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

Who is running the Nuthouse?

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When Bryant was born and as he grew, through all the stuff he went through medically and school issues, people always marveled at my 'strength'.  They would ask if I had sought counseling or whatever.  The answer was no, because I was not, in fact, strong but by the Grace of God and through Bryant's incredible Spirit, I was always lifted up.
And Disney helped :)

Fast forward to now and the experience of the all too awful anxiety attacks, the first of which I had on the one year Anniversary of his birth after he passed. I did not see it coming and as described in older posts, I was knocked down, literally, and had a full out panic attack.  Since that time, I have had a few others, coupled with horrific insomnia.  I decided to seek help.  My regular doctor was of no help at all as she told me that I could not medicate this away (all of that medical school for that useless information?  really? I KNOW that much ....) okay and then she told me to exercise and perhaps journal.  What a freaking laugh and a half.  I journal all the time.  Seriously, can I have MY MD now?

Seriously ... it would be funny if it wasn't so darn sad.  So next up, I figured, okay, I would seek "real" help in the form of psychological counseling.  I am going to continue blogging about this because it is so incredibly asinine and almost downright dangerous the stuff that goes on I think it bears at least a Blog or two about it.  My good friend Trish has a Blog about her experience with her daughter and the help she has received.  Once I figure out to how hyperlink I shall add it in (and when I get her permission :)

Okay, so I went and I have to say, my brother did in fact warn me with his "Psychiatrists/Psychologists are just drug pushers for the pharmaceutical companies" ... I figured let's see what they got. I mean having a full blown panic attack while driving cannot be a good idea.

I was meeting with a counselor for about six months or so, just useless yakking with really no actual help and then I would see the "drug pusher" who is licensed to give out meds.  She is younger than me, just recently married and has no children.  And she's not an MD she's a Psych Nurse.  Yay me.

Here's the issue.  Even if I had great insurance that covered mental health, you are pretty much sealing your fate if you 'shop' for doctors, particularly in a small community like I live in.  They think you are just shopping for meds regardless of your medical history and whether or not you have ever had counseling before or been on any meds.

For me, I have never had counseling and never been on any meds.  EVER.  So you know, you'd think I'd be at least treated relatively normally.  Not so.  Rank & File.  Into the "med room" with this Psych Nurse who doles out meds cicra "One Flew Over the Cuckoos Nest" ~ she is insistent that I try an anti-depressant even though I tell her I am NOT depressed.  Probably more like a PTSD given what I did and saw, not just the day of Bryant's death but throughout his life.  Many of the memories were compartmentalized and not brought up for review during his life-time because of the horrific nature and, more importantly, because he had survived them so why bring them up?  After he died, well that's a different story.

Yet, if you follow this Blog, with the bad sad awful days, are the good ones, with good memories and lots of thankfulness for Bryant's incredible life.   I am now aware of triggers, like the Feb - March time when it's at the worst level.  So, I am just in the market for some insomnia / panic attack relief and would really like to manage it myself with say some type of anti-anxiety pills here and there.

However, I am told by this "psych nurse" that I must take the anti-depressants. I argue my case because I know so many people who do go on them only to be put on even more meds and more and more and more and really, when does it stop?  And why go on something I really don't think I need?   Because, she tells me, they are not addictive.  Oh really?  So they are safe to be on?  Unlike say, Lorazepam or Xanax?  Well how come just about everyone I know who is on an anti-depressant gets on these anti-anxiety drugs too?  I mean is it like a Club that you join so you get the perks of Xanax because you agree to take Prozac?  Well I am not buying it.

I know for sure that these meds have a place and they do help people.  I am only speaking for myself, and perhaps, others who find themselves bullied into taking medications they really don't think they need.  And for the record, I did try a couple of them and they did absolutely nothing except make me much worse and even more angry.

I wonder why the personality is not taken into account or really listened to. I thought I was making headway when I was assigned a new counselor for PTSD.  The first session she taught me how to breathe through my nose if I had a panic attack.  Even gave me a paper with directions on how to do this.  The second visit I asked her if she had children.  Nope.  But, she did inform me, she had basically raised her siblings ... uh ... yeah ... see no ... that's not the same thing.  Wow.  Really?  Oh My God.  I am in serious trouble here if my counselor thinks she can even begin to understand what losing a child is like when she doesn't even have any but tells me she raised her siblings.  Did any of them die I ask?  No she says.  Hmmmm... okay I don't get the analogy.  I don't understand ... you know that Disney movie with Rattigan where he annoyingly scratches his head and tells the other mouse "YOU'RE NOT COMING THROUGH".  that's what I wanted to say but I knew she would have no idea what I was talking about.

Back to the anti-depressants.  My grandmother was put on them after my grandfather died.  Then they added the other meds which follow suit because the issue was NOT depression, the issue was she missed my grandfather and nothing was going to medicate that away.  Finally, she had like 7 or 8 meds by the time they were done and now we didn't know if her falling off the step stool at 3:00 a.m. was related to the meds or was it early Alzheimer's or what ...

My little 35 day experiment with the Zoloft resulting in bulging veins on the tops of my feet at 3:00 a.m.  That seemed like a bad thing.  I also tried the Mirtazapine one which basically did nothing.  Now my Psych Nurse is pushing the Prozac.  I also tried a little white pill but I forget the name of it.  They didn't last ~ they did nothing at all.  Oh except I gained 60 pounds in about 45 days. One would wonder how that could possibly be good?  No end to anxiety?  Weight gain?  Swollen feet with bulding veins?  Hmmmmmm.... WHO IS RUNNING THE NUT HOUSE? 

Doesn't give me much faith in "try the Prozac" I mean what are we going to do?  Try every single one? I told her, you know it's like my migraines, the abortive ones (meds) do not work. I need to go to sleep and basically sleep it off. 

So I have considered just not going since obviously this "counseling" is a big fat joke.  Drug pushers for the pharmaceuticals.  Haha.  At least for me.  Again, I know they do help other people.  But if I am telling the Psych Nurse and the pseudo counselor, hey, it's not working.  The anti-depressants ARE NOT working ~ don't you think they should listen?  You know what I got?  The Psych Nurse told me she is trying to help me and I have to take the Prozac.  Wow.

Stay tuned.  I have an appointment Friday and I cannot wait to see what they say.  I see both of them.  I also have all my medical records from the office.  I plan to keep very detailed records of this experiment and experience.  The problem for me I guess is I know 'too much' from the experience I have had with Bryant's 20 years and doctors.  Some were very good, the best ones, in fact, told me they had no idea what they were doing but we were gonna do it together.  Work together.  Bryant had no known syndrome and one of his doctors told me we were "flying by the seat of our pants".  Bryant lived for 20 years.  They said he wouldn't live 24 hours.

Sometimes it's beyond us.  And sometimes we do know what is best for us.  In the meantime, I am amazed at this world of Psychiatric Stuff.  It's actually very disconcerting to see non-doctors handing out potentially harmful medication and insisting the person takes it, even when the person says it's not helping.  Cue Nurse Ratchett.

Out of the Dark - Into the Light

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*Blink Blink*  Hi Bryant.  It's Mommy.  I had an incredibly dark week last week because it was the week of your birth which is always hard.  Even during the darkest moments of last week I knew something was coming and although I have had some flashes of light, I know more is on the way.  This is good news.  Out of the darkness will come great enlightenment.  I have always known that in order to move forward I have to feel and be in the moment for everything both the dark and the light for they co-exist.

So I had the bad week coupled with a mother of a migraine, complete with Aura and Ligthshow.  Yippee for me.

I am not sure how coherent this post is going to be because my mind is on fire with words.  I haven't slept as good as I've been sleeping in a long time, yet I feel extremely drained emotionally but also, conversely, energized and compelled to write.   So here goes....

Whenever I tell anyone about you, the question that comes up the most is this Did you know anything was wrong when you were pregnant with Bryant?

The short answer is yes. I knew.  Next up in the discussion is how you were not supposed to live 24 hours, yet somehow, I knew you would.  Somewhere, somehow I knew, at least on some level.  And the most bizarre thing was that I had some type of inner peace even within the absolute hysteria and crazed times.  Again, it's like the two co-existed.

When you were laying there in your little isolette in the Neo-Natal Intensive Care Unit, I said to your father "He doesn't seem like a baby".  It's like on some level I already knew you, was connected to you and this was some meeting of spirits that already were aware.  It's difficult to explain in words but I knew you.  Not just because I carried you for 9 months, it was something else, like a soul mate type of thing.  Now most mothers would feel connected and I felt that normal mother thing, the maternal instinct kicked in big time.  But there was something else.

As I continue along this journey without you physically present, it is becoming increasingly more obvious to me that you knew me too and, I believe, you are in fact a Spirit Guide.  You definitely carried us when you were alive and you still do.   So yesterday was a day full of all kinds of signs and confirmations.  First off, I spoke to a long-time friend of yours "M" who I haven't spoken to in awhile.  She told me that she speaks of you almost every day and you are always there with her.  I was taken aback a bit but I remember she had told me that the morning you passed away, she was en route on a trip with her family and she had fallen asleep during the drive but somehow awoke and saw a sign that said "BRYANT" - she didn't think anything of it until she found out you had passed.

We also spent the Superbowl at your other friend's house "H" and she also speaks of you often and thinks about you.  Same with your friend "C" who I see a lot as well.  So you have me pretty well protected and surrounded by incredible love.  People who mention your name with such love and purity ~ people who you knew, who you touched and that helps me so very much.   I know I am not alone.

Now on to the other 'stuff'.  I have been sleeping much better and last night I slept very well thank you.  I had just wrapped up my reading of a book that was bizarre in the way it mirrored many of my dreams, most of which you have appeared in to explain stuff to me.  I was absolutely freaking out because I was like OMG OMG OMG I posted that on my Blog.  So I drifted off to sleep woke up around 7:00 a.m because Simba was attacking my head.  Stupid kitten (but I love him....)

Unfortunately, Simba not only woke me up but snapped me out of a dream about you.  I haven't had one in a long time (well relatively speaking) and this one, again was clear as day.   In the dream, you and I were in some kind of race.  I was pushing you in your chair (not your regular wheelchair but a different one).  Somehow, your foot got caught on something and I stopped and you looked tired.  I said "Bryant do you want to go home" and you shook your head yes and you said "I am done here, I want to go home".  Cue the stupid kitten.  Or maybe you did cue him.  That was the message, the dream the information I needed.  You looked tired in the dream but peaceful and very, very focused.  You looked me straight in the eyes too.  You were done.  And you wanted me to understand that. 

NOTE:  Me and Simba and You (my necklace always on!)

I know Bryant during your life you accomplished so much and after talking to "M" on the phone about you and how much you have influenced people and continue to do it in ways I will only sometimes know, it is clear to me that you had 20 years and you used them efficiently.

I feel very tired now.  It's hard for me because the words often fail me.  They run around in my head and the clarity that I wish to convey does not always seem to come through.  But I have to write it after it happens so I know exactly how I feel and so that maybe some day I can be more concise as to what is happening.

I do know for sure a few things.  Last week I was in such darkness, I just wondered what is the purpose?  I mean why bother?  So after a long rant to God, again I drifted off to sleep, except I was 'almost' asleep when I saw this flash of white light (it wasn't really white there is just no other word I can use) and it was coming at me, almost like a snowball.  It was unlike any color I had ever seen except to say "white" or clear or bright or whatever.  It shocked me awake and left me shaking.  I think that perhaps my lesson is that if you pray for light, well you will definitely get it.

I feel as though I have been propelled forward quite a bit.   Again, the words run rampant in my head - bouncing around but eventually I know I shall corral them and it shall all make more sense.  For now, it is a work in progress and out of the awful darkness of last week has come the most incredible light I have ever seen.

Most days Bryant I am amazed that I was chosen to have you in my life.  I often wonder why?  Not because of your medical issues but because you were such an incredible bearer of bright light.  The journey into that question continues.  But for now, I am fixated on your eyes ... the intensity of what I saw in my dream.  And I thank you for that.

Love and I Miss you ~ xo xo Mommy

Miracles & Signs & Dreams

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Double rainbow (photo), taken by us ... because it was so stunning and so beautiful, even through the clouds.  "Rainbows are visions, only illusions and rainbows having nothing to hide".  One of your favorite songs, or probably more likely my favorite song, from the Muppet Movie ~ Rainbow Connection.

Lately I have been very dark and closed.  I seem to do so much better when I am open ~ that's when the dreams come, the signs and the Love <3 ~ so one would think the obvious solution to my recent misery would be to "be happy".  Being open and being happy are different, although one can influence the other. 

I was talking to a "professional" about intrusive thoughts and trying to change my thinking pattern and while generally of no use, she did say one thing that stuck in my mind.  The thoughts are only intrusive if you don't want them.  Well obviously I don't want thoughts about you not being here and dying.  But without those thoughts, you will not exist.  You lived and you died, just as well all will do.  The issue is not the "thoughts" but more the spin on them.

So my new exercise in life is to welcome the thoughts and see how they relate to your Memory and my mental status.  I must say I do feel that as of late I have been extremely selfish and ungrateful.   And yes, I have discussed this with Jehovah.  I have also marveled at the fact that Jesus walked this Earth. I've always known that and just accepted that he did and then he died and it was for us... but now I can actually picture it and his emotions and thoughts.  Even though he knew he could change it and was going to change it, still he felt pained for our condition.

Jesus also celebrated Life and most importantly, Faith.  So I have been big on bugging God & Jesus lately and of courses the Holy Spirit to help me.  And not just 'relieve' me of pain, but to help me understand.   The Apostle Paul asked for his hardship to be removed and it was not.  So I think of that and think that and why?  It could have easily been removed, I mean the Apostles were healing everyone else it seemed.  The point was that, while God does not want us to suffer, sometimes out of the suffering comes a greater good.  You already knew that and were at peace with it and I think that revelation that I had the other night, coupled with the white light, has definitely shown me at least some of the 'answer'.

The thing is, the signs are everywhere.  The answers are too.  But sometimes I guess I am so caught up in my own self, I don't listen or more importantly, wait for the guidance.  The white light thing was especially stunning.  It almost felt like God was actually throwing it at me.  I was definitely NOT going toward it, it came fast and furious towards me, almost like it was hurled and I will tell you, it shocked me.  There was no mistaking it.  Almost as if God said, Ok, you want a sign?  Really?   Check this!

I also know I have had a lot of dreams, very real specific dreams and other things ~ yet for some reason it's not enough. I slip back into despair and neediness .... guess that's being human.  The spirit is strong though Bryant.  Like yours.  Well okay, maybe that's wishful thinking. Definitely not as strong as yours.

I know your life was a miracle.  I prayed incessantly for you to live.  24/7 all the time!

The picture above is me holding you so close and praying, praying so hard you would live.  The next one looks like you're saying "Shhh ... it's ok Mommy".  I remember this picture and wondering if you were trying to say something ... but of course you were only 1 month old, so you know, I dismissed it.  But I hear ya now.  You always saw and heard.  It was your Gift and you shared it.

So I hope I can make it through the next month Bryant.  I will be listening, watching and waiting :)

xo xo Mommy

White Light

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My last few posts have been kind of depressing I guess in a way, so much pain and hurt and sadness; that is grief.  But usually for me, out of the grief something else comes.  Last night I was on facebook and saw the post of the young man, Ben, who had posted about his near-death experiences.  And thus began the OMG factor.

Bryant cheated death more times than I can count.  But Bryant could not communicate as freely because he was using a computer to "speak" due to the trach and issues with his vocal cords.  I always wondered to myself how Bryant could be so forgiving and so happy and what must be going through his head or if he remembered any of the 'near death' things.  One thing I can say, if anyone knew Bryant personally, or had followed any of his struggles and triumphs, you would know that Bryant was ever-forgiving and even immediately following a 'near death' experience, would always be right back joking and laughing.   So I chalked that up to his awesome personality and just overall great ness.

Which is probably truth.

However, also mixed in there is Faith.  I now can see that Bryant did have a very unique relationship with God and it has become clear to me what had transpired.  I have been quite vocal in my thoughts with God ~ which is why I posted the above pic ~ it's never-ending questions and thoughts and quite  a few rants and rambling ... kind of like my Blog ... haha.

But in that moment last night, when Ben was holding up those cards, I had an immediate flash to what must've happened to Bryant.  A few weeks ago, I was having a super bad time.  I was really hurting and asked for help, maybe even that I wouldn't have to hurt anymore .... and I was starting to fall asleep and I saw this really super bright white light flash.  It stunned me and I was between sleep and being awake, a strange place ... almost like an direct answer.  I have never ever had that experience, never saw such a bright light.  That's probably not even the correct words to describe it because I don't think words exist that do describe the "light".  It's white light in its most pure form.  And it got my attention.

I have also had Epic Dreams and other things happen ~ I've Blogged about them before and as soon as I figure out to link words with places in my Blog I will do that ... but for now it's listed under Dreams or something like that.

It was kind of like that.   Except it was all white without the blue, but I think the blue here adds to the whiteness of the light or whatever, see, no words.

It would stand to reason that Bryant had some sort of peace with life and even death.   Before he died, he was watching Snow White and kept repeating the phrase "Sleeping Death" over and over.  He used to do that with movies so we didn't think anything of it; except now it makes quite a bit of sense.   As I have mentioned before, Bryant passed during the Spring Equinox as well, which also makes sense to me.

So now I have a little bit of peace as well.  I have seen this light, for whatever reason, for me it was not really peaceful though it more like a kick back to reality because you are not ready white light.  (I had been discussing this with God and I am pretty sure this was the answer ....)

I have also started to realize, as I combed over every detail of Bryant's introduction into life (his birthdate was yesterday) that he was, in fact, a miracle.  I know we all are, but I mean, an actual miracle of even being alive with all the things he had 'wrong'.   He was clearly a perfect spirit inside.  It's hard to explain how I have come to "see" this but last night was really a pivotal moment as I lay in bed with my iPad2 and suddenly that video was there of Ben and his life and it all started to come together.  While Bryant could not articulate as Ben did, Bryant did try and tell us and definitely showed us how at peace he was with his life, his medical issues and his disability(s).  He made them abilities.  He used his spirit and life to help others and he really did succeed.

I find it comforting now to know that he must've "seen" the light as well.  I truly believe this.  A compassionate God is there for us and Bryant was so sick so many times; cardiac arrest, status (2 hour seizure); temperature of 107 and he lived.  They worked on him once for 4 hours and did "bring him back" . The time he went into status, his fever at 107, seizing for 2 hours, then sick for weeks in ICU, as he started to come out of it, he would sign LOVE to me.  And smile.  How could that be when he had IV's drilled into his shins with no anesthesia?  Was his brained fried ~ literally from the fever?  Did he have a stroke during that time? 

Nope.

(Random pic of Bryant enjoying life)

He woke up and would sign Love or Hi or something cute and go back to sleep as he recovered.  I am pretty sure he had some company.  The song with the lyrics "In the arms of the Angels" ... I believe Bryant had been there and had seen that light and peace because his eyes were always 'alive' with that serenity that I only wish I could have.   Yet knowing that peace was with him and remembering him as we worked furiously to save him, I kept saying, "He's so peaceful" ~ he'd been there before, I know this now.

So in intense grief, once embraced, can come intense relief.  I thank God for that ~ I have asked and I have received.

xo xo Love you Bryant & I Miss you

Bryant is 23!

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BRYANT IS 23!!!!!!!!!!!  2/1/89

Well I guess this picture says it all Bryant.  We all miss you so much.  It was always a great big party of Life & Love when you were here with us and now it's so hard to re-focus and try to live the same way, the lessons you taught us and the Legacy you left us with.

Yesterday was very hard.  It was the 31st and I could remember the minute by minute details of 23 years ago when I had to go into the hospital because you had stopped moving ... I was 23 weeks and 23 and the doctors thought you were just being a "lazy baby".  Ha.  Your entire life, I don't think the word "Lazy" could ever have been applied to you.  Ever.   Never, ever, ever.

I was on a monitor for many hours through that awful night, praying you would not die ... and then the emergency c-section done promptly at 8:00 a.m.  I woke up this morning and at 8:00 a.m. it was 'officially' 23 years.  Wow. 

The picture above is very beautiful (especially with you in it) but it represents how you were always our "sun" not just our son and that even when it was cloudy or a storm was coming, you always were the sunshine in our lives.  And somehow, it was always peaceful and serene.

Today was a little better ~ I remember the Delivery being really bad but then I remember how you looked, so freaking annoyed and aggravated.  They said you would surely die within 24 hours, but HA!  I had already been in to see you and I knew, somehow I knew, that was not going to tbe the case.  I DEMANDED to be transferred with you and if they would not consent, I would check myself out of the hospital.  The doctors did consent and arranged an ambulance for me to go to the hospital you were being transferred to.

So began the Drama, in and out they came, every speciality known to wo/man, in and out, with bad news.  Really bad news.  Yet the funny part, as in ironic, is that the worse it got, the stronger you became.  And, in turn, the stronger I became.  No one was ever going to make me doubt myself again and it was time to fight for your life ~ and we did.
Now we miss you.  Our Guiding Light, Our Spirit Guide.  So many people have posted on my Facebook Page and on your Memorial Page that you aren't gone, that your light does, in fact, still shine on.  And I know that's true.  You were here for a reason, for a purpose and you accomplished so much in 20 years.  Far more than most 'average' people will accomplish in a life-time.  You brought me to new places, new ideas, new friends ~ you still take care of me.

Emily posted about you and how much she misses you.  I know you loved her most ... you would immediately greet her when she got home from school wit a big "I LOVE YOU EMILY" and she would kiss you and it was beautiful, but you know, it still is.  I see you in her, just as I saw her in you.  From the beginning, Emily was always at your side, fighting for you ~ my two little peas in  a pod.

Here you are with Josh Beckett of the Red Sox.  Reminds me of the Book "Oh the Places You'll Go".  whoever would have imagined the places we would go Bryant?  2/1/89?  Not any of the doctors.  They said you would die before that day was out.  And instead, you lived 20 years.  Advocating for others, helping others, making people laugh and smile and living YOUR life on your terms.  A lesson I do try and keep in mind ~ but sometimes it's just so hard.  Because while the memories are so sweet, the emptiness without you is bitter.  And awful.
I know that's now what you would want.  And I know you chose each day to live and to get up and go on, even when you were so sick in the beginning or when you'd catch something and end up sick, on life support in the hospital.  Your life, Bryant, was a choice and I need to remind myself of this more often.  You set the example for us and we need to focus ... so I hope I can.   Working on it ....

Uncle David came today with Lilly to keep me company.  We talked about the good times, when you would watch videos on youtube together or he'd break out the guitar and you would clap and sing and have so much fun.  Good times.

So I miss you and it's hard Bryant.  Some days are much worse than others and some days are actually pretty good.  And if I take my cues from you, I will know each day is a choice and really not one to be wasted.  You never did.  I was always so proud of you and now, Bryant, I hope you are proud of me. 

And finally, my good friend Linda posted this for me for you :  I am trying to figure out how to post it... stay tuned.


I love you and I miss you, xo xo Mommy :)