So what have I been doing these long winter's evenings? Other than banging my head off the keyboard in frustration? Hmmm, lessee. There was Turkey Day and Christmas tree trimming (not in that order) Christmas in Brigadoon. New Year's Eve consisting of being happily boring at home. Second Christmas at the in-laws. (We're like Hobbits that way.) One more surgery scheduled for Feisty Pants- wisdom teeth. One more test she will have to be sedated for. (Hip scan to check her hardware from the last surgery.) Almost weekly out of town trips to various specialists. Is this Tuesday? It must be Philadelphia. Friday? Oh, yeah, Rochester.
But, mostly I wanna talk about two AHMAZING things that have happened. Last fall, Feisty Pants' pulmonologist pulled her cpap machine declaring she did not have sleep apnea and did not need it. Simply put her back on nasal cannula and o2 at night. FP has been on oxygen at night since she was born. I was told she will never come off. She did so well without the cpap, they tried to pull the o2. It worked. She is no longer on oxygen unless she is sick or having an asthma attack. And today is her sixteenth birthday.
When Feisty Pants was born, she spent six weeks in our local NICU. One of the last things the neonatalogist said to me was, "You need to know you are probably taking her home to die." So far, she has not bothered to do so. Today she turned SIXTEEN. Sixteen years of work and worry and hospital stays and specialists and meetings and medications. Sixteen years of roller coaster highs and lows. Of the hubby and I holding each other back so we didn't punch doctors who forgot how to be people. Or reminding each other not to hug strangers who made a huge difference without realizing it. Of yelling and typing and yelling some more at bureaucrats and insurance people and politicians. School teachers who made us howl at the moon. School teachers who made us shout with joy. Of high fiving FP for swearing. Of early Christmas trees so we never miss them. Dinners at 3pm or midnight. Easter and Thanksgivings at Chinese restaurants. Some days this journey can be really hard. Needle sticks and medication regimens and sleeping and working in shifts to care for a disabled kid can be tough. Today is NOT one those days. Today my baby who was supposed to not make it got a bracelet from her boyfriend that says" Warrior". It was a sweet gift. But we already knew.
Happy Sixteenth Birthday, Feisty Pants.
