Happy 9-month birthday baby girl!

Dearest Hannah,

What an amazing milestone we have achieved.  Today, you are 9 months old. 

I took advantage of cuddling with you yesterday afternoon.  No one was home but you and me.  We just lied on the couch, you cuddled up against my side.  You played with my hand, my necklace, and my arm.  You just stared into my eyes at times, and I could feel the love and bond between us.   It is like nothing else in the world exists – no medical issues, no chaos…it is just you and me, together.  No video, no picture, nothing can really capture these precious moments between us.  Just you and me.  Then, you started drifting off to sleep, caressing my arm so softly as you were dozing off.  Then, right before you fall asleep, you give me the sweetest little grin.  I melt.

You have me not only wrapped around your finger, but you have my heart entangled with yours.   I love watching you sleep.  You look so peaceful.  Even moreso, I love it when you wake up and see me for the first time.  Wow!  Such a huge grin.  It is almost as if I feel like I’m exactly what you wanted to see when you finally do see me. 

We are still fighting for you, my little girl.  Rest assured I am leaving no stone unturned in my quest to do whatever I can to save your life.  I am determined to make you “different,”  not a victim of this disease, but the child who will survive this disease and live a happy life.   A child pioneer who will help lead other children affected with this horrific disease to also be able to live happily and share their love with their families.  

Your health is doing much better than we were told to expect at this point.  Most people don’t even notice that you are sick with this crappy disease when they meet you.  To everyone else, you just a very happy and smiling baby girl.  I am not naive to know that the disease has already started affecting you to some extent.  We do have some delays to work on, but at this point, they are just “the way it is” and you are learning at your own pace.  I love the freedom your body is still allowing you to have at this age and that this disease has not progressed enough to start slowing you down.  You are so much more of a fighter than I ever have been!

Though I pretend to be jealous, I just love how your brother and sister can make you laugh more often and harder than I ever could.   Seriously, you just see one of them smile at you, and you get so excited that I can feel your body jump up and down!  They are obviously your favorite toy because you can’t seem to get enough of their attention.  Fortunately, they love giving you every bit of that attention as well.

You have so fully integrated in our lives now that I just don’t even want to think about our lives without you.  You have already make a permanent mark in our hearts, moreso than I thought was possible in just 9 months.  9 months, and my life has completely changed.  Wow…

I promise to keep fighting for you, and you have to promise to keep fighting for you too.  I will talk to every specialist, every researcher, and every person even associated with this type of disease if that is what it takes to find the pieces of the puzzle that, when finally put together, will give us some peace in our lives knowing that the threat of losing you will be gone. 

That is my wish… Just to be able to live with you, your brother, your sister, and your daddy without worrying that you will be taken away from us so soon. 

I love you, my dearest little Hannah. 

Mommy