Finding Hills

I’m back!.......Sort of.

Welcome to my new blog.  I don’t have a super catchy name yet.  Odds are I might never have a catchy name.  I’m not all that clever.  But, here we are. 

A quick recap:  Years ago, I was a stay at home mom and an aspiring writer.  I loved staying home and raising my babies, and I truly believed in the work I was doing.  And then came Eli.  From day one, he was different.  Fragile.  At 4 lbs 7 oz, he spent his first weeks in the NICU.   When he came home, he required constant care.  At four months, we noticed motor anomalies that led to his first diagnosis of cerebral palsy.  He began therapy at 5 months old.  Suddenly, my work didn’t seem so important, and I lost my words.   My whole existence became about recovering Eli.  At 2, he was diagnosed with autism.  At 3, epilepsy.  And 4 came Celiac disease  (During this time, my other son, Jonah, was also diagnosed with high functioning autism).  At 5, my kids’ dad left, leaving us with nothing.  I never had time to regroup back then.  Every time it felt like we were slowly rising to our feet, it seemed life was determined to kick us down again. 

In my attempt to find myself and to provide for my family, I went back to nursing school when my kids were 10, 8, and 6, with the support of my now fiancé, Phillip.  The entire time I was in school, Eli’s health was declining.  Finally, in the summer of 2012, when Eli was 8, our new physiatrist dropped a bomb.  Eli had been misdiagnosed his entire life.  He felt that E had mitochondrial disease and sent us for genetic testing.  In the fall of 2012, E’s health bottomed out.  He missed 60 days of school before he was homebound.  I gave up on nursing school and am now convinced that God’s only reason for sending me back to school was so that I would understand what was happening to my son.  On January 7, 2013, we received the results of E’s genetic tests.  He was finally diagnosed with Mitochondrial Myopathy.  Mito is rare genetic condition in which the mitochondria (the “powerhouses” of the cell) don’t function properly and cannot produce enough energy to sustain life.  E began treatment, which consisted of high dose vitamins (the only current available treatment for mito) and carnitine, which his body is deficient in.  The oral carnitine made him deathly ill.  I remember him lying on the floor of my bathroom in between bouts of vomiting and asking me, “Mama, am I going to die?”  And I didn’t have an answer.  I still don’t. 

In August of 2013, Phillip, the kids, and I moved an hour away from home to Phillip’s hometown, which is closer to New Orleans and therefore closer to doctors and treatments.  Blue Cross stopped paying for his medicine, so we had to travel across Lake Pontchartrain into the city every Friday for 6 months for E to get an infusion of n-acetylcysteine (NAC), carnitine, and fluids.   And finally, finally, finally, he started to recover.  The NAC was kind of a miracle, but it wasn’t perfect.  (NAC is used in Tylenol toxicity to repair damaged liver cells, so in Eli, it helps his weak cells keep on puttering along).  The effect is short lived.  He would receive his infusions on Friday, have great energy and color for 5 days, and then fall off the energy cliff on Wednesdays until we could go back for more.  Unfortunately, the FDA has not approved NAC for long term use, and in May of last year, BCBS pulled the plug on his treatment.  So, we began tri-weekly (out of pocket, thanks Blue Cross!) injections of NAC and methylcobalamin, a B12 derivative.  The injections were extremely painful for him, and the result was not worth it.  We stopped the injections. ( I can also thank nursing school for teaching me to give injections.  So, there’s that).

This year, Eli stopped going to school.  Being that he has enough time to rest and is not getting sick nearly as often, his health has been much better.  He still goes in for infusions (just fluids) when he needs a boost or during/after an illness.  But, for the most part, I think we are living in a status quo at the moment.  Which is a very strange place to be in as we really have never had a status quo.  It’s taken some time for me to exhale and to stop waiting for the other shoe to drop, but I think I have finally learned to breathe. 

So that brings me to now.  For years after E came along, the only words I had to share were about our autism/mito journey.  I kept a blog for several years that chronicled our life.  After E was diagnosed with mito, I shut it down for the most part, with the very occasional post here and there, as I felt I needed time to learn to live the “mito lifestyle” and to come to grips with my son’s illness.  I had to “turtle” for a while.  I went  inside my shell to protect myself and my family from as much raining hellfire as possible.

What I came away with from my turtle-thon is that I need something more in my life.  I.  Me.  Not just my children.  I need to be a person independent of my children.  I imagine that sounds incredibly selfish.  A mother is supposed to be selfless.  I am not giving up on my little guy nor could I ever.  But, I need to be more.  I need to find me.  To find my words again.  To find what makes me happy, too.  There may come a day when our sweet Eli is no longer with us, and if I am only ever his caregiver, when/if he is gone, who will I be?  How will I go on?  How will I be a mother to my other children?  The answer is not that I let go of him, but that I also don’t let go of me.  Instead of defining myself as one thing alone, I must reach further and learn to be more, not less.  So, here I am. 

I am finding my words again.  I’m writing a story again.  Fiction.  But, I believe I also need to write reality as well.  Our reality.  My reality.  It’s all intertwined and yet separate.  This is my attempt to make sense of the nonsensical, to find meaning in the meaningless and hope in the hopeless.  If I cannot find a light in the dark, then I will be the light in the dark.  Because as much as I have sometimes wished for time to stop, for life to give, I have finally learned that I have absolutely no control over those things.  I can only control how time is spent and how I react to the punches life throws. 

Sometimes, I want to curl up in a ball and cry, but I know that if I do, the tears may never stop.  I may never get up again.  On the rare occasion when my mind wanders to that dark place where I wonder what the future holds, I cannot fathom even being able to breathe without my amazing Eli.  And so I stay in the here and now.  I document all of the silly things he says and does. I recognize a moment when I need to take a snapshot with my heart.  Hold on to this, Hills.  Don’t forget this.  Don’t let it go.  And somehow I know I am lucky because I know to do that.  I know to not take it for granted.  The clock is ticking for all of us, but I can hear it.  And somehow I think that makes me more grateful than I would have been otherwise. 

Life has taken so many twists and turns that I have lost sight of who I am many times.  So, I can’t just ask myself, “Who am I?” but “Who am I, now?”    I am not someone who is defined by my job or my station in life.  God knows that’s laughable.  So, who am I now?  I’m a daydreamer.  I’m passionate.  I’m opinionated.  I’m gullible and dingy at times. I'm stubborn. I am broken, and I am lost.  I have no map, but I’m on the journey of a lifetime.  And I refuse to turn around.  (See:  stubborn).

I am not going to write about E’s illness every day, though I’m sure I will from time to time.  I just don’t want it to be the center focus of our life.  So, here I will write about whatever I feel like writing about whenever I feel like writing about it.  I'm not quite sure where this is going, but that's nothing new for me.  I'm only fairly certain that I’ll probably curse a lot.  Cursing makes me feel fucking fabulous. 

But, in this place, in these words, I hope to find the woman that I want to be.  Here I hope to find my inner Wonder Woman.  Please bear with me as I stumble along.  I can't promise much.  It might not even be all that entertaining to you.  But, then, that's not really the point, honestly.  In these words, I will find me.  I'm more Greatest American Hero than Wonder Woman, but that's okay.  I'm still flying either way.