School Essay

I tried to think of what I could write about that did not involve Bryant, since I have spent most of my time writing about him. However, because the situation lasted 20 years, I can't really think of anything "relevant" though other than cold hard facts that have affected my life and my family's life as much.

As already discussed, Bryant was born with his chromosomal issues. I remember the on-going of the "parade of doctors" who came in while he was in the NICU (Newborn Intensive Care Unit) at CHaD (Children's Hospital at Dartmouth). The sum of the information was the "cold hard fact" that he was very sick and probably wouldn't live more than 24 hours.

As time progressed and he continued to live (he spent 4 months in the unit) one doctor, a Neurologist told us that Bryant was unique and there were no matches for him anywhere, he had no syndrome so no one really could predict what would happen. However, based on "cold hard facts" in this case MRI's, CT scans and other medical testing, Bryant was what he was and the Neurologist said "Take him home and love him".

The earliest report we have is when he was a day old and it is an MRI of his brain which suggests severe malformation, absence of a gyral pattern in the left hemisphere, absence of the corpus collosum and other "errors" in the formation of the brain. The doctor says in summation "Whether purposeful movement will ever occur is doubtful". Flash forward to a report at about 2 years old and it's the same words, all the same things are scene on MRI, but the last sentence says "While the above suggests severe malformation, the patient moves all four extremities without any impairment of strength or power".

The cold, hard fact, was that Bryant would have issues resulting from his condition, but the other cold hard fact is that we are all individuals and Bryant proved otherwise. Anyone reading the brain scan would come to the "obvious" conclusion that whoever possessed said brain would have "no purposeful movement" since there was really no pattern to the brain formation. Individuals with "normal" brains on MRI have more limiting conditions ~ so the interpretation would make sense.

Most of what Bryant did, defied the cold hard facts. However, he was medically fragile and that was another "Cold hard fact" to live with every day. He had over 25 surgeries, none of which ever got easier, in fact, they got harder as we gained more knowledge (for us emotionally). Yet, Bryant sailed through all of them, including an 18 hour procedure to do major intra / craniofacial work.

What we did with the cold hard fact was to try and live and adjust our thinking to the task(s) at hand and when he was healthy, to live to the fullest. Of course, Bryant was the catalyst. He had a zest for life which got us past the "facts" that he shouldn't be doing this or that, because he was doing it. The doctors marveled at him and although most do not like to fling the word "miracle" around, we heard it many times throughout his life from the medical doctors.

Having a child with so many challenges, however, makes you a different person and makes you realize how unique each individual is. It also exposes the "myths" of cold hard facts about how we should appreciate what we have because others have less, and bla, bla, bla. If you have to be told that, you probably are not capable of it. Just because someone seems to have "less" it does not mean their quality of life is worse than someone who does not possess those disabilities.

Learning and living that taught us a lot about life and how to treat other people etc. We always took our cues from Bryant, because he seemed to be the oldest and wisest soul and seemed to be the one directing the whole thing. Simply stated, life with Bryant was a journey every day. Despite the facts, he was medically fragile, could die at any time, we chose to view it different, that every day with him and this family is a gift and we have to take the "facts" and do the best with them possible.

When Bryant died, that "cold hard fact" was harder to process and deal with. Death is a cold hard fact which cannot be argued with. I am 1.5 years out and still trying to "deal" with the fact. However, because of the life Bryant lived, I realize that he lived life for what it was and to the fullest extent. Many times, death brings regret and a re-examination of life. During Bryant's life, those were constantly in the background and constant juggling of life's questions occurred. So, when he passed, although my brain did not wish to accept it, I did not feel any regret. It made all of us appreciate Bryant for who he was and how he lived and has made a profound impact on anyone who was fortunate enough to know Bryant.

The reality is that no one knows from day to day and death is a part of life. How we choose to live our lives is something presented to us on a daily basis. Sometimes, it's as simple as giving a smile or a knowing look or kind word to someone who is down and other times it's accepting or asking for help if you need it. And other times, it's just a learning experience where you will make mistakes, and if you learn from them, you can call it a "good day". That's what Bryant taught us.

Many people go through life trying to figure out where they fit or what their "purpose" is or any number of questions about life. Bryant did not seem to have those questions and that is what is most fascinating to me as I review our lives. He seemed to "know" and therefore, was able to guide me, personally, to understand things in a different way from most people.

Despite having medical challenges, Bryant was able to become an advocate and pave the way for others. He spent time in Washington DC advocating and he was an advocate throughout his school years, with me alongside him (for example he was the first trached student to go through w/ a ventilator). Our family was a team and everyone on board with the same attitude and appreciation for life.

I believe everyone has learned from Bryant and we can continue on now from "cold hard facts". It's not as simple as making lemonade out of lemons or something like that, because I don't consider Bryant's situation to be a "lemon". I think realizing that life will throw you many facts, you need to be able to recognize opportunity and appreciation, learn how to adapt to ever-changing things, etc. and be sure to constantly be able to re-evaluate.

I remember this one young man, an advocate ~ disabled by CP and in a wheelchair. He was talking about the City of Boston and trying to navigate that in a wheelchair. So then he said to the audience, "You know a lot of you are going to end up disabled. But you won't call it "disabled" you'll call it old age, but your ass is still gonna need a wheelchair, a ramp, a hearing aid, glasses ...". His point was we all need to understand "cold hard facts" and then try and find ways that make lives better because "life" impacts everyone. Everyone has their issues, whether it would be a disability, death, crime, dysfunction in a family, financial problems, etc., it is something that needs to be dealt with.

We chose, as a family, to live and to just go out and have fun and to love one another. With Bryant gone, that remains our goal. It has made us who we are and has changed us for the better, I believe. His siblings make me proud every day with their compassion and understanding and their love of life too. Bryant made it seem like anything was possible.