He and I are here. It's January 4, 2013. A disney movie plays on a portable xbox station. Balloons are all starting to deflate. The sounds of beeps and buzzers are now background noise, and when the doctors and nurses come in, its like seeing old friends.
He is in his bed, and his tummy is hurting but his smile lights up the room. It was not too long ago from this moment that I really missed Daniel's smile. A pink pitcher with ice water, the daily platter of fruit, donuts, and muffins. Fairly bad coffee that has become quite good. Two small suitcases that rotate clothes back and forth to home. A bathroom that looks fully equipped with our stuff. Piles of bills to pay, cards to write, books to read, and magazines. The same ugly view out the window. The same scratchy white towels. Friendly faces, and helpers when needed. Every single person says "can I get you anything Mom?" Because in the Children's hospital they don't bother to learn your name, you are either Mom or Dad or sister or brother. Phones ring in nurses pockets and they answer "7-2" then rush away to where ever they are needed. 6:00am the orthopedic docs come in, and turn on the brightest of lights, smelling of strong cologne which contradicts their maroon scrubs, they check Daniel's incision and leave, usually forgetting to turn off the lights. And the yellow protective gowns and gloves. Being a "contact precaution" room is hard because everyone who comes in here has to cover up. Daniel tests positive for MRSA....and therefore he can not leave his room at all. Respiratory comes in to do breathing treatments twice a day. Always a different person.
One day a nice friend had a bag full of goodies delivered to me from the gift shop downstairs. Magazines, cookies, slippers, a teddy bear...etc. And then I pull out the People Magazine. And I am home again. Home to the sadness because on the cover of People are the faces of those angels we lost on December 14.
I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
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