Thursday, December 27, 2012

Cheers to 2012

I'm sitting in bed sipping my "Severe Cold Theraflu". Two kids were dosed with Tylenol before bed and the baby has been up coughing a few times already. The healthy one in the house is the one with CF, truly a Christmas miracle. Drew hasn't yet caught what the rest of us are passing around. I credit that mostly to his super power white blood cells that are always fighting off infection. I give myself a little credit for my neurotic hand washing and germ prevention strategies. I suspect it's still inevitable that he, too, will end up with an infection of one kind or another. I just hope it's manageable from home when it comes.  Reflecting on the past year and the year to come just seems to happen around this time every year. I know I'm not alone. I have never really been one to make resolutions in the new year. There are always things that I hope to accomplish- things that I want to do more of or better, things that I want to stop doing.  On my list of things that I'd like to stop - worrying so much about that which I cannot control. It's hard, as a parent, not to worry. Add to that a child who needs something in the neighborhood of 3000 calories a day but won't eat and who loves to play and be social but can't catch a cold. He cries when we leave the house without him, not knowing that I'm doing it to protect him from the nasty RSV going around among family and friends. I worry that he will get sick...or sicker I suppose. I worry that he won't have a "normal" childhood because of my worry, or because perhaps I don't worry enough and he gets sick. Sometimes I wish I could just let him be, but it's my job to worry about him. What I can't worry about is the things that I cannot control. I'd like to try to keep that worry under control.  On my list of things I'd like to do more or better - advocate. I have an important message to share. I want to speak up for what I believe it. I'm certainly not ashamed of it. I try to educate myself on matters that are important to me and to my family and friends. I want to share what I believe in, hoping that it will make a difference. I'm not indifferent to most things and I want people to know and understand why I feel the way that I do. I can accept that not everyone will share my beliefs and views, but that doesn't mean I should not share them. You never know who you will talk to that has the power to influence real change. I want to influence real change.  So often, there is banter on Facebook or Twitter or just among friends out and about having to do with some hot button issue. No one really wants to talk about healthcare reform or politics when you're out at the bar, yet they make a snarky remark about whose the good guy and whose the bad guy and why I'm an idiot, the end. If this matters so much to you, then take the time to really learn about it, whatever it is. Have the answers to my questions when I follow up and ask you. And then take that information and go do something about it. Hopefully you went to voted this past November.  The folks that you and I elected into office are working for us. They are pitching our ideas and fighting for our causes. Go talk to them! Email them and call them and go to visit them. Let them know who you are and what it is that's important to you, whether they stand with you or against you. Hopefully you will be able to learn something from them, and them from you. I need to advocate more.  Also on my "do more or better" list is to spend time with my kids. I know that I'm here with them all day every day (trust me do I know that!). I get frustrated with them because there is so much more that has to happen here in a day than just watching a puppet show and doing a puzzle. They are growing up right before my very eyes and I want to savor every moment of it. Who cares that there is another spill on the carpet as its already beyond repair. Wearing our pajamas all day frees up about half an hour of our "getting dressed" time. Similarly with leaving the house. I complain that I need to get out, but between time spent packing a diaper bag, getting everyone dressed, filling sippy cups and packing snacks, diapers, enzymes and hand sanitizer, we lost a good 30 minutes that could have been spent snuggling and watching a movie or playing tag or hide-and-go-seek, all to run an inconsequential errand. Don't get me wrong, some days I pack a bag the night before just so we can run out on a whim to the park for a couple of hours on an unexpectedly nice December afternoon. I just need to better identify my priorities. Kids need to be first. To that point, I need refresher time. I think that this year I have been able to really identify what refreshes me. Sometimes it's a careless evening out with people I enjoy. Other times it's a day of meetings at CCHMC or volunteering in the NICU. These activities refuel me. I have heard it said that parenting is a thankless job. They take me for granted, as they should. I know that I am making a difference for them by simply being there for them and parenting them. The activities that I participate in outside of the home help me to parent them better. The joy that I feel from sharing hope with the parents of a newborn going through what we went through in the NICU is indescribable. The real life experience that I bring to the CF planning meetings is done not only to help improve outcomes for my son, but for everyone who shares our diagnosis. I feel appreciated and I know that I am making a difference and I want to pass that along to my kids so that they will grow up to be kind and compassionate people.  I don't have time to play pretend in my real life. I want to do things that I enjoy with people that I enjoy. I want to be honest and true to who I am and what I believe in. That is what i really want to resolve to do in 2013. I have a lot of energy and a lot of passion. I want to work for and for the C3N and I want them to change the world for not only those of us living with CF but for everyone who suffers from a chronic disease. I want the CF Foundation to know who I am and what I believe in and I want them to call me and ask me when they need an opinion on something. Ambitious goals? Perhaps. But it's what I want. I want to want less and give more.  I appreciate all of the emails and comments that I receive, offering comfort or support or advice. I hope that I've made a difference in someone's life. I'm going to try to continue to focus on hope in 2013. You can follow Doin' It For Drew on Facebook for updates on medical issues and Drew's health. I am on Twitter @ekeelymoore sharing stuff thats important to me. And I will continue to blog as much as time allows because I've got a story to share and I hope that it makes a difference in someone's life. Cheers to 2012! - Posted using BlogPress from my iPad

1 comment:

  1. I have no idea why this is all running into 1 paragraph. No matter what editing I do, it continues to turn out looking like this. Sorry if its hard to read!