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Thursday, November 24, 2011

Thanksgiving

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Today is the day we have decided to call Thanksgiving.  I was raised to not put so much of an emphasis on ONE day, but the thought was that we should be thankful every day.  This is all good in theory, but I think sometimes the world can just grate on you, make you see the harshness, cruelty, sadness and ugliness of what surrounds us.

I was upstairs, reading through the newspaper, browsing the frantic ads for BLACK FRIDAY (which is now technically today for most stores....).  Anyway, my new kitten, Simba, was sitting on me.  He has to be on us at all times or at least near us.  So cute and cuddly and perfect and clearly oblivious from the realities of the awful terrible world.  Which is partially what triggered the thoughts on the beauty of the world.  Something as simple as a tiny kitten, the wonder it sees in everything, even a dangling string, is just amazing to a kitten.  

We have been provided so much beauty in the World, yet it is clouded out by the darkness and misery so many times.  Losing Bryant was the most awful horrific thing ever.  He was beauty and perfection personified, so close to God, so resilient and such an incredible soul.  Bryant had "old soul eyes" like he had seen so much, even as a tiny infant, but in a good way.   Like he was always leading, always knowing and always my solid rock.  Really for the whole family.  Bryant was forgiving and never mean or hateful to ANYONE.  And it's not because he didn't "know better" it's because that's who he was.



It's hard to ever be like that; at least I have found.  I find myself angry, consumed almost by anger that he had to leave.  Angry that his brother and his two sisters have to have seen and know such pain.  He had so much to give but there is something inside of me that knows ... that he knew .... that the day would come that he would have to go.  He was medically fragile.  He had already survived 20 years, 1 months and 20 days more that they had expected.  He was given 24 hours by the medical team at the time.   Bryant had other plans.

So I try and focus now on what it means to truly be thankful.  It means that to be thankful, you have to understand there will be things you are NOT thankful for.  In order to understand appreciation, you have to know what it  is to not have something.  And I don't necessarily mean this in material terms although it is often perceived that way and that is because we are physical / sight motivated.  But at the core, is the essence of who we are, and Bryant taught me about that.  He taught me to be thankful for things I took for granted and for things I never would have even noticed before.  And that's a Gift.  So I am thankful for Bryant and all he taught me; just as I fight the intense anger that he is no longer here.  I know it must have been hard for Bryant, knowing he had only so much time and so much work to do.  And such a weak subject (me).

So I have decided, not because it's Thanksgiving, but because living any other way is just miserable.  And knowing Bryant could have easily chosen that path.  A path of hate and anger and misery; and who would have blamed him?  Instead, he woke every day with a smile and love in his heart and a "what's gonna happen today" attitude.  Meaning, what was he going to MAKE happen, to make every day, a special day.  Somehow he found a way.  Some were pretty big moments!  Others were just little things, but still at the end of every day, there was some beauty that Bryant had been able to show us.

There is a lot of pain and misery and hurt and sadness.  There is horrific stuff that happens every day. I am not, and will never be PollyAnna.  Except when it came to Bryant.  He could do that to anyone who took the time to listen and to learn from him.   Living a life of anger and hate and hurt, it's dangerous, it's unhealthy and it's certainly out of character with everything Bryant represented.   He tried to make the world a better place with his advocacy work or, in some cases, just a smile and an "I LOVE YOU" signed emphatically (sign language!).

So I guess I will try and live more in the moment, (a Bryant lesson), an open heart and an open mind, to the possibilities that are around me and the ones maybe I can create and the ones sure to come.  I also know that life is what it is, but to focus squarely on the bad only leads to being unthankful for all the good.  It's a choice and it's a choice that has to be made every day.  Not just in a blog or like in the movies.  Every day.  So it's a challenge and that doesn't mean it doesn't hurt, suck and that doesn't mean I am not significantly changed both by Bryant's goodness and by Bryant's passing.

For today and hopefully for most days, I will be thankful for my surviving children who make me laugh and smile every day.  They drive me nuts, but that's their job as well.  And for my soul mate.  Someone who I love and hate, sometimes at the same time, but who has been with me for 24 years and who is the most incredible father and man I will ever know.  Life is not perfect and a lot of the times it's painful.  But in those times, there is sometimes a choice.  And it's my hope that I can spot those times, when I do have a choice, and choose to live with gratitude for all I have had and will have the privilege to experience.  And I suppose, it's knowing Bryant still makes an impact.  I just need to let myself see it.  He's everywhere. 

I love you Bryant. xo xo  I love you Emily.  I love you Julia. I love you Liam.  And I love you Dave :)

Monday, November 21, 2011

Messages from God :)



So after some four nights of intense nightmares I wondered if maybe it was something I was doing or somehow needed to readjust my thinking?  I have had many negative emotions / thoughts and decided to try really hard to stop being to tense, although that's harder and harder to do when you have intensive, graphic nightmares.  I tried praying, like really intense praying - begging for help.  And then it came to me ~ I remember once hearing a Speaker talking about how we pray and do we ask our God Jehovah to help us?  Do we hold our problems out there for him to take and then grab them back when we're done?  Consciously or sub-consciously.  Well anyone who knows me, already knows the answer!  I am definitely a grabber.  I do ask for the help but then think I can somehow figure it out as well.  So I decided, you know what?  I am not going to grab back this time.  So I opened myself and thoughts to the Universe, to God and then I let it 'go' - at least as much as I can.  And the result is the picture above.  Some of you may have thoughts / comments on it.  I'd love to hear them :)  And yes, a big huge HELLO BRYANT! <3   Mommy xo xo

Friday, November 18, 2011

Bad Dreams


Plagued by insomnia ~ no wonder.  I have had 3 consecutive nights of intense nightmare.  Basically they follow the same general flow.  We are either notified or find out you have died and go to the hospital, where we are allowed to see you briefly and then they take your body and drop it down a shoot, like a piece of garbage.  There are variations on it, last night I dreamed we decided to visit your favorite place, only to find it was a sham, all made up of cardboard and fake; and infested with bugs (specifically ants).  It was disgusting and depressing and really nightmarish.

So I am not sure why I am dreaming these bizarre dreams.  You didn't die in a hospital, no one called us, you died peacefully in your sleep.  Obviously your body wasn't dropped down a hole like garbage, in fact, you didn't even go to the Morgue. I made sure you went right from the ER to the Funeral Home.  So I don't know why I would dream worse stuff, the real stuff is bad enough.  Like seeing you in your bed; knowing you were gone; doing CPR; trying like hell; and then having to see you at the Funeral Home.  Through it all, you looked so peaceful and at rest.  

I was talking with Christine at lunch and she said you were almost like a 'prophet' in your life, and I thought about that before she had said it, which made it all the more interesting because she was thinking the same thing I had thought.  That's how you lived your life.  And then she said that you were always on the look out for people you could help.  And God knows you helped me.   You saved me.  So the question is, now what?  I was driving around and thinking about that and how I should be so joyful, I really should be so thankful. I asked God please to let you live, when the doctors gave you 24 hours, God intervened and clearly gave you 20 years.  So I know that I need to really focus on that.  Which is why the nightmares are all the more questionable.

I have been thinking good and positive thoughts and knowing how much of an impact you made, yet I am having these awful terrible graphic dreams. I hate them.  One night I was stuck in it. I knew I was dreaming and I wanted to wake up but could not escape the cycle of the nightmare.  I wonder if it's because I am somehow missing steps, you know, through grief.  We all know we can't go around it, can't go under it, can't go over it ~ we have to go THROUGH it.  But why these dreams.

I still have the good ones. I have blogged about the amazing dreams where you make me feel so happy so enlightened and they are so freeing.  I would really appreciate one of these right about now.

I keep thinking of how much I miss you, but how much you gave me, how you saved me, and how I should live in the light of knowing you lived the best life you could.  The life you were given and the life you made, the life I begged God to let you have.   Somehow my hope is through these nightmares, something else will emerge, something maybe to propel me forward a little more to greater understanding.  That is my wish and my hope.

I am sometimes angered (well okay almost always) by this whole situation.  That you died.  It makes me want to scream and I actually do that, because you were so pure so beautiful and so loving.  So full of love and goodness and forgiveness.  I am your nemesis apparently.  And I know that it's like accepting a beautiful gift and then being so angry when it's gone ... and not seeing the Glory of God anymore.  And I want to so much. I want to see it.  Of course, when you were here, I saw it every day.   Now all I see is red mostly, I am so angry, so mad.  I am angry for myself, for Daddy and for your brother and sisters.  I hate seeing their pain and I hate mine.

So what to do, what to do?!  Is there anything to do?  Or just hope it gets better?  I don't know Bryant.  I see you everywhere and I know that is a Gift too and I should be thankful.   I need to readjust my thinking to become more like you and to really receive the Gift.   And usually I think I have and the nightmares come.  Let's hope it's some type of progress.

Love you,
Mommy xo xo

Tuesday, November 15, 2011

Friends

Friends.


My mind is running a lot.  Seems like it's on hyper-drive.  My memory is definitely not as sharp as I would like it to be and sometimes the mind-numbing tasks (like paying bills) seem almost insurmountable.   It's such a shift from where I've come from.  The harried and hurried days of having a child with a chronic health issue - I used to be able to do all his care and everything else, kind of like Superwoman on Steroids.   Then it was over, just like that.  All over.  Some of it was good but strange as well.  After 20 years of trekking to Childrens' Hospitals and IEP meetings and this and that; it was suddenly, in one fell swoop OVER.  All the planning and thinking and racing with time - DONE.   See I knew Bryant was on borrowed time.  And I also knew that life without him was going to be much harder than anyone could ever imagine.  That's because to most people, who did not know Bryant well, it seemed like it must be such a hardship, taking care of someone 24 / 7 - and yes, there is some truth to that; but not the type you'd think.  The hardest part was KNOWING I was responsible for his life, his actual life 24/7.  So of course, I was always on top of everything.  All of that died with him - but what he left behind was not relief from care-taking or relief from the worry - my biggest worry and fear was always that he would die.  So the worst thing had happened - he had died.  I always knew he was our Rock our Anchor in life, the whole family's.  So I was aware of all this and tried to race and outsmart time.  And we won quite a bit.  He wasn't supposed to make it past 24 hours and he lived 20+ years.

But that's all known stuff.  It's been 2.5 years since he's been gone.  Things have settled a bit and the fuzzy hazy feeling is faded, leaving the hangover phase, just sick feeling and not wanting to do anything at all, wishing for the fuzzy hazy feeling to come back.  However, life moves on.

A couple things have been free-floating around my mind lately.  One was a comment one of my CF Sistas made.  Under a photograph of us at the CF Convention, she wrote "The Greatest Group of women I never wanted to meet".  No truer words were ever written or spoken, at least as it concerns my feelings.  I let that thought run around in my mind and kind of settle in. I then began to take a good look at my friends list on Facebook and in real life (sometimes the two overlap :)  And I realized, almost everyone in my life is there but I never would have wanted them to be there.  Almost all of them were hand-chosen by Bryant.  Which leads me to the second point.  One of Bryant's most favorite persons, Christine, said something today when we met for lunch.  She worked with Bryant as his personal nurse for 10 years.  They met on 9/11 - believe it or not and in the chaos of that horrific day, a beautiful thing began.  A true friendship.  Christine loved Bryant and Bryant loved Christine.  She would arrive at 9:00 most mornings, to me, an awful morning person, but she was greeted by Bryant's enormous smile and heart.  And then he would wave me off.  Bye Mom.

Bryant knew how to pick them, that's for sure and unquestioned.  The Epiphany for me was a cross between "never wanting to meet" and "Bryant's choice".  When Bryant was born with all his medical issues and grave prognosis, I was horrified.  I never wanted to meet the doctors, the nurses, the therapists, the teachers - EVER. I just had wanted a baby.  But I got more than that.  Bryant always seemed older than a baby, to the point I had remarked to my husband as Bryant lay in the Neo-Natal Intensive Care Unit - "he just doesn't seem like a baby".  His eyes told a different story.  Bryant always carried us.  Always.  Even then.

So what Christine said was in agreement, yes, Bryant did know how to pick people who would enhance his life but that wasn't the whole story.  Everyone does that.  We find friends who can help us or who we have something in common with.  Give and take.  That was the key for Bryant as well.  He chose people not based on only what they could do for him; it was on what he could TEACH them, and this included me.  I was in a race with time, never knowing when Bryant would get sick, how bad it would be, etc.  But now, thinking back, it is quite apparent that Bryant was aware of that too.  He never had the time for anyone who wasn't ready to learn.  Bryant was always ready to learn; but he had a lot to give and teach and somehow, in the mix of it all, he was exactly where he was supposed to be.

Now I feel lost in a sea of being unsure, almost adrift.  The people I thought would be there for me really don't get it.  It hurts a lot.  But then it becomes clearer, someone says something, does something and I can see it.  Bryant already has that figured out for me.  My problem is I am not listening anymore because he's not here physically.  But he's still teaching. I glanced at my friends list and the people who are in my life, who have been there through this nightmare and who continue to be here for me.  Thank you so much for sticking by me, thank you so much for wanting to know and for understanding.   Strangely enough, even with my new CF Family, Bryant has somehow maneuvered it so that I have found the most incredible women I never wanted to meet.  They instantly know exactly what I am thinking or feeling.  Yet, the odd thing is that our children only have one thing in common for the most part.  They aren't with us anymore physically.  Other than that, their stories could not be more different.  Yet, that's the thing Bryant always was teaching, maybe I wasn't listening or learning, but I can see it now.  He has made sure my journey is continuing along the path he laid out.  I can't force it, I can't make it this or that.  It is what it is, just as Bryant was who he was.  He never apologized for that, and if someone wasn't receptive, he moved on.

I hope the lesson sticks.  In the meantime, I have to be more like Bryant.  Try and focus on what I have and what he has given to me.  He has changed my life.  Thinking of what it would have been like without him is without question impossible.   He is in us.  He inspired us and changed us and I'd like to think he is proud of us.  I miss you Bryant, but I see you every day.  If only I just look :)

xo xo Mommy

Sunday, November 13, 2011

Bryant's Quilt

Bryant's Quilt.

We had this made about 2 years ago.  We used his t-shirts and some of his pants to make everything - so even the colors on the side is from his clothing.  I had it on my bed for a year but the cats were on it and I didn't want anything to happen to it so now we have it displayed next to the bed ~ I can take it off and use it at night and then put it back during the day :)  It's full size so it's actually folded over in this picture.  But I love it so much.

Will Blog again tomorrow Bryant.  Had some epiphanies come at me today .... good ones :)

Love you so much and Miss you more than words could ever say ~
xo xo Mommy

Tuesday, November 8, 2011

Reflections from Emily

By: Emily Paquette

Despite the chaos that seems to control my daily life lately, there isn’t a day that goes by where I don’t think about Bryant. Some days it’s a passing thought; something that reminds me of him or something he’d do. Other days I find myself sitting in thought, either basking in memories or trying to hold back tears of what life might be like if he was still here with us.

I don’t think I have an early memory of Bryant in particular. From what I remember of being very young, I remember Bryant being just like me. I remember us having fun, laughing, exchanging in typical sibling rivalry now and again. I feel like that never really changed either. I remember being in elementary school and still never seeing him as disabled. I mean, I knew he was in a wheelchair, I knew he got sick a lot, I knew he didn’t eat food like everyone else, but despite all of that I can honestly say that’s not how I defined him. He is my brother, and that’s how I defined him.

The only times the disabilities shined through for me was when he was really sick. Sometimes even if I felt like he might get really sick. I remember going through old diary entries and one was from a trip we took up north. I was probably 11 or so, maybe a little older, but I wrote that he was sitting next to me in the van coughing, and it made me nervous. Not nervous as in uncomfortable, but just nervous that something bad would happen. I don’t think I ever thought about him dying, since he was such a huge, solidified part of my life, but I do think I understood something bad could happen. Like the hospitalizations that I could see draining my parents, and could sometimes feel draining me.

Sometimes I liked being at the hospital. I knew being there meant Bryant was either sick or there for an appointment dealing with his health, but I think because I had grown up around it, my parents came up with ways to make it less scary. Being at Dartmouth in Lebanon, was fun because of the pizza we got, and then the soft serve ice cream was always the highlight. Sometimes we’d go into the gift shop, which to this day I can almost perfectly navigate and imagine in my head, and get something like a stuffed animal or candy.

Sometimes I remember catching myself looking forward to the Dartmouth trips, and guilt would wash over me. Like I said, I knew what those visits meant for Bryant and my parents, but looking back now, I think that it’s a good thing. My parents were able to show me that those visits were to help Bryant, but they didn’t have to be depressing and like a chore. That helped me look past his disabilities throughout his life like I said before. Everything always seemed normal. Not his or her normal maybe, but my family’s normal.

As I got older, into middle school and high school, my relationship with Bryant shifted. Same with my family in general. I think that’s what hurts the most when I have those days where I just think of past memories or if he was still alive. I regret not being around more, or spending more time with him on Youtube or watching his movies. What had I been so busy with? Stupid Twilight stuff? Friends who might not be around tomorrow if something better comes their way? I didn’t know he was going to die. I never thought there’d be a day where I’d be sitting in his room, looking at his picture, being so afraid of losing memories of him. Everyday I get farther away from the time when he was alive. That’s what scares me so much. I’m scared I’ll not forget him, but the memories won’t be as vivid. I wish I had made more, I wish I had at least had time to make more. Why did he have to die when I was busy being a stupid teenager? I still am in that state though, of being busy, distancing myself unconsciously from family to make my own life. So, then I think would things have changed? Would I have gotten farther away from him the older I got? Making his passing even worse and my soul full of even more regrets and guilt.

That’s the problem with death I guess. There never seems to be enough time with the person who passes. And I tell myself that, that I loved him, and I always will, and that the times we did share were amazing and meaningful. I guess it’s never enough though. Not enough to get rid of the days where I get lost in my mind and feel overwhelmed with grief.

I could write forever about memories and experiences with Bryant, which makes me feel better. Looking at pictures or watching home movies temporarily relieves the guilt and frustrations I think. I feel like I can almost transport myself back mentally to whatever picture or video I’m looking at. It’s almost like a type of therapy for me. I can let go of the negative emotions and relive those moments for awhile.

Unfortunately reality always kicks back in, and I find myself constantly analyzing my life. And I kick myself often for letting certain people or things drag me down when I remember how much Bryant impacted my life and views. I wish I could be as strong as him, or I could live life how he did. I always say I try to in papers I write about him, but do I really? No. I feel like I am too weak of a person to be as strong and amazing as he was. I feel like a disappointment a lot of the time I think. I try and do well in school, try and act or seem independent with money and work, but I feel like it’s never enough. Not for me or my parents. It’s like I’m stunted in a permanent teenage state of mind. I want to rise above it and reach that level Bryant was at, but it’s always out of reach.

I miss Bryant everyday, for more reasons than I get describe or begin to. I think I’m still in the early stages of grieving, and a lot of things have yet to even begin to be resolved. I hope someday I can accept everything and move forward with him still with me.

Saturday, November 5, 2011

Bryant Paquette

Memories ...
I went by the Moore Center to pick up Emily's check yesterday.  You would be so proud of her and what she's doing. She has so much empathy and caring ~ they love her there.  So as I was picking up the check, the woman says to me "Is that you" and points to the picture of you and I which hangs in the Moore Center reception area.  And I said "yes".  It's such a great picture, you and me on the ramp.  It brings back so many memories and I am so thrilled that it's up at the Moore Center.  Other people have commented on it before, when they visit the Moore Center it's one of the first things they see :)

Emily is in the process of doing a new slide show with new pictures (well ones that haven't been scanned into the computer yet).  It's going to be set to the Muppet Movie's new soundtrack, which is mostly re-do's of all the 'old' songs that you loved so much.  Like Rainbow Connection.

Which brings me to other memories which are not as easy or happy.  We went to the Burlington Mall last night.  I remember the first time we went there with you.  We were so excited because we had found out that there was a Rainforest Cafe there and you loved the one in Disney so we were just so thrilled to go!   And we used to go and meet our friends from RI there and you would love to see the fish in those big tanks and watch the animatronics.  

This time we went for Liam.  He wanted to get another Lego set and he likes the Lego Store.  And we like the Cheesecake Factory now.   We walked around the Mall and though unsaid, your father and I did not even mention the Rainforest Cafe.  We can precariously close to it; but didn't look at it.  I can't do it.  I know it should be "happy times" because the memories are just so happy but for some reason it's not, it's depressing and aggravating because it's just so unfair that you weren't there with us.

Emily wasn't either.  She was on her way to the Cape with Eric.   They were going to try and meet us but it didn't work out.  And that reminded me of the time you were so little and so sick and you were at Floating Hospital in Boston and for some reason we went to the Cape ... I don't know why and it made me mad to think that we had left you, even for a short while alone.   We had stopped at the hospital on the way and then again on the way back and for some bizarre reason I cannot access the memory except for those details.  I know you were very sick at the time but I am finding that some of these memories are 'locked'.  Probably for good reason.  I try not to dwell on them because it just makes it worse .... it's so unfair that you had to go through being sick and all those surgeries and hospitalizations.

Which brings me back to the Moore Center picture.  Despite that rocky and rough beginning, you chose to live and fight and you chose to try and make a difference in advocating and teaching people about life.   I was so busy yesterday, doing so much stuff, and then Emily texted me and asked if I could get her check.   It's a hassle, Liam was out of school and with me and it's tough getting in and out of that parking lot.  But I did it and now I realize it was a good thing, probably saved me a major meltdown to see you in the office, showing what you became and what you did with your life.

It's baby steps Bryant.  And each day, I can be up and down a thousand times.  It's so hard to not have you here that at times it's actually debilitating physically and emotionally.  And then there are the moments when you just shine through all of it.  Thank you for that.   I miss you so much ~ but yesterday and days like that show me you are still here, guiding and helping me.

Love you, Mommy xo xo

Wednesday, November 2, 2011

Snowtober & Epiphanies



It's November - we have snow on the ground ... had a Halloween Storm a Nor'Easter blow on through.  Two feet of snow!  We lost power for a day or so, but thanks to you, we had the generator and it worked beautifully.   I am amazed to think of all the ways you continue to touch us Bryant, all the things you taught us.  I am in the process of making plans to be away during the awful time in March when you left us physically.  We are hoping to go to Disney for a bit and then head to the Keys.  A friend has generously offered us the use of her home and I think it will be so great to go there, knowing how much you loved the sun and the beach.  And, as a bonus, I will get to meet this amazing person.  She has a daughter who is like you and I can't wait to meet them.  I think it will be good for me to meet these amazing people in person. I am also hoping to see some other friends in Florida who I recently met through the CF organization.  As one of them put it, the most amazing group of women I NEVER wanted to meet.  But I did.  That's like a lot of things Bryant.  I never would have wanted, but they happened, and I did.  Of course, I was always the better for it, especially when it came to you and the life lessons.  But now that you're not here physically, it's just so difficult and then come the moments, almost frozen in time, where I see you and realize you are still here - in spirit.  The issue is that they go by so fast, and I do wish I could "freeze" them, but they slip by and I just have to wait for another one.

Lately, Emily has been busy making a new slide show so we've been going through the albums.   Just so amazing to see you so full of life.  The other thing though, is to see myself so full of life and this family so full of life.  Now it seems, I am just a shadow or shell of who I was.  It's kind of freaking me out now; realizing we are heading towards 3 years and it's just so painful.   While looking through the pictures, obviously we are trying to go in order.  So first is the arrival of Emily and then Julia and finally Liam and you have that look in your eyes, like "ARE YOU FREAKING NUTS" another kid?  And I told Emily last night, you know, Bryant hated crying.  So it seems so sad that is what I do now.

And then looking at myself in those albums, with you and with your siblings, so full of life so full of promise, refusing to give up, refusing to ever take "NO" for an answer and just living life with you on full throttle.  Now I guess we've slowed to a crawl and I think it's a pretty darn good day if I can get out of bed sometimes.  Then there's a flash of the 'old' me and I guess last night was one of those epiphany nights.  I slept with your pictures all around me in the bed.  As if maybe you could breathe life back into my weary soul and spirit.  I feel selfish because I know I had 20 years with you; and I should be thankful for that, not bitter and angry because you are gone.  That's why I think this Florida thing will be helpful.  It's not running away; I know that never works.  It's more like I am honoring your life by understanding that living is what you want and what you taught me.  The vision of myself in those photos, with you and Emily and Julia and Liam and your father; the amazing things we accomplished, it's like they are just vapors now.   So the question is, will I allow that?   Should I allow that?  Can I even control that?

The answer is yes and no.  I realize now there are bad days when it's just gonna suck.  But I am going to try and live up to the pictures and give it a go, for you Bryant and for your siblings, where you spirit shines every day.   It's interesting, because you were my first and you welcomed the other ones as they came.  But you had rules and conditions.  No crying.  Just laughing and fun.  And you introduced them to your games and your videos and your amazing sense of humor.  And they introduced you to their things.  Like Emily holding the wand of the bubbles over your trach so you could blow bubbles or pulling you around the house (and then you pulling her using your wheelchair).  And loving them, loving us.  So in these little windows of time, when I see you clearly, I grasp them and try and hold on, futile of course.  The only real way to hold on to you is to live the life you wanted me to live.  Stay tuned Bryant.  I will try and live by your rules.

xo xo Mommy :)