Fear of the unknown

I have mentioned before in a previous post the difficulty I had deciding whether or not I should write a blog about Olivia's journey.  But I am not sure I have really emphasized how great of an experience it has been to write down my thoughts as we chug along this CP train.  Every time I write a post I read and re-read it over and over again, soaking in the words as I capture a single moment on a timeline that will extend the length of Olivia's life.  Every time someone comments, I re-read my post to see if I can understand where that person is coming from and if I agree with their perspective.  I re-read  my posts to make sure I have accurately stated my thoughts and my emotions.  More importantly, I re-read my posts to ensure that I have captured Olivia's world and how our worlds now move together, like the tides of an ocean, albeit, sometimes rough and furious like the waves, and other times gentle like the calm after the storm.  I re-read it to believe it, to accept it and to move on to the next challenge.

I recently realized the greatest thing that I have been able to do is tell Olivia's story, but typically, I am telling a story that took place at some point in the past.  Since we found out at the end of March 2013 and I did not start blogging until August 2013, there were a large number of events that took place during that time frame.  The distance gave me the ability to digest the information.  Time has only helped to empower me in many ways from seeing how Olivia grows and learns each day and how she works to overcome more than her fair share of obstacles.  Time has given me the ability to process the information, mourn the information, deal with the information, and move on through a new post.

Almost a year ago exactly, Olivia was diagnosed with cerebral palsy and I thought I had processed the information in one tiny week.  That week was not enough time to process the word cerebral palsy, let alone that my child had damage to her brain.  Needless to say I ended up with a teary night while out with my friends for a bachelorette party one Saturday night.  In the middle of my break down, a friend from high school came over to see if I was okay, and with him was a friend I did not know.  After explaining the cause for my late night crying, she told me her sister had cerebral palsy and that she goes to college, she plays sports, she does a lot of great things.  She told me that our meeting that night was meant to be because she was the perfect person to talk to about this type of situation.  I then asked her how her sister walked/ran and if it was with a limp?  If she was okay, if she was happy?  She replied that she has all of those things, including the limp and that it is noticeable, but she has a lot of other great things that she focuses on.  It didn't help.  Nothing she said helped because I needed time to process the news.  I needed time and I hadn't allowed myself anything other than a brave face and a smile.

Looking back, I cannot believe I didn't explode sooner.  I was a ticking time bomb of emotions and I probably should have stayed home that night.  This past weekend was my same friend's baby shower.  And as I looked around the room at the girls that stood with me as I cried, I thought about how many milestones Olivia had achieved since that tearful night.  How far she has come and how much she has accomplished.  Knowing what I know now does not make the diagnosis any easier, but it does make me less afraid of the future.  And that emotion, the fear of the unknown, is what draws the tears to the edges of my eyes, as it did on that night one year ago.

We recently had a physical therapist come evaluate Olivia (we have been working with an occupational therapist since March 2013).  After working with Olivia she tells us that Olivia needs a brace because she is hyper-extending her knee when she walks.  And I feel it seep back into my body.  The fear, the worry, the unknown.  I quickly made an appointment with ortho at Kluge and she was fitted for a cast that same day.  In three weeks she will have a "walking boot" of sorts and the hope is that this will help move her into unassisted walking.  With the exception of one doctor, through this whole journey, no one ever told me certain ages that Olivia will likely complete a milestone.  Mike and I just were happy when milestones were achieved.  There wasn't any pressure.  But a year ago, the doctor in ortho said he would be "willing to bet" that Olivia would walk by 18 months.  Guess what?  She is 19 months old, and she is not walking.

Seeing the girls at the baby shower this weekend reminded me of this uncertain time in my life where I was scared, angry and worried for my beautiful little girl.  These same feelings rushed through me the moment the PT told me Olivia needed a brace for her right foot.  Forever?  For how long?  What will it do, what will happen WHAT WHEN WHERE AH!?  There are no answers, ever, until something new happens with Olivia developmentally.  Then I remembered how much has happened in a year and how strong and determined our daughter is, and she is certainly determined to walk.  I don't know when it will be and I don't know if this brace will make that happen sooner rather than later.  But what I do know is that she will get there.  So while this new information does sting, this is a moment in Olivia's journey that we will look back and say remember when....?  So for now I will work on my fear of the unknown and the future, and instead focus on the present and helping my daughter learn how to walk with her new brace.