Bryant's Blog

Wishing Well - My thoughts

2009-12-21T16:51:00.000-08:00

So we had the Dedication of the Wishing Well at the Winter Concert by the Goffstown High School band. Charlene said a few words about you and your life. I could not go up - it would have been too hard for me. I find comfort in the fact that you would be very happy that I did not go up and blab endlessly since you were not one for sitting through boring lectures. I could picture you being there saying "GET ON WITH THE MUSIC!" You loved music so much. Anyway, we sat in the theatre, the same seats we sat in with you when we saw Grease and Peter Pan and Wizard of Oz and so forth. All the music and plays we had seen through the years. It was very nice. Melissa was there. She brought the plaque - she had a quote from the Wizard of Oz on it - it really speaks volumes to your life. The Goffstown News and the New Boston Bulletin both ran articles about you, your life, love of music and on-going legacy.

We miss you so much. I think about you all the time and seem to be able to think of millions of reasons to talk about you. You did so much, accomplished so much and gave so much. So I guess it would make sense that you would be ever-present.

I find myself thinking about things Bryant and really understanding so much more about you, us, and our lives. I know it's an on-going process, but somehow that's a great thing, because you are always in my thoughts and our conversation and therefore our lives. You made sure of that in all you gave to us.

So in honor of a life well lived and a life defined by those who love you - we dedicated the Wishing Well.

Love you so much,
Mommy

Dedication - Wishing Well

2009-12-21T16:50:00.000-08:00

Dedication

2009-12-21T16:48:00.000-08:00

Wishing Well Handprinting

2009-11-12T18:38:00.000-08:00

More Pics!

2009-11-12T18:34:00.000-08:00

More Wishing Well pics

2009-11-12T18:30:00.001-08:00

2009-11-12T18:30:00.000-08:00

Wishing Well

2009-10-31T13:21:00.001-07:00

Well Bryant, here is the Wishing Well. The moving (in more than one way) tribute to your generous spirit and personality as well as your intense love of music and art. The Wishing Well will be housed at Goffstown High School and we are going to dedicate it to your memory sometime in the upcoming months.

The Well will benefit the Music & Drama Club(s) at the High School. You loved music and performances so much. Ever since the day you were born! So how fitting of a tribute will that be? So many of your friends were there, it is truly amazing! Melissa, Hana, Christine, Nate, Brian, Kristen among them; The Special Olympics group and DreamCatchers kids and of course, the people who make them - Tamy, Charlene, Nancy ... everyone.

Anyway, it was a nice day, kind of brisk which you would have definitely like. Windy. Of course, you and wind, we know that's a match! Everyone was smiling, laughing happy. Talking about you and how much you loved a good time - laughter, music, smiles.

Time has been flying. It's amazing how time goes by, but then again 20 years with you just went by like that. Definitely wanted / needed more. I did have one major epiphany (again). When you were first born and at the hospital those first few months, during that llooooonnnggg drive home one of the songs that would often come on was "Everything I do, I do it for you" by Brian Adams. We had featured that in the CHAD slideshow that Emily did for the Leadership class because that always reminded me of you. And still does.

When you were in the hospital and that song would come on, the part in the song that says "There's nowhere, unless you're there" really meant so much to me. It was true, as soon as I had you, everything else became a mute point, there WAS definitely nowhere (worth being) unless you were there. It made me so sad to know you were in the hospital and I wondered if you would live to leave that place and if you'd ever have any quality of life.

Well cut to now ... we all know the answer. Yes, you lived to leave the hospital and you certainly had a quality of life. The interesting part of this is that you could change the words now to "there's nowhere that you're NOT there" - I see you everywhere. You did so much, lived so much, gave so much. Like Elton John's Circle of Life says "you should never take more than you give ... in the cirlce of life" and that's another yep moment ... you did not take more than you gave, ever.

And that was so apparent yesterday and I am sure will continue to be as your moving tribute makes the rounds, collect coins and helps, in some way, to give more than it takes. That's your life Bryant, your legacy. So yes, I see you everywhere, remember the things we did, the times we had and true to my hopes and dreams for you when you were first born - there is definitely nowhere unless you're there and you continue to be everywhere.

Love you and miss you - so much so it takes my breath away at time,
Mommy

Dreaming of Bryant

2009-09-30T13:47:00.000-07:00

Bryant, I had the most extraorindary dream last night. Mostly, the past six months have been sad dreams, me trying to get back to you and not wanting to accept your leaving. More like nightmares. But last night, I dreamed I saw you and you were in your wheelchair. Daddy was there and we were looking at the Dynamyte and trying to get you to "shake hands" and stuff. I knew it was a dream though and I was thankful to see you smiling that generous smile of yours, thankful for the time I could spend with you.

You stood up in your wheelchair and stepped out of it. Your back and spine were completely straight and your nose was absolutely perfect, your whole face, still you, but in perfection. You told me you were okay and I asked you for a kiss. You smiled at me and then 3 young men (around your age) came into the dream with a basketball! You shook your head and said "I'm going to play basketball MOM! and you were so tall and mature. I smiled at you and then you said "Remember Jehovah".

Bryant it was so much more real than any dream I have ever had.

Praise be to God Jehovah.

Late Summer - 2009

2009-08-24T14:45:00.000-07:00

Well a lot has happened this summer. We have been busy doing things, I have been thinking a lot. Always a dangerous thing, haha. Adjusting to life without you here in your physical form. I say that because you are everywhere. I can't ever adjust to "life without you" because that would mean you were never here. There is no life without you. So I adjust to life without you here phsycially. You continue to amaze, awe and inspire me. Some things though, I believe you would be happy to know, I have made peace with. At least a tentative peace - it's pretty fragile actually but peace nonetheless. I had a dream last night. Iwas in an elevator and for some reason just HAD to get to the 4th floor. Try as I might, it would not happen. The elevator kept taking me to different floors, variations on the number 4. I was so frustrated. There were other components to the dream, I should keep a pad by my bed to write this stuff down. Anyway, this part stood out in my mind all day and then it occured to me that the number 4 is the number of kids I have. Someone asked Daddy how many kids he had and at first he said "3" and then said "well 4". I do the same thing. I know it's just conversation in most cases but I cannot stop myself from talking about you. You were here and you did exist and you do matter. Big time to me. and Big time to Daddy, Emily, Julia and Liam.

So ... I realized my dream was about me trying desperately to get back to having my four kids, not three. Hence my realization and somewhat uneasy peace with the fact that I DO have four kids - just one of them is not with me here on Earth physically. It seems I could never let go of you Bryant, ever.

Now, here's the part that I have a very hard time with. I am getting better at this because I realize there is not much I can really do about this thing. People do not understand how much you improved our life. My life. I mean some people get it, but in general, people do not understand how much a unique and generous spirit like you could give. I feel like it's just impossible to ever communicate and I make myself crazy sometimes trying to explain it and have people just look at me like their eyes are gonna just glaze over. I refer to it as living with perfection - that's what it is.

You brought us to another level of life and living and understanding. So no, I can't ever communicate that to someone who hasn't had that experience. You taught us to take the opportunity when it knocked, to seize the day and all those other platitudes that people think are just that. We lived it with you. We had to. And then, my epiphany ... I don't like life lived typically - normally - regular ... it's so much better to live life Bryant-style.

I find myself thinking of you constantly, remembering the amazing 20 years we had. I do not miss the medical stuff, seeing you in pain, seeing you sick. Those memories do not seem to come anyway. When I see you in my mind, I see your face and see us together as a family; but I don't focus on the illness or issues and challenges because for us, your spirit overrode any of that stuff. Your smile and laugh and love of life was contagious.

I also remember that you never seemed to care if someone didn't "get" you, you didn't have time for that. I know for me it's a battle that I think I can now let go. I think it would be harder for me if you had cared at all about any of that stuff. You didn't. Another lesson learned and lived Bryant-style.

I was listening to the radio and heard "vincent" by Don McLean. It made me think of you - and how you lived such an incredible life but the words "the world was never meant for one as beautiful as you" really is a line that could have been written for you - because it really is how I feel about you.

Pondering ...

2009-06-09T07:37:00.000-07:00

Well good news. We have our new computer. Up and running. The computer guy was able to transfer most of our old stuff onto this one, so that will be good. One issue though is the running diary that I had for you. It did not transfer over. I was so set in my ways, using outdated Word Perfect. I wish I had put it over on Word. Anyway, the good news to that bad news is that I did have the brainpower to print it out, all 120 pages in its glory, in January. Which seems kind of ironic. The last entry is like 1/2/2009 - just a few months before you left us. I am glad I have the majority of it, it just seems ironic that so little of 2009 made it ... kind of like you leaving us too early. Anyway, all the pictures are in tact which is good, not that I don't have enough in the 100 or so photo albums. And the 75 hours of video tape. I started to transfer the ancient VHS over to DVD but only did 3 of the tapes. I guess I'll be saving that project for the Fall when Liam goes to school full-time. Emily will graduate on the 23rd. I am going to miss you very much that day. You would have 'graduated' sort of that day, but I also know you would have been bored to tears at the graduation so I guess I'll have to remember that to get a chuckle out of the whole thing. You weren't one for sitting around that's for sure.

We miss you so much Bryant. I am still in the angry stage. I told you I would be here for awhile if not indefinately. Not that I am angry all the time. Not so at all. Quite the contrary. I am angry that you had to endure so much; and angry of course that you left us way too early. That will never go away. But I am not angry-hearted, that's the difference. I am so thankful that we had you for 20 years. You have really taught us so much and as we begin to heal and contemplate what life without you being physically here means, we begin to REALLY see you for what you accomplished. What you taught and how you lived.

You inspire and you make me smile more often than not. Daddy and I talk about you all the time and the stuff you used to do and pull on us and how funny you were to be around. And how much you gave us.

It's been nice out. Mostly summer is here or at least on its way. Lots going on. Daddy has been busy in the yard, you would have gotten a kick out of that and would have enjoyed watching him. Oh, and we donated your Dynavox to another little kid. It was really, really hard for me to do. We still have the Dynamyte though and the info from your Dyanvox is saved so I still "have it" at least in that version. You used the Dynamyte more anyway so I am glad we are keeping that one. Anyway, Linda G came and picked up the DV4 and said she was going to give it to a 5 year old boy. That made me smile and I know for a fact you would be proud of me. You loved it when you got your first one, you were around 5. Linda remembers you and how much of a difference it made in your life. So, you continue to change lives Bryant. You continue to give.

We are going to the Graduation as I mentioned and then the next night is the Special Olympics Celebrations where you will be honored and remembered. I think you would have liked that, all the attention and stuff :) So I'll soak it up for you.

Love you lots, Mommy

Computer musings

2009-05-31T15:10:00.000-07:00

Well it's been an interesting past few weeks. The mother board on our PC is fried so I am awaiting a new computer, a Dell this time. We are now using the ancient lap top you got from FL. I am in awe that it still works. I was looking through some of the school work you did and got to thinking about you and school. But I think about you 99.9 per cent of the time. I think about your life and the days and the fun and just you. Daddy and I have pretty much given away most of the medical stuff or returned it to Apria - whatever they needed since it can't stay here. We still have the wheelchair and your Dynavox(s). Not sure what to do with those. THey do remind me of you, but they aren't you; when I look at them they invoke certain thoughts and memories since they were kind of "extensions" of you, like the wheelchair was your legs and the Dyanvox your voice, but they still weren't YOU. You always shined through and that's who I miss, you the person.

That is the thing I guess. I miss you, yet I see you everywhere. Emily got a new computer for college. She got a macbook like the one you used. There is a camera in it and I am wondering why you never used the one on yours. I wonder if it had it. I think you would have gotten a big kick out of it. She also got an iPod touch which you would have found VERY cool and I think I would have run out and purchased one for you. You always had the latest and best Bryant because you were the best.

I suppose I am rambling slightly. Today was nice, windy kind of, and you would have appreciated the wind. It ALWAYS makes me think of you :} So many memories are happy ones, it's interesting. I think about you all the time and they are happy, fulfilling memories because we never wasted a single day. Everyday was about finding something to do that would be fun and that's the legacy you have left us with. I do not feel though that you are really gone, it's a hard to describe feeling. I feel you everywhere. I am a changed person for having known you as a person. Daddy and I talk about you a lot and share our happy and mostly funny thoughts about you. Emily and Julia miss you too so much. Liam has been asking when you are coming home.

We have some big things coming up. We have Emily's graduation (which would have been your graduation also). She is going to get your diploma for you. The next night is the Special Olympics ceremony where they will honor you and also Emily for the Penguin Plunge. I am hoping to be strong and so forth; but I think a tear here or there won't hurt, right? I know you HATED crying so I will not get too sad. I also know how much you would have HATED the graduation ceremony, sitting for endless hours. So I will remember your personality and your sense of humor. As I always do.

Love you,
Mommy

Emily's Essay

2009-05-07T16:00:00.000-07:00

Below is an essay Emily wrote for her English class. The assignment is to write about "objects" that you own that define a significant moment in your life:

I’ve never taken the time to sit down and think about who I am or about things I carry that, in a way, tell about who I am. Sitting down and thinking about these things now makes me realize there aren’t a lot of tangible items that I can come up with to describe who I am. I’m an emotional person who tries to live in the moment, laugh really loud even if a joke isn’t that funny, sing along to songs I don’t know the lyrics to, and appreciate little things that make me smile. All of these things reside in me, not in a purse or a backpack I lug from here to there.
Memories upon memories fill my head. Trips to Disney World or simply to my backyard. Certain memories evoke specific emotions when called to the forefront of my mind. That’s when I run to my dresser and pick up my photo album. It’s small, and can only fit a total of about twenty pictures, but each picture can make me laugh, smile, or cry. Just by glancing at it, I’m immediately immersed in the smells, the sounds, the tastes, and the atmosphere I had experienced within the tiny piece of paper.
I keep the album on the dresser and pick it up on a day when I’m feeling down or just bored. Once it’s opened, I can flip to a random page and take one look at the picture and instantly transport myself back to that moment in time. . The picture here causes a totally different emotion to surface. It’s of my brother Bryant. It was taken at a house my family and I were renting back in 2008 after moving back to New Hampshire from Florida. The sun is shining, Bryant has a huge smile on his face, and my younger brother, Liam, is hanging off the back of the wheelchair trying to hide from the camera. I can’t help but become completely overwhelmed by tears from the stabbing pain in my chest. Closing my eyes, I can see myself running out the front door of the house around to the side where my father and two brothers were enjoying the warm day. My mother had instructed me to go outside and take pictures of them until she came out to join us. Bryant was doing doughnuts in his wheelchair with Liam on the back, so I turned the camera on and called their names. Bryant stopped and looked over at me, and I started to jump in order to get him to laugh for the picture.
This picture is both hard to look at, but at the same time easy. The first thing that comes to my mind when I look at it is that Bryant is gone, and is never coming back. That’s when the nearly suffocating sobs kick in and I want to collapse within myself for days. But then I start to think about the picture, about the events that led up to it. I can almost feel the warm spring breeze on my face as I ran over to Bryant and saw the joy in his eyes.
Crying is something I tend to do fairly often. Whether I’m really happy, devastatingly sad, or puzzled beyond belief, the tears are almost a guarantee. I’ve decided that whenever I experience any kind of heightened emotion my tear ducts feel as if they must react. So, I admit I am an emotional person. It’s just how I deal with things. It’s not the only way though. Ever since elementary school I have loved to write. Whether it’s a short story, a four lined poem, or a twenty page story in the works. Lately though, I’ve been doing a lot of journaling, mostly in order to organize my thoughts and get things off my chest.
I think I was becoming too comfortable with the way my life was going as of lately. Apparently whenever one gets too comfortable with life, something needs to be changed. But I never could have anticipated a change of this kind of proportion. How can a person be there one day, and not the next? How could you give that person a hug, tell them you love them, and then wake up the next morning to an empty room? These were questions that were haunting me into all hours of the night weeks after my brother passed. The only way I was able to get any sleep at night was to write it all down.
“March 26, 2009- Another night. The days seem to be rolling by. I think I’m in even more of a shocked state than I was a few days ago. I didn’t cry yesterday or today, which in a way makes me feel guilty. But I feel too tired to cry. It’s as if I’m all dried out.”
That entry was written in a red journal I had purchased only a few weeks earlier at Barnes and Noble. There had been a light brown leather journal that I really wanted, but it was near $40, so I settled for the hard covered red one instead. During the first few weeks following my brother’s death I found myself turning to the journal to release any pent up feelings I was experiencing. I found it extremely difficult to speak to anyone about how I was feeling, especially my parents since they were directly involved, and I felt, and still do, that I had to remain strong and not let them know exactly how bad I was feeling inside.

Living in Florida had its advantages. We lived about and hour and a half away from the happiest place on earth: Disney World. The first time my family visited Disney was through Make a Wish, since Bryant was significantly disabled. He was about four years old, and I was around one. The experience was phenomenal for all of us, not that I can remember, but ever since that trip, we started traveling from New Hampshire to Florida to stay in Disney once every year.
So, as far back as I can remember, Disney has always been a part of my life. Most people I talk to about it who are either my age or older say that it’s “stupid” or “for babies”. I would have to disagree. Maybe it’s just me trying to stay as young as possible for as long as I can, but I am forever grateful to Bryant and Disney for teaching me that it’s OK to be a kid now and then, and to not conform to what everybody else says.
Since my family is still to this day Disney fanatics, we own nearly ever movie out there. My favorite is Beauty and the Beast. Before our move to Florida, we threw out all of our VHS tapes in order to eliminate some “stuff” we’d have to lug across thousands of miles. Once we returned home to New Hampshire, we slowly started to buy the Disney movies all over again, this time on DVD.
We finally got Beauty and the Beast, and the first time I watched it was the first time I had in almost a year. Even though I had seen it dozens upon dozens of times before this viewing of it, I found myself smiling throughout the whole movie as the story unfurled. Now I make sure that the DVD is safe in my room, always close at hand in case I ever feel the need to be a kid again.
Shortly after Bryant’s passing, I found myself doing a lot of thinking. Mostly about how I was going to remain who I was without him. If a random person were to see my family and me walking with Bryant out in public, they might’ve thought how sad the boy in the wheelchair was. But they were so wrong. Bryant loved life and lived each moment to the fullest. He didn’t care what people thought of him, all that mattered is that he was having the best time he could have. And if that meant blasting some Disney songs, it didn’t matter.
I’ve always said that I’m thankful for the things Bryant has taught me, especially the ability to laugh and just be myself. Now that he’s gone, I’m afraid that I’ll lose that care free attitude and the fearlessness to walk into the Disney store while my friends sit outside, refusing to go in. But I know as long as I think about him a lot, and never allow myself to let other people influence my beliefs, it’ll be OK.
My mother and I got matching necklaces that have a heart shaped locket on the chain. I put a picture of Bryant inside so that whenever I’m out and about or feeling all alone, I can open the locket or just touch it and remember all that he has taught me.
Thankfully my family is very close. Through all of the difficulties we’ve gone through in the past month or so we’ve all stuck together. My grandparents, aunt, and three cousins all drove up from Florida the week after Bryant died. It was so nice to have people in the house to fill the silence that was beginning to eat away at me. Jackie and I are only five months apart in age and have been really good friends since we were young. Having her with me during that week was so helpful. Just being able to lean on her shoulder and cry with her made the searing pain subside for a little while.
One day during her stay here, she informed me that she had got me a present. When I pulled a green stuffed frog from the bag a smile lit up my face. Jackie knew that things like this would cheer me up, since she was like me in the fact that she wasn’t afraid to be a kid every now and then. Even though the frog was small, and couldn’t erase the hurt and devastating loss I was experiencing, it made me smile. And that’s all I wanted. I was so sick of lying in bed for hours just thinking and thinking and crying so hard I thought my heart would explode inside my chest. This little gift, which now sits in my room, was able to take my mind off of everything being thrown at me just for a brief moment in time. But after all, life is made up of moments; tiny snippets of time that we hold onto for dear life when something happens that could possibly make the world crumble around us.
I’ve been trying to let the wounds heal from the heartbreak that my brother passing has brought about. Sometimes I go into his room and sit on his bed; in the same spot I had laid in only two months ago to watch Disney’s ‘Sword in the Stone’ with him. It feels almost impossible to come to terms with the fact that someone who means so much to you can be gone within the blink of an eye. Yet, even though my world has been turned upside down and shaken a few times, I think I’ve come out alright. I think I’ve realized, more so than ever, that life is not a paved road. Oftentimes it has many unexpected and unwanted twists and turns, and it doesn’t come with a map or a compass guaranteed to show the way. Instead friends, family, and other people we encounter in life some time or another, are provided in order to teach us and help us along the way. Bryant was a guide, a teacher, and my big brother, and now that he’s gone I have to pick up the pieces and try to get back on the road and keep going. But after looking at these six items, it becomes a little clearer as to how to regain my bearings. I know who I am, and Bryant helped me realize it, so if I keep making memories, writing, and being a kid, the road will go on.

Tomorrow

2009-05-05T07:24:00.000-07:00

Hi Bryant,

Well this past week has been crazy. Everyone is doing good, missing you, of course, but keeping your memory close. We got the thumbies, so now we have your thumbprint closeby :) And of course, Emily and I have matching lockets, Julia wants one too. They are on us always, memories of you close by our hearts.

We went to the Planetarium on Saturday. It was a beautiful day. Hana met us. You would have liked that part, seeing Hana. Otherwise, I think you'd have been quite bored. One thing we did was hitch rides on a helicopter. You've done that before, but as a med flight which probably doesn't count, plus it was dark out. I think you would have been thrilled with a day, non-med flight in the helicopter. You were always a thrill seeker!

I remembered when we went to the Planetarium a few years ago. You've been there several times, but the last time was with me, Christine and Hana. You saw a movie there and then we walked around and saw a presentation / show and other stuff. So, it's like you are everywhere, always. You were always up for whatever adventure we had planned. And you'd always let us know, quite clearly, how you thought and your opinion of it ;}

Emily has been busy planning the Prom. I wonder if you would have gone. Probably. I am thinking it would have been fun. Graduation will be coming and I think Emily will get your "diploma". Things are in the works for several groups to honor your memory. So a lot going on. I wrote an article for the New Boston Bulletin about your life in New Boston.

Liam is playing t-ball. I remember you with your sports stuff. You liked it okay, nothing too exciting. I also was out shopping yesterday to get a VHS to DVD converter. I am going to convert all our hours of tape onto the DVD's to keep your precious memory on home video :) As you know, we have HOURS on end of it.

That got me thinking about some stuff. I watched the Hilton Head one. You were 12 I think. It was a lot of fun, it was windy on the beach and the waves were kicking. You were smiling because you loved the beach AND you loved the wind. What a perfect combination :) But what I thought about was your life and how we lived it. We rarely gave thought to "tomorrow" because we knew we had to live each day in the moment. So, we took every opportunity to do stuff. The van was packed, OMG, I mean packed. The hotel room / suite was packed. Crazy. To see it is amazing. All the medical stuff, all the supplies, traveling across the country.

Your choice of movie was "Mary Poppins" and you were watching it in the van and in the hotel room. So many memories. The thing is, Bryant, we always lived for today. We never said "Oh that can wait for tomorrow" - well maybe we said that about stuff we DIDN'T want to think about. But everything else, well that was for TODAY. And we did it, huh? We traveled, we saw, we did.

I know as I watch the 60+ hours of video, it's gonna really be amazing to see how much we did and how much you lived. I already know that, but I think SEEING is something else. to see it all again, to re-live it all again. The funny thing is, we used to come home from our excursions and trips and maybe watch the home movie and then put it away, for tomorrow. Because we had more to do.

Some mornings, particularly in the Winter, we'd pull one out while planning our next adventure, but mostly the home movies were for another day. That day has come now and I will watch them, copy them to DVD and hold the memory close. But, I also know "today" is here too and we have to keep your memory alive and with us and not slip into the past.

So along you come with us in our new adventures. Maybe you'll be gracious enough to guide us along, nudge us when we need it. That's how you always have been. Thanks for that Bryant. 20 years of life.

It might amuse you to know that Liam is into Star Wars right now. He got a Nintendo game and it plays constantly. It's great though because you were into Star Wars with Mark Hamill so it seems to be normal, just regular normal noise.

I miss you and I love you, we all do,
Hugs and Kisses - Mommy

Accepting the Unacceptable

2009-04-25T16:07:00.000-07:00

Well Bryant, they say in the stages of grief eventually comes acceptance. I was thinking about acceptance and what that means and it occurred to me that perhaps that is what the past 20 years have been all about. Accepting the unacceptable. Do you ever "accept" it? I guess, again, it comes down to the example that you have set over the past 20 years. So many people piss and moan about the simplest of things in life - yet you never complained nor did we. Given the bad news and poor prognosis, 20 years ago, we accepted the unacceptable. You took life by the horns and never accepted "no" - and we followed. Yet, we had to accept the unacceptable, as did you, the pain of surgery, the medical fragility, all of that. And to fathom the unfathomable. At least to the majority of "normal" people, haha. I always get a kick out of that term. And what the hell is so fun about being "normal" anyway???? Sure, I think we could have done without the crap of funky chromosomes, surely for your sake, being able to run and play; but in spite of those challenges, even the trach, you found a way to accept that unacceptable and to fathom the unfathomable. So now, here we are. Missing you and wondering how to accept this completely unacceptable turn of events?!

I was out today on the motorcycle with your father. We went all over the place, even drove by Bodwell Road. That's where our journey with you began. We drove all around the towns and remembered that you have been everywhere, thus you are everywhere I look and that makes me smile. You came, you saw, you did. You did everything. No matter who said you couldn't or wouldn't, you did.

I guess in the grief arena I find myself, perhaps permanently, stuck in anger. Not that I am angry all the time, mind you. Mostly I am at peace because I know you have brought me the epitome of peace. I smile and laugh mostly because of you. That's what you were all about, the driving force behind living a life no matter what was thrown at us, no matter how unfair, no matter how unfathomable or how unacceptable. Yet, it does make me angry and I think anger, in that context, drives me forward. I cannot wallow in despair or pain or grief. That's not what you were about. The anger, though, well that carried me for the 20 years. We would overcome, that was my motto, but without the anger and the drive, the passion, where would we be?

So it is forward, with the anger and the passion that we go. Accepting the unacceptable.
Love, Mommy :}

Leadership

2009-04-18T18:00:00.000-07:00

Hello Bryant. You will be happy to know that I have finished Leadership. I went yesterday and did my Action Group on AT, a subject near and dear to my heart as it helped us so much. It was our life-line sometimes to you so you could express yourself and we know, you had a lot to say :} Anyway, it went well. I felt very calm and almost, dare I say, peaceful. I thought a lot about you, I mean really, really thought about you and how much we had asked of you at times. Sometimes when you might not have felt up to it. Yet, you always were on for us when we needed you to be. So, I thought, what excuse could I really come up with to let my Action Group down and quit Leadership? You were a true Leader, a Pioneer in your own right in so many ways. So, I did it. And everyone was so happy to see me there, fighting on. They read a tribute to you and everyone applauded the strong and fierce fight of "Bryant Paquette" - your very name is known in the Disabilities Circle and beyond as a true fighter and Leader.

Then Daddy and Emily came to the Leadership Reunion and we had dinner with all the fellow Leaders. Today was Graduation, the official Graduation. While I have done everything, I did not feel quite right going to the actual Cermony. So someone (Beth) read my statement of what Leadership has meant to me.

"I started Leadership with a completely different agenda than I have today. Yet, Leadership has taught me a huge lesson - we did everything right for Bryant. Leadership has given me a gift, Peace. When I started Leadership in September I said my biggest fear was apathy in the Disabilities Community. Now I feel honored and rejuvinated to be part of this Leadership Class! I am not sure what the path will be for my goals, but I know the goals will follow the Legacy of my son, Bryant".

So that was my paragraph on Leadership. You continue to teach and touch people Bryant. I get e-mails and notes everyday about how much you continue to be heard. Today, Special Olympics asked if they could honor your memory with a special memorial band on the SO uniforms. The Leadership Group honored you with the Memorial Quote. Your name is everywhere. So, that helps me because you did not live your life as a victim. You lived your life as a person with an agenda and a real purpose. You took 20 years and packed an entire lifetime into them. And you lived with a zeal and zest just unmatched.

So for that I am thankful. Today was beautiful as was yesterday. Spring has sprung. Life is renewed and I can't help but think of you in Springtime. You, Bryant, are all about living.

Weak 3

2009-04-13T12:59:00.000-07:00

Well Bryant, counting the days still. I am sure that will last awhile. Things here are hard, getting worse I guess, because it's all sinking in. I am thinking (and reading) that this is completely normal and something you have to work through. Well if anyone knows a thing or two about "working through" it, that would be us, huh? This one is a little tougher though because you aren't here to guide us. Or so it seems. I know I should allow myself to see your life and not the death because that's where the peace will come. I also know, from my newfound preoccupation with the "grief process" that this will also take a long time. Great. Time. It's always about that it seems, huh? You gave us so much time, 20 years. I want to focus on that and what was good about it, which was pretty much everything. I can still see you so clearly and feel your hair, I always loved your incredible head of hair :) Those are happy smiley memories. I am not sure how you did it Bryant, how you lived each day to the fullest without any sadness. That was always the thing that amazed me the most about you, you were always happy and smiling, always ready to share a smile or high five. Always. How can that be? How can I be so lost without you? How can we be so lost? I am thinking we really are not. We are just "disoriented" by your sudden absense. Okay, so now I am not sure what to say. I am not sure how I wrote that. We aren't lost, just disoriented. Okay, so how to orient? That's what it's like. We were going, full steam down the path you had us on, full steam. Just moving, like break-neck speed. And then, all of a sudden, what the ... Bryant is missing from the "path". So, now what? No path appears, just the end. I can't seem to think that Bryant, though I picture, us - waking to find you gone and we are at this cross-roads. Arrows going every way, which way to go? And how to go without you? Like at Disney when we'd be at the Animal Kingdom, so crowded, so hot and look up so disoriented as to where to go???? Which way????? Which attraction? We didn't need no stinkin' map at the Magic Kingdom or even EPCOT. But we did at Animal Kingdom and sometimes at MGM when they would add a new attraction but that's because it was new. Like the path we have to choose now. Do we take the sad, worn down path of tears and unbelievable pain and hurt? Do we need to, for a time? I am not sure. Or do we celebrate your life. That's the question right now. What path, what direction, what "attraction". We are worn out, we are tired, we are hot. But like at Disney, we're still looking at what to do next. Because we have to. Sure, we could leave. But that's not really fun and certainly not your way. We need to find a nice cool relaxing spot and see a show or hop on a slow ride, at least for right now. You always loved Small World, but boy oh boy, could you hold your own on Splash Mtn? So, maybe we are on Small World right now and not ready for the Splash Mtn? Maybe we should let you guide us as you always have? Perhaps. Haps we shall.

Weds.

2009-04-08T06:57:00.000-07:00

Hi Bryant :) We went to the Including Samuel film showing at the high school. Nate was there and Christine was there and I was looking at the ramp and the empty hallways and thinking how much you would have loved to be running up and down them (well us running you wheeling ...) but it brought a smile because really you are everywhere in happy thoughts for me. I did a lot of thinking yesterday and listened to Amazing Grace about 100 times, somehow it makes me think of what you are all about. I bought an MP3 player, something I bet you would have loved to be able to have to flip through all the music tunes you loved. Which you did do, on youtube :) Anyway, somehow, you are making me feel better. I am trying to be calmer and "learn to be still" to accept and continue, but I know it's gonna take time and be tough. What can I say, I do not possess your strength. I only learn through it. Something 20 years of teaching surely should have an impact on me ... so I am trying to reflect on what you taught. 20 years Bryant. You really packed a life time into 20 years. Forever thankful I am for all you give.

Another day

2009-04-05T17:10:00.000-07:00

Bryant, what can I say? You make me smile. I miss that so much. The emphatic "LOVE YOU" to the "high five" and our famous volume wars. Seems like such a long time ago yet also seems like yesterday. I hope it stays like that "yesterday" because you are always in my mind and heart and constantly in my thoughts. I see your face in everything, like you are everywhere, it's Spring and life is coming back to the air and I see and feel you in it. Today was windy and you would have absolutely loved being outside on your bike. That makes me sad and cry; but I know you'd not want that. So instead I try and cry inside, trying to be thankful for the 20 years we shared and you gave so much to me. I am thankful for that Bryant. They are going to have a showing at GHS for a movie "Including Samuel" about including people with disabilities. It's ironic in a way since you were the pioneer for that back in the day. You didn't care about "inclusion" you just went. Anyway the GHS staff want to dedicate the 2 showings in your honor and I am happy with that because you definitely were all about being "there" being involved and making sure you were included. Who wouldn't want you included? You were always full of life and full of fun. So that was infectious to us and everyone else around. I still look mournfully at your wheelchair and bike, though I know they gave you such independence and freedom and wonder if I could ever part with them. I know you would want someone else to use them to experience that freedom, so we'll see. I think you will guide me, same with the van. You got use out of your stuff Bryant I will say that. You made the best and most of everything and what a gift you have given your mother! I am almost always smiling about some crazy thing we did like our famous trip to Canada and then Six Flags all in the same weekend or our other crazy wild fun adventures. How I miss planning that, because you were always up for another nutty adventure. I love you Bryant and the pain is seering, it is real and it is something I never wanted. I know you would never want me to feel such hurt and I think that's why the happy memories seem to overtake me when I am at the worst. So thank you for that. I love you and miss you. Hana and Christine miss you so much. Nate does too. Emily is so sad but we all try and tell each other how much love we share, still. You are in all of us, again we are blessed like that. It's almost like you were our ladder to perfection, a glimpse into what perfection could be. So thank you. A high five and "volume up". I will let you know how my week goes, I will try to be strong, but don't count on it, you know me. You always have been my strength, always. Love you, Mommy.

Sad

2009-04-01T06:42:00.000-07:00

Well Bryant, I miss you, but you know that. I am sad, deeply, deeply wounded but so thankful to have had the incredible fortune to have you for 20 years, yes YEARS. When you were born, we were happy with HOURS. Boy, we got greedy huh? I could use another 20 years with you and then another ...

I am so very sorry to be so sad. I know you hated sadness. You hated crying and you hated anyone being in pain. Even when YOU were the one who was sick or in pain, you tried to make us laugh. I laugh still for you Bryant, but the pain and ache in my heart (which is barely alive) just aches. I hope your spirit can help me get through this. Sometimes I don't see the point anymore. I mean, your sister Emily and Julia miss you and Liam loves and misses you too; Emily is in so much pain also. Julia is sad. Liam, he's Liam. I love them insanely too. They carry me and help me, as you do, but the jags of pain are like sharp glass in my soul. Like someone took the shrapnel and just cut into my very soul and being.

Bryant you gave so much more than you ever received. You continue to give because my thoughts of you are mostly of you smiling and laughing or playing tricks. But why did it have to end? I just want more. I want our family of six again. Here again. I suppose I am selfish, I know it was so hard for you, but you were so full of life, life real life. You embodied everything that life SHOULD be and the irony of the whole thing sometimes makes my head spin with craziness. You were a genuine gift of life, a gift of life and love and we all held it precious for those 20 years, I always knew you are a gift. I am trying Bryant, really trying. I think you'd be very disappointed in my behavior. For that I'm sorry. I feel robbed of those years we would have had together and it makes me angry Bryant. I am soooo angry you had to leave. Not at you. Never at you. I am just so angry mostly. I will try hard to see the love and light Bryant because for 20 years you showed me the light.

Letters to Bryant

2009-04-01T06:40:00.000-07:00

This blog started out last year as a way for everyone to follow Bryant's MANY travels and goings-on. He was a busy guy and had a lot to share. Unfortunately, Bryant left us March 21st and my soul barely hangs on. I miss him so much. Perhaps it will be helpful for me to continue to write in his blog letters to him.

Bryant's Life Celebration

2009-03-29T17:32:00.000-07:00

http://www.mydeo.com/videosavecopy.asp?ZID=481&CID=257053

This is the tribute to Bryant's full life. We miss him so much.

From Nate

2009-03-28T06:35:00.001-07:00

The following few entries are from Nate, Bryant's teacher. They really say everything about Bryant I can't find the words to express right now and he does it so well. I will post more "notes about Bryant" later.

Lessons from Bryant

2009-03-28T06:21:00.000-07:00

Bryant loved music. He loved to listen to music but he truly loved any opportunity to make music. He had many favorite instruments. He loved his drum and maraca. He would constantly choose songs to listen to on his piano. Bryant's favorite instruments were ones which he could play through his trach. He liked to play notes on his recorder but when I would bring my harmonica, which was every time I came, Bryant would ask non-stop to play. He liked to listen to me play the harmonica, but to see him "cough" (big H's Bryant) into the harmonica was exciting. The size of his cough he would make in order to play some music was far beyond his normal cough. Once again, this is just another example of Bryant doing anything for a little bit of a laugh.
Lesson: Laughter!
In these last few days, I have been trying to figure out not only what I was able to teach Bryant, but what Bryant was able to teach me. There was so much he offered me. Most importantly though, was teaching me the power of laughter. Often we are told to live life in certain ways. These methods and techniques often sound great in theory. However, they rarely transition to real life. They are just impossible to enact. Of all the things that Bryant has taught me, above all he has taught me to laugh. To always laugh. Of the importance of laughter. Bryant always found laughter. If he wasn't laughing, he was planning his next joke. I think that Bryant would want all of us to laugh. After all, if we can't laugh at something, what is its value? If something isn't fun, spice it up. Wear that silly hat or giggle glasses. Throw in a few notes from a harmonica. Whatever it takes to enjoy life. Enjoying life. With everything that Bryant endured, he was a poster child for how one should live in order to enjoy life. He wasn't always doing something enjoyable, but he was always, always, finding a way to enjoy it. He surrounded himself with people would laugh with him and allow themselves to be laughed at. Bryant understood the importance of good friends. Their importance is simple: provide that laughter and love that we so desperately crave and need. Let us all remember to laugh. It may not be as easy to laugh as it was for Bryant and it certainly won't be as easy to laugh without him. He was a catalyst of laughter a constant joker and it may take more work for us to be as happy as he was. But Bryant would want us to know that it is worth it.

Telling time and horses

2009-03-27T05:59:00.000-07:00

Bryant's Timing
We all have varying abilities to tell time without a clock. Bryant's seemed spot on. Whether he used his surroundings to figure out time or he just knew, I know not. What I do dkow is that despite his love of school, when school was over for the day, he got to watch what he wanted. What motivation! It seemed as if everday when school time was nearing completion, he would start to let me know that he wanted to lie down and watch a movie. Of course, I would tell him to wait a little bit longer. His next move was to back away from me and move closer to his bed. Of course, his bluff was normally called. When I asked him to come back to the computer, he would laughingly come back to finish our book, word, or song.
Meeting Horses
As I mentioned earlier, Bryant had become fond of taking walks last fall. Most of these walks were limited to the driveway. If we were adventurous we would make it all the way to the nearby cul-de-sac, a new road with few houses and even less traffic, the construction workers were it. However, one day, Christine and I decided to extend our trip a little bit. Instead of turning up the road, we would head straight a little ways longer and reach a horse farm. Our walk started out as usual, Nate acting like a fool with Bryant in tow, running as fast as possible down the driveway. Bryant was having a blast. That is, until, we "forgot" to take the right onto the cul-de-sac. Bryant became instantly nervous. What's going on guys? Christine! We missed the turn! He was ready to turn around so we could get to the new road. Of course the three of us persevered. We continued straight and on our way toward the horses. All the way there, Bryant was wondering what was up. Why we weren't where we were supposed to. He was suspicious. Then we rounded the corner. It was in sight! The horses were in front of us. It took a little while for Bryant to realize that we were at a a farm, and that there were horses right in front of us. As soon as he did, he made a B-line to the electric fence, stoping just short of it. An extremely large horse was staring him down, but with kind eyes. I was shocked. Shocked that Bryant flew over rough ground at near top speed. Shocked that he stopped just before the fence. Shocked that this horse had come right up to him. And shocked that the horse and Bryant were on such friendly terms. What happened next shocked me most of all. As Bryant reached his hand out to this behemoth of a horse, the animal bent his neck down towards Bryant. They both had the same idea; reaching out for a touch. Unfortunately, the fence kept the horse from bending his neck in the right position for the two to touch. But it was clear for any tos ee the desire that each had. Bryant had made another instant connection.