A Year To Celebrate

Happy Birthday Gabrielle,

Thank you my wise, sweet girl for everything you've taught me.  When you were born and we found out about your diagnosis I didn't know how I could possibly do it.  I desperately prayed to the universe that you would be healthy.  That you would live a life as I knew it.  With your diagnosis, we collapsed and our world fell apart, but with your smiles, your touches and your energy, we have been building ourselves back up and now we stand tall.

You have taught us so much.

You have made your daddy the best daddy ever.  Never have I seen a man rise to the challenge with so much love and positivity.  He faces every challenge, every set back with nothing but courage like a soldier in battle.  He is with you in every step you take.  He sings and dances with you and when he does he fills you up with all the love he has. Enough to last you an eternity.

You have taught us so much.

You have made your brothers the best brothers a little girl could ask for.  Never do they get jealous of all the attention you get.  Instead, they stand proud, they show off for you, and ask to cuddle and hold you relentlessly.

You have taught us so much about our bodies. Your brother James has learned that some babies have nurses and doctors to help them and some don't.  Before you Gabrielle, we naively assumed that all bodies are healthy.  But they are not.  We have learned all about lysosomal storage diseases and you make us sound so smart with all our fancy new medical language and knowledge.  I know how to give meds through an NG tube, I know how to heparin lock your central lines, change the caps, and the bandage while maintaining a sterile field. I can work a feeding pump, oximeter and probe, and I know what a suction machine feels like in my nose, and I have tasted a gazillion medications.  You have opened our world to the world of cellular biology as we try to understand what is going on in your little body.  I have learned to advocate for you and have become a mini expert on your diagnosis.  You, my smart and wise little girl, have stumped the smartest of doctors with your medical needs and symptoms. But I have learned. I know exactly what you need.

You have taught us so much.

Thank you for showing us a world full of amazing people that I otherwise would have never met.  They get the heartache, the pain, the joy and the love.  They get the strength of the human spirit and they understand the miracle of a healthy child.

You my sweet baby girl have made me wiser.  You have made me stronger. You have made me more appreciative.  You have taught me that we don't need much and that love can get us through the toughest of times.  When I look at you with your tubes and tape on your face, I see the most beautiful girl in the world.  I see a little girl with wisdom in her eyes and love in her heart.  I love you Gabrielle.

Happy 1st birthday to the bravest and most beautiful girl I know.

Your mommy for ever, and ever, and ever,

Amy