Hi All,I have been proscrastinating writing Chloe's two year blog because I am at a loss as to what to say. It seems like everytime we update the blog we are writing the same thing over and over... Truth is, there has not been much improvement with Chloe. Yes, she has come a long way since the very beginning but in the last 6 months to a year we have not seen much positive change. In truth, we have suffered through many lows and setbacks. I wish I could write to all of Chloe's followers and say exciting things like, she's gotten much stronger, she's sitting up, she's cut down on her seizure medications, she's slowly transitioning away from here PEG feedings and is now taking food by mouth, she's extending her arms to Michelle, Olivia and me wanting a hug... wanting a kiss... But that would not be true. I can tell you all this much, she is loved. Loved like no other baby can be loved. And that will never change - we can only love her more and more everyday.
For this blog update, instead of writing to you, her followers - I am writing this blog to her.
My dearest Chloe,
It has been two very long years now but yet the events leading to that one day still remain very fresh in my mind. I still remember the phone call from your mommy saying that you weren't looking well and the panic that built in me hearing your laboured breathing over the phone. Arriving home and holding your limp body in my arms devastated me. It has been two years now Chloe, and every night I stand over your crib amazed at how far you have come. You are the strongest and bravest little girl. I wish I had your strength. I push through every day knowing that everything I do now in my life is for you, Mommy and Olivia. Every night before I go to bed I stand over your crib and watch you sleep. I place my finger in your hand and await your grasp. I can stand there for hours just letting you hold my hand. Sometimes you wake up and our eyes meet. I brush the hair from your eyes and I whisper to you, "it's daddy, baby girl, I'm still here." "I will never leave you."
Chloe, I fear for what the future holds for you. Thoughts of Mommy and me getting older and being unable to care for you creep into my head. Then the panic sets in. How will we care for you when we get too old or you are too big? Will the burden of your care fall on Olivia? How can I trust those who will care for you if Mommy and I cannot be there for you everyday like we are now? I understand these thoughts are much further down the road to be concerned with now - but this is what I think of at night while I stand over you.
I am still very angry that you got sick. We struggle with our faith. Mommy and I hear people say, "everything in life happens for a reason." And, "God has a reason for letting things like this happen." What possible reason does God have for changing your life, and our family forever?? This should not be your life Chloe. It has been so difficult to accept the reality of your illness that took away so much from your life and left us so utterly heartbroken. Your life should be spent full of life's firsts. First steps, first words, first day of school, first graduation. This should be your life. You should be running and spending time with Olivia who loves you so much and who, to this day, has not given up on you. She sees the two of you in the future playing together, and growing old together like siblings do. She longs for the day when the two of you will play 'hide and seek' and share secrets like sisters do. She plans to raise her children with yours. The bond that Mommy and I see between Olivia and you is unbreakable. Olivia will love you always - that will never change. I will admit sweet girl that it makes me happy and yet sad at the same time when I see Olivia playing with your cousin, Taylor. Taylor loves you like her own sister too. You should be with them running and playing, hugging and kissing. It breaks my heart everyday that you are for the most part a passive observer in your chair watching them play. As much as they include you and dote upon you, it is sad that you can not truly be a part of it. It is clear, though, that you somehow make them feel like they are seen and heard.
We sometimes wonder how much you understand, see, or possibly even hear. Doctors and tests tell us that you are not able to process much but we hope that you know that you are loved, so loved each and every day. We do our best each day to fight our tears and our insecurities of how to care for you best. We have had to make so many difficult decisions regarding your care and we hope that we are doing right by you and the fight that you lead. We have lived through so many days already when we have felt defeated and beaten not knowing how to care for you and we struggle with how to move forward concerning your quality of life and our family life. We struggle with accepting your role as a passive observer because you had so much joy and promise in your first 8 months of life. Mommy and I will always remember you playing and laughing in your swing that last evening and morning when we thought it was just a cold. It hurts now to know that in that same place where we saw you so happy and content now sits a wheelchair to hold your head and trunk in place, a feeding pump, your hearing aid and implant, and countless medications and syringes.
Much love Chloe, Daddy loves you.
