Sunday, January 22, 2012

Tools for the Journey #18 - Puff of Smoke

“Your son has had a stroke.” I couldn’t believe my ears as the doctor told us the horrifying news. Our happy, vibrant, joyful, 4 year old son, YuYu had only been home from China for six months and had no other health problems. How could this be happening to our precious child? In a puff of smoke our lives were changed forever.

With tears in my eyes and arms with every ounce of my protective ‘mama-bear-ness’, I called a friend in Boston who is a pediatric neurologist. She instructed me to get a copy of YuYu’s CT scan and FedEx it overnight; she would have the pediatric neurology team at Children’s Hospital look at it the following morning. The miracle of this friendship would translate to a quicker than normal diagnosis and treatment plan being put into action for our wee boy.

Within 24 hours we received a phone call from Dr. R. Michael Scott, renowned pediatric neurosurgeon, who told us YuYu had moyamoya disease. Moyamoya – it sounded comical, like a fruity tropical drink with a cocktail umbrella, not a horrid disease which could rob my son permanently of his mind and his body due to severe strokes.

Moyamoya is a Japanese word which translates as 'puff of smoke' in English; the phrase describes how affected blood vessels look on an angiogram of the brain. Moyamoya is a rare disorder which is significantly more common in people of Asian descent. The disease is characterized by progressive narrowing of the primary arteries which feed blood to the brain and leads to irreversible blockage of the carotid arteries as they enter into the skull. The process of blockage once it begins tends to continue despite any known medical management unless treated with surgery. Without treatment the repeated strokes can lead to severe functional impairment or even death. It is a disease which tends to affect children and most commonly causes transient ischemic attacks (TIAs), migraine headaches, strokes, and seizures.

Dr. Scott told us our son’s disease was significant on the left side of his brain and he would need brain surgery as soon as possible. He also told us it was only a matter of time before the right side of his brain would become affected. I spent all that night on the internet reading everything I could find on moyamoya; the symptoms, treatments, and the long term prognosis after surgery. What I read shed light on how stunningly fortunate we were to get an accurate diagnosis so quickly. Very few pediatric neurosurgeons in the United States specialize in moyamoya and its treatment and amazingly Dr. Scott is the pediatric neurosurgeon who developed the intricate and cutting-edge surgical procedure YuYu needed to save his life!

With our son in our arms and no small measure of fear in our hearts we flew to Boston. Dr. Scott and his remarkable team did the cranial revascularization surgery YuYu needed. The nail biting agony of the 8 hour surgery was behind us soon enough, and recovery was surprisingly quick, but it would be many months before we allowed ourselves to truly relax.

Twelve months after his first stroke YuYu had disease progression on the right side of his brain; this meant a Med-Flight back to Children’s Hospital Boston for more brain surgery. Unfortunately the second surgery was complicated by a severe second stroke during the surgery and our dear boy awoke with paralysis from head to toe on the left side of his body.
After six long weeks in a rehabilitation hospital (where one or the other of his parents was always at his side) YuYu was finally permitted to come home. Slowly over the next few years with physical therapy, speech therapy and sheer determination on his part, he gained back much of the function he had lost.

As frightening and dark as those days, months and years were, today YuYu is a happy, healthy boy whose default setting in life is still ‘joy’ even after all he’s been through. He seems to have an innate capacity for gratitude and effervescence which inspires everyone who knows him. The State of New Hampshire even granted him the Champion Among Children Award in 2013.
There are no guarantees in this life; there aren’t any guarantees when you adopt a child, just as there are none when you give birth to one. When you decide to embark on the journey of parenthood you open your heart wide and then you dance with the children you’re blessed to have arrive in your life. Loving your child isn’t about biology, it’s about something larger and deeper and more humanly, emotionally, spiritually transcendent than biology. The evidence overwhelmingly suggests it has to do with something far more profound than mere biology; if it was simply about biology we’d have many more well-adjusted humans walking among us in the world today.
This being said it never ceases to amaze me when well-meaning people question us about whether we have regrets about adopting YuYu given he ended up with so many medical problems. I call this the “adoption double standard” because one would likely never ask a biological parent if they were sorry they gave birth to their child simply because their child developed a medical condition. The narrowness of this view stuns me on every level. Each time someone asks this question my reply is the same: This precious boy is our son. Stop-full-stop. We have no regrets; we love him absolutely, we are thankful for the joyful gift he is in our lives and are grateful that for today he is healthy. Tomorrow holds no promises for any of us so we choose to stand squarely in love with our son today and leave tomorrow where it belongs.

As we head in to a new year I hope this ‘puff of smoke’ story will provide food-for-thought about insidious and potentially restrictive assumptions we sometimes make along the way in life...both in relation to our own lives and the lives of those around us.

Our adoption journeys taught us much about the startlingly narrow assumptions people make regarding how much love someone might have for a biological child vs. an adopted child. The example I give when asked about this is: my husband is not a part of my biological family, yet I love him as much as any member of my biological family. Marriage and adoption are examples of a choice to love, a promise to love, a stand for love and are a larger definition of 'tribe' than just bloodlines; in many ways it’s a larger embrace.
'Puff of smoke' is the translation of moyamoya into English from Japanese.
The medical phrase emphasizes the dangerously narrowing and blocked blood vessels of the brain which can lead to paralysis, stroke and even death. This narrowing is a loud warning sign that something must be done in order to save a life at risk.

In this context 'puff of smoke' is a metaphor of a symbolic narrowing of mind or restricting of heart. At one time or another we’ve all had some narrowness of mind and heart whether we want to admit it or not. This smoke signal, if you will, is meant as a shoulder-tap about the importance of mindfulness, of being (and staying) awake, aware and open rather than restricted or blocked – a reminder to flow. Perhaps once in a while we all should do a mental 'angoigram' in order to detect any warning signs indicating any narrowing of heart and mind.

As we journey into 2012 - The Chinese Year of the Dragon - (The dragon is the fifth sign in the Chinese Horoscope and signifies luck...) there is the choice to be receptive rather than restricted. I notice when I’m open and willing to have new eyes, even on old problems (old ideas or flawed/restricted opinions), then new solutions and new information are more easily received. My aim in the new year is to stay awake and aware on this heart-wide-open adventure called Life. Perhaps this year I can find ways to let the Dragon "burn away" any of my older more restrictive views and make way for new, more open, flowing perceptions which we’re each capable of...remembering things can and do change as quickly as a puff of smoke!

Xīnnián hǎo

Have a prosperous and good year.