Thursday, December 23, 2010


Its Thursday night. Christmas is Saturday. Life is not quite as holly and jolly in the Christmas spirit as I had hoped it would be. Ella went to bed last night without any of her "guys". She doesn't listen. Ever. And I'm sick of it. I know she's 2, but i'm a good parent and I'm determined to raise the girl with some respect. There are a number of behaviors we need to work on changing, but listening is by far the most out of control. She's TWO for crying out loud and shes got more willpower than anyone I know. She gets threatened. She gets time outs. There are consequences. But in the end it feels like we are always the ones who end up feeling bad and making excuses for the way she behaves. After all, shes a direct reflection of my parenting skills, right?

We watched a lot of TV today. No one here feels good. Everyone has terrible colds and no one is sleeping well. Drew's health is questionable and no one really knows why or how anything he catches is going to affect him, beside negatively of course.

I hardly got anything for the twins for Christmas. We already have so much, plus they don't really know. Santa will have something (4 items to be exact) for each of them under the tree so that Ella can see that he brought gifts for everyone, but thats about it. Martin and I didn't get each other anything either. Well, a few odds and ends - new coffee mugs, a rice cooker, some socks and the standard toothbrush in the stocking. We don't need anything, and frankly what we want doesn't even really even come into consideration anymore, what with all the other needs we have, respectively named Ella, Lily & Drew.

Gosh its been such a crazy year. In January, I remember thinking, "I'm HUGE!". I remember going all kinds of places with Ella - out to lunch with friends, the museum, the zoo, music class, story time. We were best buds, Ella and I. I could not imagine a more perfect world.

In February, I recall thinking to myself, "There is no way these babies will be in me until April. I later realized I was right.

On March 13, around 1am, I started having contractions. Martin, who had long since moved into the guest room, was notified around 5am. I wasn't really in pain or anything, but I was definitely having pretty regular contractions that weren't going away. Two days prior, after every test under the dun & no centimeters dilated, I was told that I might actually carry these babies to term. We got to the hospital just before 7am and I was 4cm. I was 35 weeks and 6 days.

Almost 24 hours after my first contractions at 1:45am on the 14th, my beautiful Lily came out screaming. We learned that this would be her defining characteristic for about 9mo. Around 3:30am (2:30 actually if you don't count daylight savings that happened) the docs went in after Drew. My little 5 pounder came out with a shriek as well. Two new babies - a boy and a girl. Twenty four hours of labor. My wonderful little family was now 5.

I held them both so close. They were so tiny but I still couldn't believe that they were both inside of me just hours ago. My Ella came to see them. I couldn't imagine a more perfect world.

Then came the lack of poop, emergency transport to Children's, Drew in an incubator, Lily at home without me and just 2 days old, a Baptism in the NICU, a kiss goodbye before surgery, a tight embrace after surgery, repeat, a diagnosis, 31 days at Children's, my whole family at home, a leaky ostomy bag, Drew back at Children's, Ella's second birthday, my whole family home again, Drew back in the hospital, a formal baptism and birthday party, good news, bad news, back in the hospital, heart surgery, Ella starting preschool, back in the hospital, back home, a family trip to Philly, a Thanksgiving with just the 5 of us and WAY more food than we needed, colds for everyone, many trips to the doctor and urgent care, wrapping Christmas presents, praying we all get to celebrate Christmas together at home, even if there aren't many gifts to open.

There is so so much more about this year that I both loved and hated. I love how much time we got to spend with our families. I hated the reason. I loved the outpouring of support we received from friends. I hated the distance from others. I loved watching Ella grow and learn and love her new brother and sister. I love the admiration in their eyes when they look at her right before she steals their toy away or knocks them down. I love our cleaning ladies. I love how much more I know. I hate how much more I worry.

I remember sitting in the hospital those first few weeks thinking, "This changes everything. I'll never be able to go out and have fun anymore; there's something more important." I felt selfish for going to get my hair cut shortly after Drew got home from the hospital. I remember thinking, "Things will never be the same." But I know now as I look back that sick baby or healthy baby, things weren't going to be the same anyway. We have our new ways of doing things, but we're still the same people. This year may have changed me a little (ok, a lot), but so what?! Maybe this is who I was supposed to be all along. Are there days when I wish that we didn't have to do all of the shit that we do on a daily basis? No doubt! Are there days when YOU wish you didn't have to do all the shit that you do on a daily basis? You'd be lying if you said no.

This year I've had more people that I can recall tell me what a great job I'm doing and that they could never do what I am doing. But you could. I always thought the same thing. When you're in it, when its you, you just do it. When you love, you just do it with your whole heart. When you cry, you cry hard and real. When you have kids they just are a part of you and you just do it. You kiss and bandage imaginary boo boo's. You give out hugs like you use to give out unsolicited advice and opinions on shoes or TV show's or the latest office gossip. You just do it and no part of you can imagine not.

When we got the word that this thing called Cystic Fibrosis was going to be a part of our lives way back in March, for many weeks and months I think that I feared the worst. I feared losing him. Its not that I don't ever think about that anymore. When you're faced with a terminal illness, its hard to avoid talk of things like "life expectancy". I don't really think about it anymore. With every step forward or ever step back, I just have to keep looking ahead - ugh, the hospital again, okay so what's the plan, what do we need to do. I don't plan his funeral or imagine a Christmas without him. I can't and I won't live like that. He's my son just like Ella and Lily are my daughters. It someone gets sick, we wipe noses, administer meds and keep on truckin'. I can't explain to you when or why or how it all happens, but its just how my life goes. Fighting CF is at the top of our list of things to do, but its just a part of our life, its not our entire life. The second that I cry about it, the second I treat him differently, the second I let my imagination take over, I've given in. I have my moments, but there's so much I miss when I get stuck in those moments that I've been able to overcome them and just live my life.

What would be most awesome for 2011 is the continued support of family and friends. Walk with us in Great Strides. Attend a CF benefit in your town. If you stumble upon a few extra dollars, consider making a donation. The CF Foundation is SOLELY responsible for the advances in medicine and treatment and is supported by us alone. One child dying everyday from CF doesn't qualify as important enough for government support, so its up to us. I started this blog to raise awareness and support for Cystic Fibrosis because without it there is no hope. If just one person reads our story, if just one dollar finds that cure, if it buys us just one more day, then to me its been worth it. I hope you keep reading in 2011. Peace out till the new year!

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