Tuesday, June 1, 2010

Update on me and mine

Blog posts for the last couple of months have been less consistent than in the past, so I thought I should bring my readers up to speed (as much as I'm willing and able) on what's been going with me.  Currently, it's one in the morning, and I'm feeling so ready to get things of a blog nature back on track that I don't think I can go to sleep until I've posted this.

Exactly two months ago, my little family went into full on crisis mode as we dealt with an emotional roller coaster related to my oldest child, a son who has struggled all of his life with a condition called Velo Cardio Facial Syndrome.  Never heard of it?  Of course you haven't.  Neither has anyone else except parents of kids with this genetic disorder and the medical personnel who study it.  (I'm not employing hyperbole here.  There are plenty of doctors I've met in my travels who were introduced to VCFS because I told them what it was.)

To give you a quick rundown on VCFS, I can say that it is caused by a deletion on the 22nd chromosome, is present at birth, afflicts 1 in 2000 babies born in the US today, and has a spectrum of about 100 symptoms that can occur to any given child with the syndrome.  For most VCFS kids, those symptoms include heart problems and speech delays.  Some children face problems with their immune systems.  Most develop learning disabilities and lag behind their peers both socially and academically.  In the teen years, mental illness becomes the symptom to watch for.

For my son, Aaron Ray Jr., VCFS was diagnosed at 5 months, just a month after I carried my weak and wimpering baby into a small emergency room in Kanab, UT, and told the doctor that something wasn't right.  She agreed, and we were lifeflighted to Primary Children's Medical Center in Salt Lake, where I would spend the next three days hovering over a child I was told was very sick.  Aaron had a silver dollar sized hole in his heart, a hole that produced a murmur so loud, we were met with what seemed like a nonstop parade of medical students asking if they could hear it.

Aaron's heart was repaired when he was 13 months old.  At 3, we knew the speech delay related to VCFS was affecting him.  At 4, he had surgery to repair his palate and finally began to talk (and has literally...no really, I mean that...not stopped talking since.)  In school, he received speech therapy but seemed to be beating the odds academically.  In his 13 years, I've tried hard to treat him as a normal child, giving him my love and encouragement and hoping always that the more scary aspects of the disorder would pass us by.

Over the last year, as puberty has set in and the demands of middle school have overwhelmed Aaron, it has become clear that VCFS is still with us and that the symptoms that can appear during the teen years have not missed my son.  The words I have dreaded with all my heart since the day I first saw them related to this disorder are now a trial our family has been called upon to face.  A mental illness we are still trying to diagnose is Aaron's newest VCFS symptom, and we've spent the last two months coming to grips with that fact and struggling to find him the treatment that will help him cope with it.

As a student of psychology, I know, cognitively, that there is no shame in having a mental illness.  When a person's body stops regulating blood sugar levels, people don't wag their fingers and shake their heads.  When a person develops a cancer or deals with hypothyroidism or needs an inhaler for asthma, the world doesn't stigmatize it.  As a student of psychology, I know that mental illness is much the same.  The brain as an organ is just as susceptible to illness as any other, and with the addition of an unfinished chromosome, it's more so. 

As a mother, facing a world full of people who look on mental illness as a blight, it's not so easy to remain objective.  As a mother who has worked for 13 years to help a son with more struggles than most, it's a struggle I'm not always sure I can bear.

My last Couch to 5K post highlighted some of the challenges I face in my quest to run.  I wrote that post ready, willing, and able to overcome every one.  I wasn't prepared for this one.  I have not run since shortly after our world turned upside down due to behavior problems related to Aaron's disorder.  My last run was on April 6th.  When race day came, I was still treading water, passing billboards for the event and feeling like my 5K plans belonged in another life.  I did not run it. 

A few weeks ago, I began to think about running again, wanting desperately to pick it back up.  While life is still stressful and many things are still undecided, we had seemed to settle into a rhythm with it all.  I chose to look at my month away from running and my missed race as a bump in a much longer road.  I decided the best way I could turn defeat into victory was to get back on the road and start again.

To my dismay, shortly after that decision, I began struggling with a new medical difficulty of my own, namely, the attempted mutiny of my reproductive organs.  Maybe they're tired of the stress I've been carrying and have decided to go crazy to get my mind off of other things.  Either way, I've spent the last few weeks struggling frequent bouts of pain and discomfort and overcome by sometimes crippling fatigue. At one point, cancer was on the table, but I'm grateful to say a biopsy showed all was well on that front.  I have a surgical consultation this month, and if we go ahead with a surgical solution to my current problems, I've been told I won't be allowed to run for 6 months.  I truly don't know how I feel about that.  I think I hover somewhere between deep sadness and reluctant relief.

So, there you have it.  Confessions of an overwhelmed mother who is taking things a day at a time and hoping for the best.  Through it all, this blog has been an anchor.  I appreciate so much the readers who keep me writing.  I love reading your comments, whether on here or on Facebook.  They help me to know that what I write means something to someone, even if it just means I've given them a laugh for a moment of their day.  That brightens my days, even the ones I don't know how to endure.

Thanks for sticking with me, and here's to whatever is next.