Sunday, May 4, 2014

That's why we do what we do!

Nich comes in through the door holding a grocery bag filled with yummy smelling Chinese food. As he lets it slide down to the floor, he readjusts his balance then ambles his way to the bannister, the classic Duchenne's posture evident in his walk. In order to counterbalance their top heaviness, boys with Duchenne's will stick their stomach out, their heads pulled in to their neck like turtles. They carefully pull up one foot at a time and using momentum, swing it forward, then the other. They tend to swing their shoulders and arms as well to help with the forward motion. I can't help but feel a little nostalgic emotion as I watch him, remembering my brothers when they were much younger. There is a tendency to jump right in and help but that just enables their feelings of helplessness and strips them of their dignity and accomplishments. As much as possible, they should be encouraged to do as much as they can on their own.

I immediately recognize that spark of fun and mischievousness in Nich's eyes as he comes over to say hi. It's the same one my baby brother Mathoni always had shining in his eyes. You always knew he was up to something and it usually didn't take long for him to spring it on you! I resist the urge to wrap him in a big hug because we have only met a few times even though his mom Laurel and I have known each other for quite some time now. His father Ricky comes over carrying Nich's older brother Benson over his shoulder like a sack of potatoes and ever so gently positions him on a kitchen chair at the dining room table where supper is waiting for us. Benson reminds me of my middle brother Lehi; quiet and reserved but with a light of great wisdom and compassion shining in his countenance. His deep love and concern for his mother is so touching, something I had also noticed with my own brothers toward our mother. There is an intimate bond between mother and sons, a mutual respect stemming from sharing such a heavy load. 

Watching them discreetly throughout the supper conversation, I realize they already hold a piece of my heart because they remind me so much of my own two brothers and how much fun we had growing up together and how much I miss them both! But for fear that they think to themselves "Why in the world is this psycho woman paying us so much attention?!" I stay at a socially acceptable distance away. My attention turns to their oldest brother Spencer. He reminds me of my brother Sam. Is it human nature to draw comparisons with something familiar in order to understand and relate to something or someone? Just like Sam, Spencer received the "good X", so he does not have the disease but I wonder if he carries the weight of the implications of it on his shoulders just like my brother did? In my mind, I imagine them both standing side by side; stalwart guardians, protectors and keepers of their younger brothers. They spare no thoughts for themselves but serve their younger brothers with unfailing loyalty along with a healthy dose of an older brother's duty to tease. They are the ones left to carry on the family name.
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Benson, Nicholas & Spencer

After supper, Nich rides on the chair that will take him downstairs to the family den. I'm trying to remember that movie where I've seen this type of chair before. I turn to my teenage daughter for help. "You know that movie with those cuddly creatures and if you feed them after dark they turn into monsters...?" Nich pipes up, are you talking about "Gremlins"? We both chuckle. Ricky comes down the stairs with his sack of potatoes again. Benson quietly and confidently gives directions to family members who pass him the X-Box remote while his father makes sure his son has established his balance on the chair before moving off. I notice he is wearing those plastic braces that my brothers used to wear which support the ankle and foot to prevent the foot from pointing downward and keep the Achilles tendon stretched. The idea is that wearing them hopefully delays the need for the Archilles tendon surgery performed to release the resulting contractures. In the late stages of the disease, both my brothers had that surgery done because their legs would get so tight and painful. 

I watch Spencer interacting with his brothers throughout the evening. They are normal brothers with the usual bugging and teasing but infused with intense patience and brotherly bond. It seems that what boys with Duchenne's lack in dystrophin and gross motor skills, they make up in fine motor skills and dexterity! Watching them adeptly manoeuvring in racing games is amazing! I remember watching my own brothers playing Unreal Tournament. They would both play as one character, Lehi usually doing the strategy and shooting, Mathoni taking care of the manoeuvring and directions. They always had deadly accuracy and it didn't take long for others such as my husband to declare that it just wasn't fun anymore to play with them. No one could come close to their combined skill level!

Laurel talks about their many travels around the world. They realize that the time will come when travelling will no longer be feasible due to the limited mobility and progressing fatigue of her sons but also because of the weight of the power chairs that will soon become a necessity. But wherever they travelled her sons were treated like celebrities; the red carpet was pulled out, they were ushered to front row seats and granted special privileges. One Sunday, the whole congregation stayed after Church to shake their hands and thank them for their inspiration! It warms my heart to think that there are still people in this world who recognize pearls of great prices when they see them and treat them accordingly.

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                                                      Ricky & Laurel with their beautiful family!

I cannot end this post without mentioning Harvey and Marley, their two cats. Not enough can be said of pet therapy! Animals can sense when their presence is needed and they are usually happy to oblige. When one is having a bad day or is suffering, the mere sound of a purring cat or the stroking of a velvet ear or even the comforting weight of a warm body against an aching heart is the best medicine anyone can prescribe!
The evening ended too soon for my taste. The older I get, the more room in my heart there seems to be to accommodate all those who wiggle their way in!

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