Sooooo... I was thinking and thinking and thinking about you and your life and how to explain to people how you lived and why we miss you so much. Those who know you, of course, know why, but in general to find a way, maybe even to myself, to encapsulate
you.When you were first born, they told us you were deaf and blind and would probably never have
purposeful movement. Pouring over some of your oldest reports ~ some from the day after your birth ~ it was fairly apparent that most did not think you would do much, if anything. One report describes in detail the marked abnormalities and sums it up with these exact words:
Whether purposeful movement will develop in the future cannot be determined at this time, but seems very unlikely. However, as the reports went on over the next few years, I found one that was describing the incredible malformation of your brain again and then this one says:
"The CT scan reveals a parallelogram shaped calvarim with marked hypertelorism and an enlarged space between both orbits which houses the medial frontal lobes. The left hemisphere demonstrated no gyral pattern and has a very small centricular system to a moderately enlarged one in the right. Yet, on exam, he uses all four extremities without any specific abnormality of strength or power."So as I pondered all of this, my epiphany is the following. When you were born, we were given no hope. Yet, I recall one day, looking into your eyes and seeing something I had never seen before, nor could really describe. I remember saying to your father "he doesn't seem like a baby". I meant this as in your soul, your spirit, your eyes. Looking into them, you seemed so much older and so much wiser ~
The epiphany of sorts is that although you were not supposed to see or hear, to have vision, hearing or purpose ~ that is exactly what you possessed and exactly what you bestowed upon me. And anyone you chose to let in, anyone you chose to give your "Bryant Vision" to. Kind of like magical glasses. Magical Ears. Everything with you was different, unexpected and magical and, in fact, had some type of purpose. But it wasn't obvious. You had to get through all the other "stuff" first, to see past it. That is what was so interesting about the medical report. The doctor went through all the "stuff" and then "saw" past it in what you did. How you defied the very words
written on the paper.
What you gave me, though, Bryant, was something far more powerful and sometimes exhausting. Yet I try to be like you. You always had a smile, a truly infectious smile and a sincerity about you that could not be denied. And that day, in the Neonatal Intensive Care Nursery, the Magic Glasses and Magic Ears were put on. The issue is, they cannot be removed. I see everything now as through those glasses and with those ears. But when you were here, it was just so much easier to have them because I had you to share them with, after all, you were the reason for them.
Therefore, when I try to explain to people about you ~ life with Bryant ~and how life without you physically here, it is impossible because I do not believe a word or words exist in our language to explain it. I grow exhausted trying, struggling with words and descriptions and it always falls flat, making little to no sense. It's like I was given a different view, a different angle and everyone else is sitting somewhere else. The view I have had with you, from you, with my Magical Glasses and Magical Hearing is always glorious and incredible. It's very much like that medical report and how you lived your life without any specific abnormality in strength or power. Perhaps to the average person, that would sound
preposterous. Can I not "see" you had challenges, you had
disabilities, you had serious medical conditions? The odd thing was I never really "saw" those as much as "dealt" with them, like the report, the words were there, I knew what they said, but I always knew what you did and it seemed to mute the obvious and give way to the incredible vision of life lived in strength and power. You empowered yourself and those of us around you who got to put those glasses on and get Bryant vision. See things in ways no one else does, take the time to listen, to hear things in a way no one else does and certainly, to live with purpose.
So, now you are gone physically, and I am permanently changed by the Magic Glasses and Magic Ears. My question now is purpose. What to do with them? How to share them? How to live with this "view" which is almost always different from everyone
else's? Some people know, some people understand, thank God or I fear I would probably go insane. There are others out there who have had the incredible blessing of having you in their lives and there are those who have children who possess the ability to hand out these glasses and ears.
I re-did the slide show / video to capture all the "stuff" we did. But it wasn't the stuff or where we were, as much as it was the way we saw it, the way we heard it and the way we did it. Bryant's way. And doing it your way always seemed to bring some type of surprise that was one of those "aha!" moments. I think about that a lot now and when I see the video, I can think of all the memories around the picture, not just the photo op of you here or there, you know, like playing the game "Where is Bryant today" ~ since you went almost everywhere and in each picture it's some new adventure. But those glasses and those ears and the
purpose and intensity in which you lived your life was transferable to us, those of us who were around you to "get" it. How amazing is that?
What is also amazing while wearing my glasses, courtesy of you, is seeing how things can always be different, how they can always be viewed from a perspective or angle if we are only willing to do so. And even with that, I'm not sure if it's something that can happen without someone like you to transfer that ability. I often wonder what I would have done or become or been like had you not been in my life. I do know that life without you now is hard. But that is no surprise. I always knew that would be the case from the first time I saw into your eyes and knew something was up. I just didn't have the words for it. Still don't. So I'll settle now for the glasses and ear and purpose
analogy I guess, because it does make sense to me. And when I am annoyed or wondering why no one else can see what I am seeing or thinking or feeling or hearing, I have to remember, ah yes, they do not have the glasses!
Thanks Bryant for the Magic and Purpose. I miss you and love you Always,
Mommy x0
xo
