eatthefrostingfirst

It's November. I don't need to be reminded of National Prematurity Month because to me, everyday is a reminder of prematurity. For so many of you, your times of prematurity ended the day your baby came home from the NICU. You remember those days like they were yesterday. They might as well have been because the smell of purell, the beeping of the monitors, the swing of a rocking chair; it all brings you right back. It was the club we didn't want to join but we all instantly became professionals. We knew terms like ROP, IVH,SATS, and NEC. We couldn't wait to kangaroo care with our infants because that was the only time we actually got to touch and stare at them without a plastic isolette coming between us. The nurses- you nurses- you all became our friends. Our confidantes.  Our lifelines. I called you every few hours (the hours that it was not possible to be standing vigil beside the isolette). I called to check on his oxygen, his blood gases, his weight. You never...

Next month I will be dropping off my youngest to overnight camp. Not just any overnight camp but MY overnight camp. In 1977, at the age of 9 (I just turned 46 if you're trying to do the math), unbeknownst to me, I was dropped off at Camp Tel Noar and embarked on one of the most memorable and life changing chapters of my life. Really? Life changing? A bit of an exaggeration? Not at all. I was 9 and was on my own, so to speak. I was allowed to be independent. I was encouraged to be independent. I was able to be true to who I was. I became confident, more social and made the most wonderful friends. This didn't all happen in one summer of course but it did evolve over time. After 8 weeks, I begged to go back and so I did. For 12 years. What I didnt know at the ripe age of 9 was that I was about to learn all kinds of things that would help me later on in life. I was going to learn to live with a mix of personalities; some unlike myself, and would have to cope and work together. I...

Feeling shitty- not sick; but gross. Ladies, you get me. Just one of those days. Looking in the mirror I'm seeing circles under my eyes (could it be the fact that I woke up every hour last night? Saw the clock read 1130-1230-130-ok, you're following along) Have a headache (hmm, lack of sleep, headache?) Youngest giving me a run for my money (seeing a pattern?) Feeling fat (nothing new)... and need to run to Bloomingdales to pick up a gift card. Throw on my sweats and know full well I'm going to regret it. After all-I'm going to Bloomingdales not my local mall. The minute I pull up and get out of the car I know I'm in trouble. Jeans with high boots are following behind me, to the side of me and yes, in front of me. And of course, all size 0. It's okay. I'm only here for a gift card and surely I wont run into.... okay, person I know from a while ago who clearly doesn't know me (or maybe she does and doesn't want to say hi either) Get th...

This is a good glimpse of what my life is like living with my eight year old.

I'm feeling sentimental today. You see, when you were a baby and living with a tracheostomy and depending on the ventilator to help you breathe, I joined an online support group. It was a group of Mom's mostly (some Dad's) who had children with trachs. They were essential at the time to my daily life. I asked them questions, I felt less alone; a huge sense of community. There I met a woman named Anne who had a son with a form of muscular dystrophy. He was far more sick than you and a few years older.  Anne had been on the boards a while by the time I joined and answered questions to all the "newbies". Giving them advice, support, an ear... I just found out that Anne's son passed away at the age of 13.  And my heart was sad. Sad because no parent should have to bury a child. Sad because although I cant compare the 13 years to the one day that I knew Zachary but, I also, buried a child. I know that hurt. Sad because her life, for so long, was filled with medi...