Monday, September 13, 2010

fighting the odds

Some days I have trouble trusting God with the mortality of my baby.

I know that every parent has moments where they fear that something will happen to their child, but I don't think that every parent faces as many very realized moments as special health needs parents do when they look at their children and wonder about the longevity of their respective lives.

Some days this just strikes me harder than others.

Tonight as I was giving her a bath, I saw her snuggle down into the bubbles and enjoy that warm bath with a small smile on her normally serious face as she stared back at me with large blue eyes full of wonderment. I picked her up out of the water (after her skin was starting to look prunish), dried her off, diapered her, dressed her. I saw her chubby legs kick and her chubby arms flail as she communicated with me that she wanted her bath to last forever. As I talked to her to tell her how silly she was being, she started to laugh at me. I picked her up and snuggled her against me and breathed in the essence of a baby -Johnson Baby Lotion. She pushed her little arms against me in an attempt to hold her wobbly body upright herself. The look of sheer determination on her face reminded me of myself, which was scary. Feeling her soft skin, watching her watch me, holding on to her warm body- the scary thought flashed across my mind: What would I do if something happened to Addison?

The thought tonight hit me so hard I began to cry as I held her tighter and placed my head against her warm head, breathing with her. It's amazing how one tiny baby can sneak into every crevice of your heart and take over so completely.

Every time Addison breathes so heavily I can hear her all the way across the house, every time we get her blood work re-checked for leukemia, every time we talk about her next heart surgery, every time I hear about something happening to somebody else's tiny miracle- I ponder this very dangerous subject.

It without fail leaves me with one thought. Never take Addison for granted. Never allow one moment to go by unappreciated because we don't know how many moments we have with her. Lord willing, she will be around long enough to meet a sibling, long enough to go to school, long enough to play a musical instrument, long enough to ski, long enough to amaze the world with what she is able to do and accomplish...but we just don't know.

Some days I look at her working so hard to live and I fear for her. My heart literally starts to break at the thought of something happening to her.

I think that is one reason why I have enjoyed this blog so much. It forces me to put aside the "what ifs" of every day life and focus on what she is doing- what she is accomplishing- what cute outfit she is wearing today.

I struggled with whether or not to post this, but it has been so heavy on my heart tonight I felt like I needed to get it off my chest. Somehow I always feel better after posting. It is part of the "everything and nothing" that I face almost daily- some days more than others.

I just want to say-

I love you so much and I promise never to take your life for granted. You are already such a miracle and inspiration to us. You have survived and beat the odds so far. Please continue fighting to stay with us. I promise life gets better once you can live without being attached to that oxygen machine. I promise that better things are ahead for you. You concentrate on continuing to beat the odds and I will concentrate on being the best Mom possible to be here for you no matter what you need.
I am going to stop writing now Sweetie because you are sound asleep in the other room, wearing your little duck outfit, stretched out doing the splits with no doubt your oxygen tube pulled once again.....I want/need to go watch you sleep for a bit. I love you.


  1. So so sweet. God has His hand on your little girl, Mama, don't you worry. I know exactly how you feel, and Lily hasn't even faced some of the struggles Addison has. Maybe that's one of the mixed blessings of our babies with designer genes- we will never take LIFE for granted! I'm glad you posted this- makes me feel normal :)

  2. I have had the exact same moments. Mine are usually for no specific reason, but I will just be holding her and then it hits me....what would I do without her? I can't even stand the thought of it. Thanks for the reminder that we should never take ANY of our kids for granted...special needs or not!!

  3. Deanna, this was so beautiful because it came straight from your heart. I am in awe of your strength, I really am, I think you are an amazing Mother and your love for your daughter shines through in your posts and I am sure they touch everyone who reads them. Addison has such strength and determination and she is such a little fighter...I have never met her and I just adore her!!
    Loved this post!


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