Thursday, April 28, 2011

Why I need to keep a bath crayon in my shower

I feel like the 10 minutes a day I spend in the shower are some of the most productive for my thoughts. Then, by the time I get out, dry off, get dressed and wrap up whatever else I need to for the day, I've forgotten all of my good thoughts and when I get on the computer to blog about whats been going on, I have nothing. But I have so so much I want to share. I'll give it shot....

IV Antibiotics
My sweet baby boy slept on me while the IV pump hummed on the table just over my shoulder. I hate that we have to wake him up to get him his 10pm dose, but it is oh so much better than the alternative of being in the hospital. With his head on my chest and his arm draped across me, I can smell his sweet breath and could just live in that moment forever. There is truly nothing better in the world than a watching sleeping baby, innocent and carefree. My heart so full of love for him that it could just burst. And then the buzzer goes off on the IV and I must return him to his bed where I know he will rest better.

Tomorrow, some friends are holding a bake sale at my husbands office to raise money for our walk. I grossly underestimated the time brownies take to cool before you can cut and package them. I'm working on batch 5 as we speak. I'm trying to print out some pictures and donation forms so that we can make the most out of the event.

I'm also trying my best to drum up some support for the Sicilian Dinner fundraiser that some members of our Philadelphia team are hosting. Its on May 7 and I want it to be a success. I want everything to be huge. Maybe thats my problem - I'm going for breadth and depth and should really just focus on one or the other. I can't though. I've gotta do it. If not me, who will.

We had Chinese food for dinner the other night, and this is what I found inside my fortune cookie:
Giving will make you smile. And I don't mean just donating to my walk. Giving your time, you're energy, your attention. Giving will truly make you smile.

I mentioned a while back that I was going to be volunteering for a new program they are starting in the NICU at Cincinnati Children's called Parents TOUCH (Together Our Understanding Creates Hope). I talked with a mom of 9 today who is currently involved with the program and was reaching out to me to let me know how much I will be able to get out of this by giving myself to the parents who currently have a child in the NICU like I once did. Just talking to her motivated me. I want to do this. I don't have a lot of free time, but I want to give back. I want to help other people and this is just the way to do it. This woman had described the program as the missing piece in her life that made her heart complete. She's got 9 kids, and this is what made her life complete. I've gotta do it.

Another way I'm giving back is by volunteering as the State Chair for the CF Advocacy program. I'd love to make it more than it is. Its really not a lot of work, and I don't want to over think it, but I want it to be impactful. Right now, it involves emailing legislators when public policy issues involving Cystic Fibrosis arise. By emailing I mean personalizing a form letter to preselected governors and congress people and representatives. You can almost immediately expect a form response from them thanking you for your email. They must get hundreds of emails a day. I want them to remember me. I want to show them a picture and see the raw emotion of a parent who deals with this day in and day out. I want to take people to meet them and share their story, and I won't quit until I get what I want. Sidebar: If you know me and my negotiating skills, I will succeed.

The tough thing here is the time required to do this, to actually make this happen. I want to sit down and research things and have a better understanding of how systems work and what I need to do to get what I want. I'm asked to recruit a team of advocates, and I'm still looking. Of course any family members reading this will be emailed asking for their support once I get my act together, but what I need for my "team" is folks from Ohio who will help to support me. And I promise you that your work will be limited. I won't ask you for much. I will happily write the emails and contact the appropriate people. I just need you on my side. If I need another story to share, I need you to offer yours. If I get my way and can meet, face to face, with some of these people, I want you to come with me and bring your pictures. Maybe a day a year. Just twenty-four hours in a whole year is all that it would take. Can you help to support me on this mission? Susan G. Komen had a passionate sister who created an empire to raise awareness and support of a cause near and dear to her heart. I want people to say that about me someday. Email me if you will join me.

Maybe with a bath crayon in my shower I can organize my thoughts a little better and post more often. If you're in or around Reading, PA next weekend, come to our spaghetti dinner and tell everyone you know about it ($15 for adults, $7 for kids). Here's the link again -

Quick funny story unrelated to all of this that I think is cute enough to share. Lily has taken to biting. Her teeth are razor sharp and it seriously hurts. I've yelled at her. I've put her in time out (as well as you can put a 1yr old in time out). I've even bit her finger, just lightly, to show her that it does not feel good. Yesterday she got mad at Ella and bit her. Ella cried and Lily went to timeout. I had told Martin about it, and that night at dinner he asked Ella what happened today with Lily. Ella's answer - "She tried to eat me!"

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