Thursday, September 18, 2014

Happy Birthday

It is impossible to choose a few pictures that capture the essence of a life.  There are newborn pictures where we naively have no clue what might be "wrong" with our "Pale Peanut" but we know enough to treat her gingerly after an xray at 6 weeks showed she had brittle bones.  It was an entire year before a definitive diagnosis was given, Mucolipidosis II also known as I-Cell disease.  This picture was taken in your second year.  Great Gramma had not had her heart valve surgery yet.  You  had been on oxygen since you were 8 months old,  had surgery to repair a diaphragmatic hernia at 9 months, and had a g-tube for supplemental feeding put in at the same time as the hernia repair.  This picture is blurry, but I think it's appropriate since most of the pictures this week look blurry through my teary eyes.  You changed our lives forever 5 years ago.  Your three years, eight months and one day were packed full thanks to your wild and crazy parents and the incredible strength of your mom.  You kept us distracted during your grandfather's and uncle's overlapping military deployments.  You met the head of the Joint Chiefs of Staff now Retired Admiral Mullins and his wife.  You met Brobee and Muno from Yo Gabba Gabba as well as Geoffrey Giraffe.  You went to the top of Mount Washington, put your feet in the Atlantic Ocean in Kittery, Maine (you didn't really like that), went to parades, traveled back and forth to Pennsylvania to visit family and feed ducks. You loved the zoo and butterfly places and Davis Farmland.  Your dad and mom would bring tiny hatchling turtles for you to watch.  While you weren't able to go many places that last year or so, people were brought to you.  Teachers, therapists, nurses!  You giggled and entertained and learned and we were in awe of how well you could communicate without being able to use words.  You expressed so much with your faces and your fingers, your whole body.  I was so grateful when we finally got long tubing for your oxygen so you could travel around the house!  It was fun to bring you down cellar to do laundry.  You would ride in the basket on top of the clean clothes.  I remember a few months before you left you were so agitated when I brought the clothes up.  You kept leaning and making your little "demanding" noise.  (Leaning was one of your clearest forms of communication)  Somehow we realized you wanted your mom's sweater which was on top of the clean clothes stack.  You not only wanted it, you wouldn't rest until we put it on you!!!  Then you smiled and snuggled against your mom.  You held up your hand, covered by the long sleeve and smiled.  You wanted to be just like mom, like any other little girl.   You would be turning 5 today.  You rocked our world and we will never be the same.