Chloe - three years later. Special day - October 8, 2012

Sisters laughing on Chloe's special day - October 8, 2012

Today we celebrate Chloe and her fight over the past three years.  She is a big girl these days and yet still such a baby.  She has overcome so much but still has so many obstacles to tackle.  She has shown such enormous strength, yet her body is still so weak.  Her spirit and her fight, though, have always shined through. 

It is still so difficult to recount the events of what happened when Chloe first got sick or what we have gone through over this time.  There are still moments of anger, resentment, frustration, confusion, and defeat.  Many of these moments are still filled with pain and sadness.  It is still painful to look at pictures of Chloe before she got sick and remember those moments.  Your heart just aches and it becomes too much to bear still.  We still ask the same question over and over… ‘Why?’ There is never an answer. 

Olivia has been asking about her sister more these past few months.  She asks about what happened and tries to make more sense of what it means when your brain is hurt.  She asks for more explicit details on what it meant for Chloe when she got sick.  Ultimately, though, she asks when Chloe is coming home or she simply and very quietly says, “I miss my sister.”  An unbearable pain in my heart always seems to swell when I hear her ask for Chloe and all I can do is take a deep breath and say that I miss her too.  Olivia is lost without her best friend.  Any time she has the opportunity to make a wish as she blows out a candle, throws a penny into a fountain, or looks up at the first star in the sky, she will always wish for her sister to come home or for her family to be and live together forever.  It is so sweet and innocent when she does this and makes me appreciate their bond so much more. 

We miss Chloe everyday.  The pain we felt three years ago has never gone away but we try we move forward each day a little bit more.  We look forward to seeing Chloe grow and face new challenges everyday.  There still has not been much progress in terms of her development of physical strength but she has shown us time and time again how much strength is still alive inside her.  Her affect has calmed a bit over the past few months and she does not cry out as often.  She is still heavily medicated for her seizure disorder but we see fewer clusters.  And, best of all, when we visit her and hold her close she will laugh and smile.  It does not happen each time but when it does, it fills our hearts with such joy.  She knows she is loved, always has and always will be.  She knows when she is surrounded by those who love and support her every step of her hard journey.  She has not forgotten who we are nor will we ever let her.  She is truly amazing!

These past 6 or 7 months have been a huge adjustment for our family.  We juggle so much every week and weekend to make sure we create a home life both here and at Sunshine.  One thing I’ve learned from Chloe, though, is that you can never give up.  She has fought her way through life and continues to do so everyday and I must follow her example.  As hard as it is, Reth and I make it work so that we we try everyday to enjoy our marriage, enjoy our children, and enjoy our dreams.  It is not easy, it never has been – there are always tears, there are always arguments, there are always hardships that we endure.  Chloe has taught us so much about love, patience and strength.  She inspires us everyday to do more, to be better, to be more loving, and to be more kind.  I miss having her next to me everyday, I miss seeing Olivia run to her sister after school to shower her with kisses, I miss watching Reth dancing with his baby girl before bedtime and I know I will be crying for her the day her baby brother comes. 

She is an amazing girl who is very much loved in every possible way and for that we celebrate her today and always.  Thank you Chloe for all that you have given daddy, Olivia and me.  You are an incredible daughter and are such a gift to daddy and me.  Olivia adores you and will protect you always.  You will always be her best friend.  And, we can’t wait for you to be a big sister.  You will teach your brother how to be sweet yet strong, stubborn yet loving and all from being just the way you are. 

We love you Chloe!  Even though you are sometimes so far away, you are always in our hearts.