Truth, honesty and love

Around July 2013 we had our third appointment with Kluge and it was extremely different than the first two appointments.  In our first appointment in March, the doctor explained that Olivia would eventually be fine.  With therapy she would walk, she would run and only a doctor would be able to tell that her walk was different than others.  From this appointment, I basically envisioned that Olivia's CP would simply "go away".  That she would be perfectly fine around the age of 5, after a few years of therapy.  I was worried about the CP, but I felt okay about her diagnosis, unfortunately, I was not prepared for the truth that I would soon discover.

Photo by Amy Camblos

For the July appointment I had requested for Olivia to be moved to a doctor that specializes in cerebral palsy.  When we met the new doctor, we were also met with a VERY different diagnosis of Olivia's CP.  The doctor explained that Olivia has extensive damage to her brain and then proceeded to show us her MRI as it was not available in the previous appointment.  What we saw and heard in that appointment was devastating.  The amount of black seemed to cover the entire left side of her brain, though the doctor assured me that it was just the angle that made it seem that way.  When I recall the first and only time I saw the MRI all I can remember is how quickly my heart sank.  I wanted to scream at the doctor at top of my lungs, "this is not what we were told in beginning!  This is not our story!  This is not Olivia's outcome!"  But instead, the news hit me like a ton of bricks and the pain hurt my heart and weighed on my mind.

Soon after this appointment I was with a friend who asked of Olivia and how she was doing.  The raw emotions stung my insides as I explained that it is not exactly what we had thought, that it may be more serious than we had imagined.  Her CP would not go away at age 5, she would carry it with her forever, fighting to use her right hand through extensive therapy.  My friend could tell that I was clearly upset and knows it is rare that I share my emotions openly about anything.  She suggested that I write down how I feel to help me cope with this journey.  She suggested that maybe writing down my thoughts would help me wrap my head around everything that is going on and that way one day I can look back on how far we all have come.  I told her that I had considered starting a blog but I wasn't sure if I should share this journey with the world.  For some reason cerebral palsy seemed too personal. 

It was a difficult decision to decide whether or not to reveal our story, Olivia's story, our journey and if I should share the ups and downs, and the highs and also the lows with family, friends and strangers.  I was afraid for the world to know that a stroke caused damage to Olivia's brain, leaving her right side with a developmental delay.  I was afraid to let the world know that Olivia was different than her peers.  It seemed like a secret I had to keep from everyone because maybe if no one knew about Olivia's cerebral palsy, than maybe it would not be true.  Obviously, I changed my mind somewhere along the way.  And upon further reflection, I realized that maybe a blog was exactly what I needed, a way to express my feelings and my thoughts and share Olivia's story with those that wanted to read it.  And recently, a friend was kind enough to write me to comment on my blog, my honesty and my writing and how it helps put into perspective the weight of cerebral palsy on Olivia and on my husband and on me.  I quickly responded with a thank you and that it was an extremely difficult decision to share this information with the world.  

But why is it that we are afraid to share the hard things in life with one another?  There are so many hardships that people face... Developmental disabilities, depression, postpartum depression, infertility, anorexia, bulimia, divorce, abuse, alcoholism.. to name a few.  And for some reason confessing the truth to others is sometimes harder than baring the actual problem alone.  Why is this?  Somehow the world has become this place where only the perfect side of life can be represented and portrayed.  But in reality, life is hard.  People do more than they did in the 1950's, from longer work hours for BOTH parents to even more after school activities for kids (among a million other changes), the world is different and along with these changes are the stresses of the world weighing on us all.  Yet we still decide to keep it to ourselves.  

Of course, I am not saying that everyone should start a blog, or write an article in a newspaper, or even shout it from the rooftops.  But I am suggesting that we stop feeling as though we have to keep a secret from the world because if we share it, everyone will know our life is not "perfect".  There is bravery in sharing your story, should you feel it is the right choice for you, because while it is difficult it may help someone else and even more importantly, it may help you to heal.  So for now, I am going to keep telling Olivia's story the best way I know how, with truth, honesty and love.  And maybe along the way someone else will find her story helpful, but if not, I know that through my words I can heal my broken heart and in doing so, find the strength I need to be a Mom that Olivia deserves.

Here are some extremely brave people and their stories:

Postpartum Depression

Cerebral Palsy

Infertility and Adoption