Friday, December 28, 2012

Beautiful To Me

Joubert Syndrome has brought us in contact with people all over the world.  For most of us, the only thing we have in common is the molar tooth sign on the MRI that gave our child the dreaded diagnosis.  Other than that, there would be nothing else that would have our lives cross.  Mike and I belong to a Facebook group of JS parents around the globe who share their children's latest milestones as well as their concerns, and more often than we'd like, who mourn with each other over the loss of some of these beautiful, precious family members affected by this ugly condition.

This group of people is the most loving and supportive group I've been associated with outside of family and church.  But several times, I've contemplated removing myself from the list because I would often be so burdened by what other families were going through, that I would struggle with anxiety and sadness even if Marcus was doing well.  But I'm thankful for remaining in this network of parents even if my activity level is minimal.  It's an incredible high to watch videos of the preschooler just learning to crawl, or to see a young man participate in the Special Olympics, or to read a Facebook status saying their child's medication dosage has been lowered after a kidney transplant.  And what a privilege it is to pray for the parent and her child who had to spend Christmas in the ER or worry with the mother who is anxious about her son's latest labwork, and plead to God for the nonverbal child who won't stop writhing in some unknown pain.

A few days ago, a family in Louisville, Kentucky was featured in the NY Times.  The father, a high school physics teacher, makes a daily impact on his students not only with his incredible teaching style, but also his sincere love for them.  This father, Jeffrey, has a son named Adam who has Joubert Syndrome.  After watching the video of their family and seeing Mr. Wright care for his son, I couldn't stop crying for about an hour.  Many thoughts fought for my attention at once.  Top three:  I'm so thankful for Marcus.  This family is beautiful.  I'm honored that they could represent our small group of ailing, sad, yet triumphant people.

But the chord that struck the strongest in my heart was that the world gets to see the weight that our hearts carry.  Marcus does not suffer at all like Adam.  He has come such a long way from his self-injurious behavior that plagued him in his younger years.  He is able to talk and play and even walk now.  But for me and Mike, a good portion of our trials is watching and praying for others who really are faced with the daily hell of seeing their loved ones suffer so profoundly by the same rare condition my son carries in his genes.

So now, many more beyond our quaint little group get to peak in and see what Joubert Syndrome is all about.  And really, the Wright family show us the beauty in what most of the world would look upon with pity and fear.  Jeffrey's undying love for Adam and Adam's equally fierce love for him is so evident, even through the helmet, the wheelchair, the sign language, and the perfectly intelligent and able young man trapped inside his uncontrollably jerking body.

If you are reading this, please watch the video.  You will be amazed and astounded that such a beautiful family exists.  I'm honored that they could represent a little group my name belongs to.  I'm honored to know so many like them.
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