Day 64: Brendon’s Bravery…

 

I have a friend who is ironically named “Genie”, and I only recently met the magical person in her life.

Have you ever crossed paths with someone and you know there is a reason, but it takes some time to be revealed?  Such is the case with one of my good friends and coffee klatch companions.   Every weekend I meet up with a group of girlfriends at the local Starbuck’s and we indulge in some very fascinating conversations with a warm caffeinated beverage.  It seems to help us find our smiles and leave our worries behind.  I was drawn to Regina, “Genie” for short, because I could always identify with her witty sarcasm and down to earth personality.  She is one of the quieter members of the group, but when the topic strikes, her sense of wisdom and clarity is astounding.  When we first started having coffee, I could tell that there was heaviness in her personality, a sort of constant concern.  She often would contribute to the conversations, but didn’t often smile in the beginning.  As the weeks went by and the conversations became more adventuresome, she began to let herself go and her smile became contagious.  I remember leaving those coffee sessions at ease that Genie had come out of her shell and appeared energized–all the while not knowing any of the details of what could possibly weigh down her spirit like a cinder block tied to her soul.  And then one day….

One day, her minivan pulled up in the handicap spot and I saw her mighty strength as she hoisted a wheelchair from the back of the van.  She opened the passenger door and with two arms she wrapped them around a young man and with all her strength and a determined look on her face, she lifted him and placed him carefully in his wheelchair.  As she approached the door, I ran to open it, wondering who this was.

Genie introduced me to “Brendon” her 19-year-old son.  I responded that it was great to meet him as they bee-lined to place their order.  As I watched them, It was like looking through a camera lens that comes into focus, it all made sense.  The look of exhaustion, the heaviness in her demeanor, the sarcasm… In that moment I had an even greater respect for Genie and the challenges she and Brendon face.  I extended an invitation to go to coffee with the both of them to find out more about this dynamic duo.

In the interim, I would come to find out that this young man was born with a rare condition called, ataxia-telangiectasia, ATCP. According to ATCP.org, ATCP is “is a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer.”   See more at: http://www.atcp.org/AboutA-T#sthash.pYB6VwTp.dpuf  This disease compromises the immune system, making Brendon susceptible to many illnesses and fighting those illnesses that would be easy to fend off in a healthy person, can sometimes be the difference between life and death for him.  Brendon has difficulty seeing as he is virtually blind, and the reflex that most of us take for granted, swallowing, is especially hard for him as his muscles are in a weakened state.  Brendon has involuntary hand movements and when he readjusts his glasses, they are often accidentally knocked off of his face or bent, which Genie just sarcastically laughs off as she describes how often they are being fixed.  Brendon wears braces on both legs and he also has a feeding tube for regular feedings.  And with all these hurdles, and the many more that perhaps I have missed or weren’t discussed, there was every reason to be sour, despondent, sad or even depressed. But Brendon and Genie just don’t approach life that way.

Genie ordered Brendon a most delicious Frappuccino and you would have thought he was in heaven.  Then again, Brendon seemed to always smile.  As we sat and talked, his speech had a noticeable impediment, but I understood all that he said in his determined and articulate voice. Cognition is of no detriment to him.  I sat and listened to him describe his favorite foods, his favorite things to do and listened to him describe the best places he has visited so far…

Favorite foods: Corn dogs, chocolate, s’mores!  What is not to love about these choices?

Favorite activities:  Brendon used to horseback ride from the age of 2-15, but it had to end as he grew out of the horses he was with and Genie and her husband have not been able to find an adult adaptive program for horse-back riding.  It was hard to hear that this love of horses had to end, since Brendon’s face lit up when he talked about the horses, “Blackjack” and “Piper”, that he rode and how much he enjoyed it.

Brendon has also done adaptive skiing, archery, adaptive bike-riding, adaptive mountain climbing, adaptive golf, yoga, rafting, whale watching, going on walks, traveling, and so much more!  As Brendon talked about the activities and experiences he has had, he spoke about them as if there were a list that he ran through, not once did he give a hint of not being content or fulfilled.

Favorite places he has visited:  Lego land, Disneyland.  Brendon’s face became animated as he explained he met a blue Power Ranger when he visited Disneyland when he was younger.  Then he quickly jumped to the Legoland experience, also in his younger days and how thrilled he was to have received a Lego license to be able to drive one of the Lego cars.  They were experiences that he remembered minute details about that were thrilling and memorable!

I asked Brendon if there was anything that he still wanted to do in life.  He patiently pondered my question, then looked up at me and with his brilliant smile, said, “No…”  The expression on his face said, “I am more than content!” I sat back in my chair feeling a bit confounded.  I thought, “Not one more thing?”  I went on and asked him what a bad day would be like, all the while knowing that he has to sit in a wheelchair all day and that has to lend itself to sores and pain.  Again, Brendon gave the question deep thought. The he looked up at me and just laughed and said “There are no bad days!”  I smiled with him but deep inside I was even more confused.  Genie looked over and said, “The only tough days are Doctor and blood work days”.  As I took notes, trying to be discrete, I had absolutely lost my train of thought with his answer and nervously reached for my drink as I couldn’t understand Brendon’s line of thought. It was at that moment that I changed the conversation and asked Brendon about what he enjoys doing when he is home.  He quickly responded that he likes to play video games with his brother.  He went on to say that he enjoys when his brother is home.  I said, “You and your brother must be close.”  He said, very emphatically, “He annoys me sometimes but he is my brother and I love him!”  Heavy sigh….  Brendon went on to explain how he and his Dad and brother go on adventures on the weekend and have some male bonding time, aka: they go to the ball park or watch “dude” movies together.  Brendon’s Dad coaches Brendon’s adaptive baseball team while his Mom and brother cheer him on.  Brendon sat and drank his Frappuccino and smiled as if to enjoy sharing a sip of his life with me, and I couldn’t help but sit and appreciate this amazing spirit.

I asked Genie, please describe to me three things about Brendon that makes him so unique:

She answered: 1. He’s funny!  2. He is quick to forgive 3. He has very thoughtful feelings.  And she went on to say, he absolutely loves chocolate!

 

It was clear from just our interaction that he is a funny guy. He shared a hilarious, yet touching story about when he met someone new and they automatically assumed that because he was in a wheelchair he did not have cognitive thought.  The person approached Brendon and said in a baby voice, “Hi there…  can you smile for me?  Huh, can you give me a smile?”  Brendon looked at him, smiled and said, “I can poop too!”  It was hard not to laugh when he told that story, but also sad at the realization that others, grown adults, would assume to treat him as less than he is.  But as I would come to find out, it isn’t just grown adults that have left him feeling disparaged and devalued.  No, he recollects being at the store on a regular basis and frequently having little children point and come up and touch his wheelchair or him as if he was less than human. All the while, their parents stand by and not correcting their behavior.  In that moment, it was the first time since we started our conversation that his smile suddenly melted away and an obvious look of disappointment emerged.  I noticed I had touched a nerve and so I looked at Brendon’s mom and said, “If you could send a message to the world about how to behave when seeing someone with a disability, what would it be?”  Genie went on and explained that parents need to teach their children to respect those with disabilities that they need to show respect of person and space… parents need to teach their children that just because someone is in a wheelchair does not mean they cannot see, hear, think or have feelings.  Genie took a deep breath as I could tell this was an issue they have dealt with for far too many years, one that could not be fixed by her alone, one that they constantly faced, but one that needs to be addressed.  It was then that I knew I had to change the conversation one last time.

I turned to Brendon and asked him to tell me one good personal memory he has had.  It was following that question that his brilliant smile reappeared and he recollected the day he saw “the most beautiful girl in the world.”  He described how she approached him and without hesitation or second thought, he looked at her and told her, “You are the most beautiful girl in the world!” He went on to say, she will always be the most beautiful girl…  It didn’t matter at that point who she was or what the circumstance, I told him I thought that was the bravest story I have heard, with nothing to fear and everything to say and with no hesitation, I am sure she felt like the luckiest girl to have been paid such a compliment from such a brave young man… if more men were like him!  Brendon didn’t respond, but blushed and smiled.

 

Brendon’s words, innocence and smiles touched me deeply by the meeting’s end.  You see one important piece of information that I have failed to disclose thus far, is that Brendon’s time on earth has been longer than most with his condition, and will be shorter than all of us.  Brendon’s Mom wakes up every day with the stark realization and fear that only those in her situation could possibly understand. There will come a day, more likely sooner rather than later, that she will have to say “Goodbye” to that young man who has brought joy, laughter and love into her life.   The fear that her son will pass on is the cinder block that weighs on her soul.

Genie has given every ounce of her time, love and devotion to a young man who against all odds, just recently graduated from high school like any other child, takes on challenges without a second question, endures pain, discomfort, and most likely fear without an ounce of acknowledgement, is braver than most knowing how the story will end, and appreciates every day he is given as if it were his last.  Genie and her family have raised Brendon from the day he was diagnosed knowing that most children do not make it past their teen years.  They have spent many long days and weeks at the hospital with medical issues, yet, to Genie this is just what you do for your children.

As I helped Genie to the car to transfer Brendon into the front seat, she apologized for looking and feeling tired.  She went on to say that she didn’t sleep well and had to wake up early to take care of Brendon and some other obligations.  She said to Brendon, “You know me, I would love to sleep in just one day.”  Then Brendon replied,  “I don’t want to waste my time sleeping.”  Heavy sigh… I couldn’t help but get a bit emotional but tried to hide it as best I could.  I thanked them both for sharing the afternoon with me and said “Goodbye”.   Fighting back tears, I whispered to myself, “Of course you don’t want to waste a day… I get it!”

It was on this day, that unbeknownst to me, I would meet bravery.  A Mom and her beloved son with a loving family to share, facing an unconscionable situation where love and patience have been tested over and over again.  Despite the challenges, their love and patience have grown stronger because of it.  A young man who chooses to be brave, chooses to have nothing but good days and early rises, who chooses to embrace all the possible opportunities life has to offer, who has the courage to say what needs to be said, and who chooses to always smile even though the world doesn’t smile with him… A young man who was gifted to his family perhaps to teach us all that life is short for all of us, and shorter for others….that we are in control of how we react to certain situations.  Brendon, Genie and their family, remind us all that being positive and embracing life despite all the hurdles we face, is what makes the journey one to remember and grow from.  I still think about Brendon’s comment that there are no bad days… he is right, each day is a gift, and just like a camera coming into focus; it’s all in how you look at it!

Blessed by the magic this Genie shared with me… wondering what tomorrow will bring!