Thursday, September 15, 2011

A few minutes a month

This afternoon, we were playing out front when a woman with two small kids walked up. It was a little boy and a little girl, appearing to be about the same age as the twins, maybe a little older. I invited them up the driveway to play, and when I went to introduce them, the woman said, "That's Drew, right?". It turns out that she was a friend of someone who works for the Cystic Fibrosis Foundation and had heard about Drew through her friend. She mentioned that she had been talking about ways to get her company more involved in supporting the Cystic Fibrosis Foundation, since they match all donations. Sign me up, sista! Any opportunity I have to get my foot in the door with a company or individual that will support our cause is a good opportunity in my book. We talked for a few minutes and I gave her my contact information. I'm hoping that she will reach out to me and give me the opportunity to meet with some of the folks she works with so that I can share Drew's story and raise more awareness and money for this disease.

Speaking of awareness, I'm meeting with our Congresswoman on the 26th. The first meeting got changed at the last minute and I wasn't able to meet with the Congresswoman, but I did meet with a member of her staff and it turned out to be a fantastic meeting. I'm hoping that for this go-round, I will actually get to meet with Congresswoman Schmidt. The director of the Cincinnati CFF will be coming with me to the meeting. I think that having Drew's doctor with me last time was great, having both the perspective of a parent and a medical professional. And I think that this time having Ali with me will give additional perspective on the importance of the Cystic Fibrosis Foundation and all that it has done and continues to do for this disease.

All of these meetings are a part of the Cystic Fibrosis Foundations national advocacy campaign called Make Every Breath Count. When I was on a conference call with the other state advocacy chairs a couple of weeks ago, I learned that our goal was to have 75 meetings with decision makers across the country to raise awareness and support for Cystic Fibrosis. The campaign has been running since late July, and only 25 meeting have been held. I just don't even understand how its possible that so few meetings have been held. When I signed up for this position, I agreed to advocate and to recruit advocates to spread our message. Admittedly, I've struggled a bit with recruiting folks to advocate with me. I just can't wrap my head around why.

Here's what my schedule looked like on Wednesday. Alarm is set for 6:15 to get Drew hooked up to his IV antibiotics by 6:30. Sit with Drew until 7:45 when all antibiotics are complete. We are simultaneously doing his breathing treatments and airway clearance to get everything in before our day starts. At 7:30, the girls have to be woken up to get dressed so we can all go downstairs and eat before we have to leave at 8:30 to get Ella to preschool. I also have to get myself ready and pack a diaper bag because after we drop her off, we're headed to the CFF to drop off the money raised at our Oktoberfest fundraiser and to discuss what other things we currently have going on or how we can help. I'm there with the twins from 9:30-10:45 when they lose their minds and put them back into the car where they immediately fall asleep. I pick Ella and her friend up from school at 11:30 and head home for lunch. After lunch, we played for a while, and then I had to take Drew up for his 2:30 antibiotics. That is wrapped up by about 3 and I put the twins down for a nap. I play with Ella and read some books for her "homework", and by 5 the twins are up and Ella has fallen asleep on the couch. I realize that I've gotten nothing ready for dinner, so I call my wonderful husband and request pizza for dinner. He is home with pizza at 6, and at 7, its time for IV antibiotics and breathing treatments and airway clearance again. He takes Drew upstairs for all of that and I throw the girls into the bathtub. By 7:45 everyone is ready for bed. The house looks like a bomb went off in it and I realize there are several messages on the answering machine that I failed to return (doctor, insurance, marketing research company asking if I can participate in an upcoming study..., um, no, to busy). We throw in some laundry, get cleaned up from dinner and our busy day, and at 10:30 we wake up Drew for his last dose of antibiotics for the day. He usually just sleeps on me while Martin hooks him up. Its currently my favorite half hour of the day. After that, I get a shower, send a few quick emails from my iPad which lives on my nightstand, and call it a night around 11:30.

I really don't have much extra time in my days. I'm not complaining, I love what I do. But when I ask parents and relatives and friends to advocate with me and they tell me that they "don't have time", what I hear is that they don't have motivation, or the right attitude about this. I send a form email, maybe once a month, to Congress, where I insert my story because I choose to do so, not because I have to. It takes 3-5 minutes. I don't have time not to do it. If I don't request that they not cut funding to the FDA because it may affect my son's life, who will? They aren't making these decisions willy nilly (though it sure seems like it these days!). But seriously, the job of these politicians is to hear what we, the people, want, and to work on our behalf. I chose them to work for me. They need to hear and understand what is important and why its important from people who its important to. In my "spare time", I fight for my son. I'm not asking you to take every free moment you have and spend it on helping me. But if you can spare maybe 30 minutes a month to forward on an email or post a link to a new hot topic or inform your friends and neighbors about Cystic Fibrosis and Drew and why finding this cure is so important, that's all I ask. Its a break in your facebook time after the kids went to bed. Or a quick check of your email while you're watching the 11:00 news. Its so little but it means so much.

I just finished our 10:30pm antibiotic dose, with Drew fast asleep laying across me. I can't imagine my life without him. If you'll consider being a part of my advocacy campaign, click here for some more information or email me. I'm not exaggerating in the least - a few moments a month can make a huge huge difference.

1 comment:

  1. you are amazing with all you do! I only have one (right now) and find myself struggling to get it all done. We have a possible first round of home IV meds coming up and I am nervous about it. Ayla's 4 and in school so this is going to be bad. She loves school. It's very frustrating when you can't get people involved. You sound like you are doing your part and that's all you can do! What an amazing momma your kids have...