"...Not Because (it is) Easy..."

       Over the last two years I’ve been deeply encouraged by figures of history who have done tremendous things, despite illness.  When I was a child we learned about heroic figures such as Abraham Lincoln or John F. Kennedy, but somehow their ailments and struggles were omitted from what we learned.  Perhaps historians felt these facts would somehow make them weaker figures.  Yet, I have found that knowing these figures’ struggles and hardships have left me with an even greater awe and admiration for these people I have never met.  In fact their personal struggles, I believe, make these figures’ stories more beautiful.

       It all started last year when Christopher got a cold and was out of school for a couple of days.  His class was learning about Theodore Roosevelt.  I got several books from the local library and was fascinated to learn that he

Christopher as JFK next to his project for school.

was sickly as a child, and often struggled to breath.  As we read about Theodore and then Franklin (who had polio) I was very intentional about trying to connect how these leaders were able to accomplish great things in the midst of pain, hardship, and illness.  I definitely got the “Yeah, yeah…” response, any seven year old little boy might give.  Yet, it challenged me, as I started to recall other biographies I had read, where people overcame not just personal hardship but physical ailments to accomplish important things.  Abraham Lincoln struggled with depression, Helen Keller was blind and deaf, and John F. Kennedy had such severe back pain that he had meetings with close advisors while soaking in his bathtub! 

We were so proud of the hard work he put into this project!

A little over a week ago Christopher participated in history day at his school.  He spent about three weeks researching John F. Kennedy in preparation for the speech and project he created.  It’s embarrassing to admit, but all I knew about JFK before this project was that he was Catholic and was assassinated.  It was eye opening to learn more about his journey, especially his illnesses and personal tragedies.  Christopher and I discovered together that this historical figure was very sick as a child, dealt with severe chronic back pain, was diagnosed with Addison’s disease, and had two siblings die as young adults.  Kennedy refused to let these challenges prevent him from accomplishing his goals, and Christopher seemed to connect this more to his own life this time.  Again I was inspired and hopeful.

One of the many notes he took for his project.

            John F. Kennedy said, “We choose to go to the moon… and do the other things, not because they are easy, but because they are hard.”  When Christopher was in my belly, I often prayed that he would be a “fighter.”  That this child I had would know the importance of not giving up, no matter what.  LCHADD can make certain tasks feel harder at times, but this doesn’t have to be the end of Christopher’s story.  The longer I live, the more I believe that the power to change things for the good is born out of struggle.   My hope is that Christopher will use his struggles to create beautiful and powerful changes in this world.

*In loving memory of Grandma O, who adored JFK and my sister, Veronica, who taught me about courage and pain.

Life is Filled With Seasons!

               As I sit in front of my screen trying to process the last month and half, I keep coming back to a conversation that I had with Dr. McGuire at NIH, awhile back.  He said something like, “A person’s metabolism is always changing…and this will affect Christopher.  What he might be able to do one year he might not be able to do the next, and he/you will have to be okay with that.  He might be able to handle baseball just fine this year, but perhaps can’t do it in first grade…but does fine with it in third.” I appreciated this word of wisdom, and tucked it away in a suitcase in my brain labeled, “Things to remember”, to be taken out at a more appropriate date.

Beating mom at Rummi!

            The appropriate time was February, but it hit like a ton of bricks.  January 2, 2017 Christopher came back from our Christmas trip to Maryland and Pennsylvania and was really exhausted.  He was suppose to return to school that week, but his body was just feeling too tired so we rested.  By the end of the week he had come down with a cold.  This cold metamorphosed into pink eye, and then 4 days later into a sinus infection, which led to antibiotics.  Christopher tends to get secondary infections with colds, but this time his body was so much more tired. Then one evening after being on antibiotic for about a week, he woke up at 4am complaining that his whole body felt weak and it was hard to sit up. 

            I gave him Lipistart and honey, then watched him as he fell back asleep.  Was he breathing okay?  Had this turned into pneumonia?  Was his heart okay?  Could he have developed cardiomyoapthy?  This new word, “weak,” scared me.  It was something that I have read other LCHADDers describe.  It was something other parents talked about at support conferences, but until then Christopher had never verbalized this feeling.  I was scared.  What if I missed something?

            That day led to a plethora of observation, phone calls, questions and blood work.  Christopher’s cks came back normal, the doctor said his heart sounded fine, and yet here we were.  Christopher wasn’t feeling well, and was not his normal vibrant self.  He went through several days where I had to assist him to his bedroom or the bathroom because he felt too weak to do it himself.  Our metabolic team, and another metabolic doctor in PA both confirmed that he was still within normal range for an “LCHADD” recovery after illness.  This provided some comfort, but Christopher had missed over 20 days of school since Christmas…it was the longest he missed consecutively since he started school.  So it didn’t feel like his normal.  His pediatrician agreed with me but what could we do other than wait?

            That is what we did; wait.  For about six weeks we took it easy did low key activities and homeschooled.  As much as we could, we did half days at school.  I knew we were headed into unchartered territory with our experience of LCHADD, so I reached out to friends.  I took comfort in older LCHADD parents who shared their wisdom and experience.

When he went back for half days he had fun staying inside with a couple of buddies for low-key recess!

            Then one day he went a full day of school.  Then the next day he felt like he could play catch with a baseball.  Then his best friend came over and they ran around the house and he didn’t crash the next day.  Why?  Why did recovery take so long this time?!  I think the hardest part is that there is no way to know.  It would be nice if LCHADD was like a mathematical equation where 2+2 always equals 4.  The fact is that with a cold: Proper hydration + Proper nutrition = most often recovery…but not always, and not always as quickly as one might predict.  LCHADD just gives way to a certain level of unpredictability that, eight years in, I still struggle to wrap my mind around.

A moment I remembered how blessed I am.

            But guess what?!  Amidst all the uncertainty and the length of time of this last recovery; Christopher is doing well now!  And I am reminded that life is filled with seasons.  A sick season may prove hard and at times scary, but I hope I will always remember the beauty that is born from this season too!  First, there are the extra long story times we have, with books I never knew existed, or new board games to learn to play!  Then there are moments of puzzle fun, legos, and this January many episodes of "The Andy Griffth Show."   Scholastically, I have a better understanding as to what they are learning at school.  He gets one-on-one “mommy tutorial” (for better or worse) and is challenged to know about subjects they might not cover as a second grader (this last episode he did a research project on dynamite and we studied the body/circulation).  And so as hard as these periods of illness may be, I know and trust that these moments we have together will produce something special in him.