One More Day

Bryant

My Ecstasy

I have been thinking about some things lately and have put them into a category regarding two different input areas. First, I saw a show on Ecstacy and how it relates to Dopamine in the brain and second, I saw "Eat Pray Love" (saw .. did not read the book).

Anyhooo... here is my latest thing. When viewing the show on drugs and how they affect the user / addict, Ectasy really stood out because people use it for raves and in general, to be "high" on life and get the most out of their life / party. Obviously, the drug wears off and it can become quite addicting. Which got me to thinking about my 20 years with you Bryant. Seeing life through your eyes and being your partner in crime on so many adventures, it made me realize how I was high on life. Now, that Ecstasy is gone. Which might explain a lot of my "down" moods. The second thing was in the movie Eat, Pray, Love and how it talked about being quiet. Mentally. This is quite difficult for me, as you know, since my brain is like a super high way with constant multi-lane, high speed traffic. Even at 3:00 a.m. when I am trying sooooooooooooooooooooooooooooooooooooooooo hard to go to sleep.

So I have realized a few things. A lot of what I am experiencing is probably a withdrawal of sorts from the Ecstasy of being with you and having all the excitement of Bryant in my life. Everything was exciting with you. Your smile was incredible, you zest for life made it exceptional. At first, when you left, I tried to find you somewhere, and realized I cannot replace that. However, what I am trying to do now is focus on the "quieting" of my ever-racing mind to find the Ecstasy again, the zest and love of life, being high on being.

Easier said than done, of course. But it has given me a lot to think about and a lot to NOT think about. I understand with you we just did. Never really though about consequences too much, just did. And now I have to find that fire again. I know if I quiet myself and "listen" I will find it. I suppose because you left, I have tried to "get it" myself, but it has to find me. I have to let it. I have to "let go" and, as we lived with you, let it happen. Being the super control freak that I am, I realize the Herculean Task at hand :) But I think I know now what to do or what not to do.

Dopamine is an interesting brain chemical. And it's fascinating how it's made and how it works. And when I think of you, I get that happy thought and in my dreams now, I see how much happiness there can still be. I am taking a Creative Non-Fiction Class and I am certain most of my essays will be on you and your life as well as your interactions with the family and so forth. Emily is also in the class so I shall share some of our writings. I think, what would mean so much to me, is for Emily and I, and possibly Julia, to write about you and us and life. It all intertwines and sometimes I find myself so angry because I am so sad. I know it's a stupid useless emotion and I know how incredibly blessed we are to have each other and to have had known you (and continue to know you :) But damn the grief. Damn the pain that I can feel burning, almost tearing my heart. Damn it. I know you would not want that. And I know you guided me as long as you could. And I know you were tired. And I know I am selfish to want that and to struggle so much so without you.

Emily makes me laugh. She quiets my soul occasionally and I can see you in her and how she was in you. Julia is still Type A and definitely keeps me amazed. We are all in it together. And Liam. Hmmm... Liam. He's a little imp like you. That photo of you ... really really reminds me of how you made life interesting.

So the Question is now, can I find my Ecstasy, can I find my balance? I will tell you Bryant, I have been off-kilter for awhile. Things are becoming more clear and I am trying to "still" myself to hear ... we shall see. I know that you brought me to it so many times and now it is time for me to realize or at least start my new quest. A quieting of the soul, to listen ... the spirit is so restless and not in harmony with the soul. And I have heard, and I know ... the motorcycle incident ~ quiet, shhhhhhhhhhhhhhhhhh..... I guess I was expecting more fanfare, you know? So quiet I shall be, listening and waiting, attentive and, perhaps, my learn something new. Is it possible?

Here are the Definitions :
****Ecstasy (emotion), a trance or trance-like state in which an individual transcends normal consciousness
****Religious ecstasy, a state of consciousness characterized by expanded spiritual awareness, visions or absolute euphoria
*****Ecstasy (philosophy), a term used to mean "outside-of-itself".

Love,
Mommy xo xo

Living

I was thinking today about some more "heavy" stuff ~ like what it's like to be resonsible for life, truly responsible for someone else's life. Sometimes moment to moment. And how does that effect someone?

I know with you, Daddy & I had to vigilant, always "on" always ready ~ what was lurking behind the corner? It wasn't all roses and glory ~ as someone decided to point out to me. The irony is I was aware of it on a constant basis. Which brings me to "choices". Sure, we had the choice to not be vigilant, to become a victim or to doubt this or that. And at times, very rarely, but at times, I did doubt. Like for example, with your schooling. I was always in a hostile setting. No one got it (except save a few other nuts) which is what we were deemed. The regular public thinks of teachers as almost God-like Status, right there beside Doctors, having fallen from the sky. Again, we have choices. People go to school to become teachers and they may be truly caring, wonderful people, who "want to help" or "give back" or whatever other platitude they can come up, but the truth is, it's a choice.

They have made a choice to be a special educator, a therapist, a doctor. They can change that choice (not without consequence, but usually not life-threatening) and find another chosen profession / job.

Here's the thing. When a parent has a baby with special health needs, or medical fragility, they DO have a choice. They can walk away or they can stay. People used to say to me at times "I don't know HOW you do it" = meaning taking care of you Bryant. I would be speechless at times, like, wanting to say "What are my options MORON" What am I supposed to do? Did I CHOOSE for my son to have these life-threatening day to day health issues? Did HE choose it? No. So we "do" what we have to do because we have chosen to fight it. And you did Bryant. It was a choice for you as well. You, in my opinion, had the hard part. To get up every day with a smile and a zest for living ... but let's not get off track ~ this is about choices.

So having a child / baby who needs life-interventions on a daily, sometimes moment to moment basis, as in a tracheostomy or a g-tube ... what does that mean? That means if you make a mistake, it could cost your child his or her life. Literally. One small tiny error in judgement could cost them their life. Now some may argue that's true for all parents and I would suggest it can be, at times. But not EVERY DAY, EVERY MOMENT from the most simplest of things like eating and breathing. Sure, parents have to worry about their infant choking, but do they worry every single mealtime about aspiration or if they are making the right choice for food / calories? Do they worry on that trip to the Mall if that will be the one time their child is exposed to a deadly virus or bacteria that takes their life? Should they have just stayed home?

That happened to us. You got chicken pox somewhere. You weren't even in school at the time and no one else in the house got it! So where did it come from ???? How did we fail you? Thankfully you lived, but you suffered for months with the lingering effects until you were finally back to your old self. Same with the pneumococcal. Who knew? Where did you get that?

I had to choose your nurses, teachers, etc. School, that was a lot of fun. Due Process, Mediation, IEP meetings that went minimum of 3 hours, usually more like 6. Wondering if I was insane? Finding out I wasn't. That was the hard / sad part. Being on the SAC and other organizations it becomes clear that the real deal is with how much a parent can give and will give. We gave all and, in turn, received all from you. It was beyond worth it. You were a fighter and the Rewards were beyond description.

I look back at your life Bryant without regret. I know we made the best decisions available to us and you took them and ran with them. I suppose that's what makes it so hard and why I miss you so much. My choice and your choice was to live. For you to stay with us, to live and to just continue on. We were happy with that. So when you left, it's this open gaping wound that just cannot heal. The void is too large.

The person aforementioned said "But you were worried" as if in death I am "relieved" of worry. It is now replaced with absolute emptiness. Sure we were worried. Again, the worry was, chiefly, that you would die. But you lived, 20 years. Almost as long with me as I had without you. I was 24 when you were born so that means I had four years on the other side. So having you in my life is more than not, mathwise. I ran the numbers =D Anyway, yes, my worry was that you would die, but as you got older it changed to "what if I die first" and how you would be taken care of by anyone else. Or if Daddy and I died and left you. So either way, it was a no-win situation. There was no win coming out of that conundrum.

Anyway, that is what got me thinking about choices and life and the fragility in which we live. Most will never have such a collosal "choice" and certainly never experience the responsibility that comes with ensuring someone else's life, literally. There was no "I'll do it tomorrow" for vital signs, those were done almost every time I looked at you, watching, waiting, trying to stay one step ahead of a virus or problem. We were vigilant. And you were Valliant. That can be your name now, Bryant The Valliant. Always forgiving, always loving, always the Victor. Even in your death, I have a choice. Yet this one is so much harder Bryant. Life and living. Choices. It's so hard to do without you, which makes me pause at times and marvel at the wonder of it all. I always knew it, you were the actual driver of this whole thing. You were the one supplying us the will the fight.

Now I have to draw upon all of that. Sure, the worry is gone and it's replaced with the Horror of having to live without you. I dream of you often, the nightmares have subsided a little bit and are replaced with simple dreams ... not too remarkable. Last night I dreamedy of you when you were young, how you would stand and take steps and we would be soooooooo happy you were learning to walk. But maybe the "standing" in the dream means you took a stand. A literal stand for living. Again, I have to defer to you Bryant. And try and find the answers of life through a life well lived.

It is true that the resonsibility of keeping you alive is gone ~ ultimately we failed, at least that's how it seems at times. No matter how much we are told there was nothing we could have done, it still feels like we failed. And I don't dwell on that, you made sure of that - you chose the best possible peaceful way ~ I knew when I saw you, peace had found you, you did not suffer. Yet we suffer ~ and I try and find peace at times in the fact that I had the enormous pleasure and gift to have you in my life. To be resonsible for you. Somedays it felt like you were reponsible for me. My stabilzing bar :)

In my dreams, lately, you are happy and content ~ for that I am thankful. So many memories ~ so many happy times ~ so many right decisions. So many choices that we made together that have enriched my lfe far beyond words.

So while it may seem to some a relief or that maybe somehow it is "better" this way to them, they can't see, and probably never would be able to see the ultimate gift of life in having you. Worth the worry and all that. Worth every second of it. Bryant the Valliant. My Love Always. xo xo Mommy

Bryant

Winter 2010/ 2011

So Bryant !

It has been awhile since I wrote but you are in my thoughts and daily conversation always. I have had some ephiphanies of sorts here and there and things are finally starting to come together a little more about life and all that heavy stuff.

We miss you as always, some days it's almost too much to bear, I feel like I need to just go and lay down and sleep, but for me, sleep does not come easily. So I think about all the stuff we did and how much I love you.

We were going to try and go to FL but things kinda fell through so now I have come up with a new plan, we are going to go to FL/Disney around the time you physically left us. I know you didn't leave on purpose, you would never have done that, you loved us so much as we loved you but that is the way life works and we have learned to accept you are not here physically.

I am continually in an angered state though, although I try to shake it, I can't entirely and had predicted that right off the bat, I would probably stay "stuck" in the anger stage. But I find that okay now, because I realize so many things.

Here is my latest epiphany. While many would pity you and us because of their imagined ideals of perfections, we knew better and we knew you were, in fact, perfection. I have seen it and lived it and I know it. But the definition of perfection is where the issue comes through and some people seem to cling to the ideal of perfection meaning "nothing hard". It's actually the opposite, to view perfection you have to look past the ideals of human thinking and into the Glory of God and the Human Spirit.

I was reading a lot in the Bible and although I did know Paul had some sort of affliction I really never delved too deeply into it. I then heard something I hadn't heard before regarding Paul. The "thorn in his flesh" is now thought to be perhaps seizures. At the time of his life, epilepsy was considered a "weakness" and the Corinthians did not want to accept anything from Paul because of his "weakness". In his letters, he was strong, but physically he appeared weak and imperfect. He asked, three times, for this to be taken from him, but was told "in weakness you shall be made great" and that is when it hit me.

That was the case with you, you were made great because of perceived weakness on the part of human thought. But beyond that, seeing past that, we were able to glimpse the perfection much like Paul and other Apostles were at the time. Jesus surely could have healed Paul or Peter for that matter, yet he traveled at times with Luke (a physician) by his side. Whatever the case, the affliction Paul had was obvious and made him appear weak. Most wanted to reject him, which is the basic theme of his letters to the Corinthians ~ but God chose to make his weakness his strenth and prove the Glory of God.

So what does this mean? Well to me, it shows that humans have the CAPACITY, if they choose, to see the spirit and understand the greatness. Most choose to look past it or can't see it. And that part makes me so angry when I thin of it, but then I realized, it's not the goal. The goal is that God knows humans actually have the capacity to see.

I often wonder what I would be like had I not met you. Would I be compassionate, strong, empathetic and grateful for all of God's Gifts? The final touch came during one talk where it all came together. That does not make it easy of course. But it does make things make far more sense then ever before.

When Lazarous died, Jesus came to bring him back to life. Jesus paused and cried. Now Jesus KNEW he was going to raise Lazarus and Jesus also knew the Glory of God and the Glory of Heaven and the life after our course here is done. Yet why did Jesus cry? Why didn't he just push the stupid mob out of the way and get it over with already? Empathy. Jesus realized the state of humans and what they would go through because they didn't know, didn't understand and he felt that. He didn't say "Oh fools, I am gonna raise him so quit the whining!" instead he realized and empathized, because he was in a human state, that death is an enemy, a stinging force for those left behind.

Jesus holds that same option for us today and I guess that was my epiphany of sorts. Through weakness, he made you great and allowed us a glimpse into the perfection of human life.

I so wish to be able to write this more eloquently because it really has become clearer to me. The way you lived, the soul I knew, the life behind your eyes, the spirit which chose to live and love. I quoted a Beatles song the other day on facebook, it's the line "In the end, it's not the love you take but the love you make" and that, again, is brought into the light by your love and what you created. It was always about love and life and a testament of greatness to God.

So many are born without the "imperfections" perceived yet live their lives blinded and dulled, unable to see. It is sad in a way because viewing perfection and God's blessings is something powerful and wondrous.

I love you so much and miss you so much but the lessons you taught continue to come through Bryant.

xo xo Mommy

Bryant at the Museum

New Year ~ 2011