the greatest gift you ever gave to me.

It's hard to put into words what it's like to see it, to view perfection and see the Grace of God that intimately.  I always wondered what it was like in Moses' Day, to see him part the Red Sea or what it was like to see the Apostles and the miracles.... but I don't really have to wonder because it was clearly evident in your daily life.

So, in a couple days, you will be 23.   20 of those years were spent here on Earth with us.   Yet you continue to inspire and touch the lives of the people you knew and those you did not know.  You continue to make me a better person and to try and live the way you did, without hatred, without meanness and without Anger.  Instead, you lived with Grace and Hope and Love.  So to me, that is now my challenge .... to try and continue to keep the memories and vision of your life front and present.  Clearly you carried us for a long time Bryant.  And in so many ways, you continue to.   I have signs and gifts from you all the time.  Yet somehow, it is never enough because I just miss you so much and therein begins the downward spiral.

A life well-lived, with purpose and focus.  I have occasionally drifted from the Life Lessons but your siblings have found ways to bring me back to some type of focus.  Right now it's in the clouds :)

Love You xo xo Miss You and I am sure I will be blogging this week particularly and probably most of March ...

My own personal rip current AKA Grief

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

Yes.  I am writing another entry about waves and the ocean.  I found this little tidbit of information about rip currents, which is my present thought process right now ... my analogy for how things are going in the Grief Department.

Rip currents are terrifying because they catch you off guard: One minute you're bobbing along peacefully in the surf, the next you're being dragged out to sea at top speed. They occur in all sorts of weather and on a wide range of beaches. Unlike violent, crashing waves, you probably won't notice a rip current until you're right in the middle of it.

Well anyone who knows me and my situation with losing my son, Bryant, will immediately understand why that paragraph is so profound.  I did a post awhile back on "The Waves of Grief" and how I almost got myself killed by a rip current in FL.  I was reading on line that rip currents kill more people than hurricanes, tornadoes and lightening storms per year.  Really?  That is freaking staggering.  Good thing I wasn't on a quiz show because my money woulda been on hurricanes or tornadoes.

But these rip currents are just like Grief.  I mean in the beginning, you are so numb to it, you just are almost in a bubble type wrap mentally, at least I was for about the first year.  As it got nearer to the 1st Year Anniversary of Bryant's death and even closer to his birthday, I was about to be schooled in rip currents as they relate to grief.  The dullness of the mental trauma was wearing off and slowly the reality of the horror was beginning to settle in.  Yet it caught me completely off guard.  The next thing I knew, I was on my knees in a full blown panic attack.  I have had a few since then, nothing to compare to that first one until the other day when I was driving.  Now having a panic attack while driving is really not a good thing.   Part of me was taking my pulse to be sure it was still there and the other part was saying "perhaps taking a break might be in order here ..." while my head was on fire screaming this awful horrible (inaudible) scream.  I guess you could say my SOUL was screaming.  That's how it felt.

I have explained the feeling as that of my spirit fighting against my physical body and almost trying to escape.  It's a horrid awful terrible feeling.

Now on to the rip currents.  I am wading slower this time, because in a few days, we will be at February 1st which is Bryant's birthday.  I had gone into labor / hospital on January 31st so for me, the whole event is drawn out longer which means more time being dragged about ....

Then, if that wasn't bad enough, he died in March.  I have also written extensively on that and will again once March rolls around.  Bryant died during the Spring Equinox which is interesting to me and I shall Blog about that in March but for now, I am on the look-out for the rip currents and more importantly what the "F" I can do about them.

I would not categorize my life now as "bobbing peacefully' but there are times when I do let the good happy memories take over and there I am, sort of peaceful, or as close as I ever think I will get to it.   When Bryant died, part of me died as well.  It's kind of like birth, you give birth and new part grows in your heart.  Well let me tell you, when your child dies, part of you dies with them.  Sometimes it's a pretty big chunk of your heart and there are times when my entire heart feels dead. 

Some people will say it's a choice and you can either choose to be miserable or choose to move on.  That is such a load of crap it's almost funny if it wasn't such a lie.   It's like saying "Hey you won't get caught in a rip tide if you just wish upon a star" - you know, hello?  I can't wish away the rip currents anymore than I can wish away the death of my son.  So now what?  Now I have to "deal with it".   Just like you would if you were caught in a rip current.  The advice is this:

Rip currents are anomalous occurrences, but they are born out of ordinary, everyday ocean waves. On the most basic level, you can think of ocean waves as travelling fluctuations in water level. Some external force (usually the wind) pushes on the ocean, creating a swell of water, which is passed along the ocean's surface. The energy of the wave, which may be built up by additional wind pressure, is passed from water molecule to water molecule. The water itself doesn't actually travel; only the energy keeps going  The resulting rip current sucks in water from the basin and spits it out on the other side of the sandbar.

So there I am, stuck in a rip current, stuck in grief or overpowered by it.  There is no way to see it coming generally, and even if I do see it or know it, the strength of it only seems to increase.  Here's what to do in an actual rip current:

To survive a rip current, or any crisis in the water, you have to keep calm, and you have to conserve your energy. If you don't think you can swim all the way back to the beach, get past the rip current and tread water. Call for help, signal to people on the beach and, if all else fails, wait for the waves to carry you in

Oh and the other helpful advice?  Don't go into the water alone.  This is definitely helpful to know in the Grief Arena and I have found that to be true.  I have found some extremely supportive people who I can call or who can call me and just "know".   But the advice of keeping calm?  Conserve your energy?  How is that possible when you have other people telling you to "move on" and "get over it" or looking around like "are we still talking about this?  I mean hasn't he been dead like 3 years".  Yeah that's kind of not helpful.  Sometimes I think these type of people are actually the rip current on top of the Grief rip current.

A lot of us in this awful circle have found ways to move along with Grief and to really grasp that this is not something you will ever fully recover from, at least for me, not until I see Bryant again.   When Bryant died, as he lay in the funeral home, I leaned over and whispered in his ear "My heart beats for both of us now".  Actually, my heart always did beat for Bryant ~ and for my other kids .... that's just how it is when you are a mom to such incredible little people who grow up and become adults.  Bryant did make it that far, but he had so much more time left that should have been his.

I think the lesson I have learned and the reason I compare this to a rip current is that you are never "out of the water".  Ever.  There are times when all is good and peaceful and beautiful, but there is always there lurking, the possibility of being pulled down and under.   I will tell you, that those times are dark, very dark times.  I never knew such awful places existed within the human experience.  And those are the times when you need that helping hand to get back up - or maybe not even a goal that lofty.  Maybe just a helping hand so you can tread water for awhile.  That's actually what if feels like a lot of the time and even that is exhausting.

Bryant loved the beach.  He loved life.  He loved me and he loved his father and he loved his sisters and his brother.  We miss him so much and the passing of time does not dull that even a little bit.  It's like being stuck in two time periods.  Time stopped in 2009.  Forever.   But it also went on and so I guess I live fluctuating or vacillating between the two.

I am thankful for the parts of my heart that remain alive.  They have names - Emily, Julia and Liam.

And my heart does still beat for Bryant ~ just like I promised him.  I love you Bryant and I miss you, xo xo ~ Mommy.

(Info about the rip currents is from www.howstuffworks.com)

Love & Grief

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

Grief.  Yes, I know and hate it.  The feeling is so intense, unlike anything I have ever felt before, except for one thing; Love.  How can that be?  How can Love and Grief be lumped into the same sentence, ever?   I think we grieve in direct proportion to how we love.  Not how much we love, but how.

I never really realized what the heart was capable of.  As a younger person, before I was married, I did some incredibly asinine things, but I never really had anxiety.   Much the opposite, in fact, I was mostly carefree and pretty wild, up for just about anything. 

When I got married, I had my first actual panic attack.  Most women are happy to be married. I was freaking scared out of my wits.  I couldn't believe I had actually done it.  Perhaps the control freak in my was starting to show up.  Eventually, I settled down and was content in the whole marriage thing.  Then I found out I was pregnant.  I was pretty happy about it since we both wanted children; maybe not quite that fast, but it was okay. I felt I had done everything I needed to prior to being married.  It didn't take long for the incredible dread to set in. I knew something was wrong with the pregnancy but I was 23 and who would think such a thing?  Not the doctors, who told me I was "not going to enjoy my pregnancy" if I didn't stop 'imagining' things.  Ha.  The day Bryant was born, I think that pretty much shut the door on me ever doubting myself ever again and vowing to be in control, always.

It's also the day that I found out what love really was.  Total, 100% unconditional love.  I remember the 'bargaining' ... please God let me change places with him.  Please.  Please let this be a nightmare.  Please let him live.  And on and on it went.  So, yes, Bryant did live, despite all the issues he had.  But he had some very close scares and was medically fragile.  From Day 1, I went on a roller coaster which I believe I will never be off.  It was profound.

Having that type of love, that feeling, was scary.  I knew the other side ... what would happen to me if something happened to him?  It would be bad, I knew that.  The longer he lived, the more we did, the healthier he got, the more I could 'relax'.  But it was always there and when he was 10, he went into status (a prolonged seizure for over 2 hours).  I've blogged about this before, but it was a pivotal moment because I realized I could really never, ever relax.

So Bryant lived 20 glorious years.  You might say I was prepared for the probability that he would die.  But even though I knew how bad it would be, I could never have prepared myself for the grief.  The pain and the hurt.  The absolute horror and terror.   It's in the human spirit as well as our animal friends for the 'flight or fight'.  Well with Bryant's life, I was constantly stuck in the Cortisol bath of "fight'.   For everything.  He was worth the fight and man, I fought.  When he died, well, there is no fight  or flight but the cortisol was still stuck on.  I was literally paralyzed with grief.  There is no respite or escape from grief.  Even when you find yourself laughing or smiling at something, grief is there to stomp on it and drag you right back down.  And sometimes, I confess, it's much easier to stay down.

There is nothing really to fight and certainly no flight involved with this foe.  And sometimes, it's even safer to just be paralyzed.  The intense feeling of grief is so awful and horrific that sometimes it's just easier to stay there.  To venture out, to risk being hurt like that again, are almost, at times, incomprehensible.  It's kind of like the old example of putting  your hand in fire or on a hot stove ... your body tells you "hey that was a really stupid move, don't do it again".  Well with grief, it's much the same.   No one wants to feel like that and every time you venture out of it, you risk getting 'burnt' again.

It's ironic to me that psychiatrists will label someone with grief as 'depressed'. I think we could all skip the 6 to 8 years and come up with that diagnosis sans medical school / training.  Or to call it 'mental illness"?  Try trauma.  Try an actual trauma to the mind, body and soul.   Grief is miserable and no one wants to be around it, obviously.  No one wants to hear about it or talk about it.  So people deep in grief either shut up about it or compartmentalize it for where it's okay to talk about.   That's usually with someone who has gone through it and understands it.  There are physical symptoms that go with it as well.

Everyone knows life doesn't go according to plan all the time. I get that.  But I also get that sometimes feeling grief is better than feeling nothing at all.  Because sometimes that's what it feels like.  Without the grief, you wonder what emotions await you and you wonder if you will ever actually break free of it and if you do, you are definitely scarred by it, not wanting to ever feel that way again.  But that's the thing.  That's the flip side of love.  And Bryant was all about love and living.   It's hard work and I am heading quickly towards the really bad times - January - March just plain suck.  I had a massive anxiety attack the other day.  So I know it's coming. My goal this year is to try and meet it head on.  Last year was awful and I don't want to feel that type of pain ever again, but I know it's not something I am in control of.  Grief has a way of waiting for you ... so you have to go THROUGH it to ever emerge out of it.  That's my plan.

In the meantime, the question I suppose is this.  Would I have done anything differently February 1st, 1989?  No.  I would have fought for Bryant to live and I would never ever want to imagine life without him.  Love trumps grief Bryant.  I love and Miss you xo xo Mommy

The Waves of Grief

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

Grief.  Such a strange emotion.  Definitely unlike anything I had ever felt before.  I have felt enormous fear and incredible joy; but fear, it's an animal all onto itself.  The thing about it, for me, is that I think we grieve in direct proportion to how we love.  That's not 'how much' we love but 'how' we love.  Some of us, are just wired that way, demonstrative and outgoing, wearing our collective hearts on our sleeves.  Believe me when I tell you, I learned many coping mechanisms while Bryant was alive that got us through some pretty awful and dark times.  But this?  I just don't know.

I posted about "Baby Steps" which is absolutely true in my case.  And also living in the moment.  That's mostly what we did while Bryant was alive.  But, as stated before, my greatest fear was always that Bryant might die.  Thoughts pushed far from my mind though, although they would occasional intrude ... I managed quite well in keeping them compartmentalized.  The thing is, with grief, sometimes you will catch yourself being 'happy' and that, in itself, can seem bad.  I sometimes feel I have no right to be happy, nor any desire to be happy now that Bryant isn't here to share it.

Guilt that I am here and he's not.  It's not supposed to go in this order. He is supposed to be here enjoying life.  Living it.  Sometimes this unjustness grips me so furiously that I literally cannot breathe.  I feel the anxiety attack coming and it just is like a giant wave that comes crashing down ....

I can use that as a literal example because I almost drowned at the beach.  There was a really bad riptide.  My daughter warned me about it and told me not to go out far.  Ha!!!   I thought.  I am from the northeast and have been to the beach all the time and what a silly girl.  Well for some unknown reason, and I do know better, I turned my back on the ocean.  I was going to try and ride the wave but was fooling around with my sunglasses when I was hit.  I never saw it coming.  I tried to get up but could not because another wave struck and the riptide just kept me, literally, on my knees.  I remember looking up and seeing my daughter and saying "Help Me" almost not believing what was happening.  She lent me a hand and I got up but I will tell you, I have never looked at the ocean the same way.  I will never turn my back on it again.  It's too powerful.

And so it is with Grief.  It's there to wait and watch.  There is no avoiding it and there is no sense in trying to ignore it.  It will knock you out and drag you down.  The only way, for me, is to meet it head-on.  So I spent yesterday in bed.  I don't have a lot of these days, but when they come, I feel it.  I don't look at it as "giving in" but more as respecting what is happening.  It's my way of dealing with the wave that is certainly going to come, certainly going to knock me down and certainly, if I do not keep an eye on it, drag me completely under.

My first encounter with "The Grief Wave" was about a year out.  It was almost Bryant's birthday and I was standing in front of the stove cooking.   Suddenly and with no warning, I was on my knees.  My entire body was limp, just buckling under something unknown.  At first I thought I might be having a heart attack and, believe it or not, was not that concerned about it.  I was not able to breathe and was suddenly overcome with this incredible sense of sadness and misery.   I managed to get up and went upstairs and just went to bed (luckily I had a little 'helper' in the form of a sedative ...)  However, that was the first time I actually felt something that powerful.  Even when Bryant died, I was basically numb to it.  Almost like a blur, being in a cloud most of the time.  But this experience, being knocked down by Grief, I was shocked at the intensity of it.

So I respect it.  I will not let it rule my life, but I will never turn my back on it. It's insidious and patient all at the same time.  The irony of it all is that those who have never felt it's enormous power, think you can somehow "control" the waves.  Sure, you can watch for them, but in the case of Grief, it's not always visible when the wave is coming.  And if you don't recognize it, well it's gonna hit you either way.  When I was down, caught in the riptide, I then understood the gravity of the pull and felt it of course.  And in Grief, just as with the riptide, I needed to ask for help.  Pretending I was okay was great when I walked into the ocean, but by the time I was knee deep, I was in over my head without even seeing it happen.  My daughter warned me, just as some warned me early on about how it wasn't really ever going to get better 100%, that time would not heal all wounds ~ those were the honest ones.  Those are the people who can be a life-saver to have because they KNOW what they are talking about and they don't tell me to "get over it" or assume because I have a good day here or there that this is somehow not real.

So I wade through this ocean of life, in awe at the beauty and wonder of it but also aware of the powerful grip of Grief.  It really isn't a subject you can bring up over lunch with anyone unless they are part of this club.  We all grieve differently, that is for certain.  We love differently too ~ but therein lies the spoiler.  I loved Bryant so vehemently and I am so outraged that he is not here, that I can expect the lows and the highs ~ just as we did when he was alive.  Some days it just seems like it's too much to bear.  Some days it's hour by hour and then, there are other days when I'm okay and it seems, perhaps, Grief may have taken a respite from plaguing me.   I definitely have my eyes out for it ~ it's not something to NEVER turn my back on.

Loving you every day Bryant xo xo Mommy

How far out? Far, really far.

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

Bryant and Emily @ Disney - Grand Floridan

Strange language results from residing in different worlds.  We had to learn very quickly upon Bryant's birth and our introduction into the Special Needs world and the Medical Arena.   It was literally, a life or death situation.  The fact that Bryant's very life depended on us did not ever leave my mind.  We were, in fact, responsible for his every breath.  I remember watching his chest rise and fall and being able to count it and know instantaneously if something was up.  Even if the count was normal; I knew.

When you have someone who is totally dependent on you to live, it's a very complex emotional situation.  Most of it gets buried deep within because if you stop and take the time to think about it, well that in itself can be devastating.  I picture it like having death lurking around every corner.  Certainly, at the very least, danger.  Life-threatening stuff.  If someone coughed or sneezed, well that could translate into a collapsed lung and perhaps a 10 day stint in the PICU on life support.  A twitch?  Could be a grand mal that would leap into status and cause him to seize for over 2 hours.  That was brought on by chicken pox.

When Bryant was born, besides the obvious question - Is he going to live there also was, how is he going to live?  Will he see his first birthday?  Will he crawl?  Walk?  Talk?  Eat?   What would happen when he was done with school?  Where would he live?  With whom would he live?  How could we make our home more accessible for him and with what funds?  Would his funding be cut off?  And the worst question ever faced by parents was the conundrum we faced and probably many special needs families face - What if we die first?

The only thing worse than having someone depend on you for every living moment is not having them.  The threat of Death was around all the time.  We were trying to outrun it the best we could.  Certainly Bryant was on his own mission to be sure his life had meaning and was successful.  Some people may erroneously believe that now we can "go on with our lives" and it must somehow be a relief or easier.  But it's not.  Even with the nightmarish conditions of 10 day hospital stays, countless operations and the threat that each day may be his last; this is not easier.   This is a horror from which I ran and Bryant ran 20 valiant years.  We all did, his siblings, his father, his extended family.  We all raced.  Fought the fine fight.

As I move through this awful journey without Bryant, I now have to face the new and profound set of challenges.  Bryant isn't here physically anymore to take that away for another day or time.  It's here now.  People in the mourning process also have their own language and one question we ask each other is "how far out are you" meaning how long has it been since your child died.  Just those words, are almost impossible to type because it makes it even more real.  I answer with the time, as we all do, but the other day I realized, this isn't just from the time Bryant died, this is from the time he was born.  The grieving process was put away on a shelf, occasionally looked at; but I was more afraid of confronting any of it because I just didn't want to ever believe that Bryant would die.  I knew he could ... but we always seemed to out run it.

Even with the surgery, the sudden illnesses, watching horrific things happen (like IV's drilled into his shins) ~ well there was hope he would beat it, he would get better and we would go on.  That's all I wanted. I never asked for more.  I was content with Bryant's situation and we were a good team.  And to have that ripped from me after all we went through drives my anger beyond sometimes what I think is humanly possible to bear.

So basically, I find myself still in a cross-road.  I am trying to listen.   I had to learn how to compartmentalize the issues and feelings and even to block some memories entirely.  I would love to believe all this makes me stronger.  But, in fact, it just makes me harder, my defenses always up,  Emotionally withdrawn and really not to interested in exploring my 'feelings' because maybe it's just too painful to confront what is there.  I've kept it at bay for so long and I really do not know any other way.  Clearly it's not working.  It worked when Bryant was alive because he was our spark.  ~ so actually, one could say, I was dependent on Bryant to live....................... not really the other way around ~~~~~~~~~~~~~~~ =]

Sadness has its place an I am sure it always will.  Looking back at everything that was thrown at Bryant and us, I try and pull forth the reasons we kept going.  Was I really that strong?   Nah.  It's because Bryant had this incredible way of making us "live in the moment".    That was the key then and I think now as well.  Every moment spent grieving is moments that are taken away from living.  True, part of life involves the reality of sadness, grief and reflection.  I think perhaps the connotation is that it is bad somehow, or not healthy to be sad, explore your grief and reflect on that.  And for me, this is where the "Aha" moment comes into play.  When Bryant was sick, he was sick.  That was the moment.  The OH MY GOD is he going to live through this ?????  And when he did, the relief and the knowledge, that yes, death could be around, but if you stop living, then you are already dead.  Sounds corny and silly ~ but it's truth.   I think the point is that yes, life does sometimes have to stop for whatever reason, but it also has to resume. So taking the time to confront grief should be just that ~ and then the get back up and live for the moment.  I am tired of watching and looking and waiting for grief.  The gloves are off.

If we had not followed that creed while Bryant was alive, I would have been too scared to move. I would have shuttered him at home and barricaded the doors.  That would not have stopped anything, except living.   I would never have done that to Bryant so now I wonder why I would do that to myself or my children or my spouse?
 

Does this mean the pity parties are over?  I've had some revelation?   Well that would be nice but it's not reality.  The reality is that my life was forever changed the day Bryant arrived.  The wheels that were put in motion could never, ever, ever be reversed.  So to me, I will forever have over-whelming, painful, God-Awful grief lurking about ~  It is what it is.  But also, I know, I will confront and face it.  And on to the next moment.   Back to life with Bryant and the Magical Journey he set us on.
I miss you Mr. B ~ xo xo Mommy

Baby Steps

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

February 1989 ~ that's when you entered our World, or perhaps more accurately, we entered yours.  From then on, life changed in an instant.  Everything we knew, or thought we knew, was different.  It was a new normal that we would have to navigate and adjust to.  When you were born, you were whisked away to the Neo-Natal Intensive Care Unit.   I was transferred with you, as I insisted that I go ~ even if that meant discharging myself against medical advice and driving the 1.5 hours to the hospital where they were taking you.  Didn't matter to me that I was post-op, right off a c-section... nope. I wanted to be with you.

We were told that there would be no "heroics" (whatever that meant) and when I asked what that meant, the doctor (Dr. Bell) gave a long-winded answer that really didn't answer my question at all.  But then again, I was learning a new language.  I have to say, I did  pick it up pretty quick.  It was do or die, literally, in those days, and I knew your life was basically in our hands.  We had the 'choice' to remove you from life support or reject the g-tube or whatever.  Even though you were so small, 4lbs, 10oz; in the NICU you were a giant compared to the tiny preemies.

I didn't know any different, you were our first.  So at 4 months, you were still alive and quite a bit of heroics had taken place, including you surviving several full codes (heart and breathing stopped); CPR done on you for over an hour; Congestive Heart Failure, a Trach, G-tube, and countless pneumonia's and other things like RSV.  So when they called the meeting per our request, we wanted you home, it was immediately established that they were only sending you home to die; there was nothing left they could do for you and we had to state to them we understood the dire circumstances.  It was almost funny if it wasn't so serious that anyone could possibly "under-estimate the severity" of the medical issues you had.  You came home on a full vent (breathing machine) and you needed cardiac meds for the congestive heart failure  You were born with a complex chromosome translocation and it affected you head to toe literally.  Your brain had no known gyral pattern and you were missing the connection (corpus collosum) and you could not swallow, cough or eat (no gag reflex) which can be an issue when the stuff going down the esophagus ends up in your lungs .... hence the g-tube and trach.  You had as ASD which is a heart problem and just everything else all the way down to your bi-lateral club feet.  Several operations later, you were on your way ~

Baby steps.

Slowly, you improved at home, still attached to your CPAP machine that helped you breathe, baby steps.  Up in your walker, we were determined to treat you just like a regular, typical baby.  And we did.  But you were always older and wiser, causing me to comment one time to your father that you just didn't seem like a baby ~ looking into your eyes it was almost as if you were older somehow and, in fact, you always did the leading .... you took us along on this journey.

Baby steps.

It took a lot of work and some days, it was two steps back, one step forward, sometimes no steps forward and sometimes, more often than not, leaps ahead.  You definitely kept us hopping and your zest for moving and grooving through life was pretty clear.

It wasn't long before nearly 20 years seemed to fly by.  It got harder for you to be up and you generally used the power wheelchair to get around but you still used your walker ~ always taking a step forward.   Especially if it involved your father's motorcycle.

This was taken along one of our many road trips and adventures.   Always smiling, you were 'up' for pretty much anything.  It made life so much easier to have a spirit like yours.  I have never seen such an incredible amazing spirit guide ~ the profound influence you had on us and others.   Of course it worked both ways, so many people loved you and now so many people miss you because of all you gave. 

I know that you were getting tired.  It was harder to get around for you and again, we knew we would need to make adjustments.  I always half-joked that you would go right from High School to retirement, not necessarily a bad thing; I had plans for us to do this and that ... and now those plans, Bryant are gone.  But in the midst of my absolute angst and grief over the loss of my compass it has become clear to me that, again, it's going to be baby steps.  I look at how far I have come.  I know I will most certainly go backwards in my grief, but as in your life, I  know that means a leap will be coming to propel us forward. I cannot overstate how obvious that has become and to me, that's a huge leap.  I could not imagine ever going anywhere you hadn't had the opportunity to go.  Yet somehow, you have found a way to keep 'pushing' me.  Now, because of you, we will visit the Florida Keys.   Initially I had thought "no way" because I know how much you loved the beach and how sad it would be that you weren't with us.  Then it hit me, that's so untrue.  The reason I even have the opportunity to go to the Keys and California (we are doing a mid-west trip as well) is BECAUSE of you!

One of the friends I know, because of you, has generously offered to let us use her house at the Keys.  So you will be there.  And, the California thing?  That's a Compassionate Friends Convention.  I had dismissed that early on, because  you would never have gone there and how could we go without you?  Ha.  Then I realized, it's, again, BECAUSE of you that we have this opportunity to go.

Oh the Places We'll Go.  The Dr. Seuss book.  You know, in the beginning it seemed almost like a Dr. Seuss World where lived, the language of the medical world and special needs world - someone even wrote a poem to the Dr. Seuss "Green Eggs & Ham" regarding IEP's.  And really, that's how it was and is.  Your sister is planning the road trip, quite excited about the geography part of it.  And Liam wants to see the "petrified forest" - and Emily just loves to travel - you both were my little adventurers back in the day and she continues that love of life Bryant.  We all do.  Sometimes it's just so hard to move forward.  And I think of you, the visuals above, the photos of your tiny feet and the ones of you on life support, but you fought and you smiled and you loved and most importantly you lived.  You did not just survive or exist, you lived.  There's a profound difference and you clearly knew that.

Quite a comparison.  This was done for the speech I gave at Children's Hospital in Boston, MA regarding how successful one could be with a tracheotomy.  How someone could over come the unimaginable obstacles you had to ~ and to grow up into a man.  Wow.  I got to be your side-kick, we all did and it was one hell of a ride.

Another slide from the presentation shows us meeting (then) Red Sox player Mike Timlin, meeting with (then) Senator Sununu and just regular life at the Mall.  All of these were because of you.  Your charitable work for the Children's Hospital when we met the Red Sox at the fund raiser; the trip to Washington DC to meet with the Senator(s) and other Legislators regarding health care.   I would say you made the rounds and you made a difference and you made an impression.

So I guess that's what we miss so much.  And then just being in such distress, such grief, it was a new World, this time without you and this time definitely void of any sunshine or light.  However, the lesson is that you still are with us; that's impossible to take away and you have left me actually quite well-equipped with so many people who love and cherish your memory.  You took care of me Bryant and apparently, you still do.

So it's forward I go, we go as a family, baby steps.   And some pretty big leaps. 

Through the terrible horrible darkness of grief I have found that ray of hope.  This new journey we are on, we did not choose nor did not want.  But it is the journey we must take, nonetheless.    I thought it would be without you and that's why it's just so hard.  Yet these events, these opportunities, I realize, are gifts from you.   You brought them forward and wrapped them up.  We just have to open them.  And you know what Bryant?  That's my very plan.  Or maybe yours :)

To Infinity and Beyond Bryant.  Like Buzz Lightyear says!  Oh and Dr. Seuss ~ Oh The Places We'll Go!   All together, always.  I love you beer nuts ~ jimmy legs xo xo Mommy :)

New Year's Eve

All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me.

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