I don’t know why I thought this time would be different. That’s not true. I do know why I thought it would be different. I thought it had been so long since I went to one that I was far enough away from the hurt of it all. I guess, stupidly, I forgot.
Last weekend, I went to “Uncork the Cure” which is a wine-tasting event to raise money for Cystic Fibrosis. When we stopped doing our event two years ago, this was the event I thought we’d end up supporting since I have a lot of friends that are wine drinkers and it was pretty affordable as opposed to “Chef’s Gala” which is downtown and really expensive. I used to hate “Chef’s Gala” because I thought it was too impersonal. It was like all of Chicago’s “society” people going to it because they were the only ones that could afford to go and that they didn’t necessarily care why they were there. That is a huge judgement made on one comment I overheard the first time I went. Some lady was talking the entire time someone was speaking about their life with CF and she asked her friend, “Why are we here again?” “Chef’s Gala” is now my favorite because it is so impersonal. Plus, I am stuffing my face so I’m not really thinking about why I am there.
Saturday was hard. From the moment I walked in. I was going to relieve myself of the guilt from not doing our event or really anything to raise money for CF. Instead of relieving it, I felt even more guilty. I looked at all the people there ready to donate money and while I have no idea any of their stories or why they were there, they were still there. Why can’t I just let the wound close and move on? Why does it feel like someone is reopening it and rubbing salt in it?
I was going about tasting the wine (oh, how I wish there was some Riesling or Moscato) and searching for food (I might love the coconut shrimp lady) when I looked up and saw the slide show streaming over and over again of kids and people who have CF. I felt the sadness coming back. I pushed through it and visited with friends of ours that came out to support us. Then…the speeches started. Not enough alcohol in the world could numb me from the feelings that came back.
I tried focusing on the advances but that was hard because with the election looming, it was hard not to worry that money could at any time stop being allocated to CF research depending on who becomes president. Hearing about how close we are to a cure is exciting but I have learned not to get my hopes up. When Nico was diagnosed, they told us they had already cured CF in the lab. They just couldn’t figure out how to transfer it to a person with CF. That was 11 years ago. So with the boys’ mutations not being the ones on the near horizon, focusing on the advancements was hard.
There was a sophomore girl who spoke about her life with CF. She talked about how athletic she was and she looked like she was doing very well. Then she talked about having to do a hospital stay and I lost it. I know this is a form of denial. I know that it isn’t all that logical but I’ve told myself over the years that we live the lifestyle that we live not only because the boys love the sports they play but that it keeps them healthy. It keeps them OUT of the hospital. It sounds dramatic but in one fell swoop, that speech brought me right back to reality and the feeling of the unknown. It doesn’t matter that the boys are athletic. This disease could still take over.
Then she talked about how much she has to do to stay “happy and healthy” and it is the same as what my boys have to do. Only my boys are rebelling. Hard. I wanted to stand up and be nasty and say that is great that doing all of that keeps you healthy and that you sound pretty happy to do it but that is not my reality. It’s not my sons’ reality. It felt like an elephant sitting on my chest with what my reality is. Leo and me CONSTANTLY nagging, never being able to let up on getting them to do it. When we turn our backs for one minute, and they are gone without doing it and they feel crummy later, I think to myself, Well now you’ve learned. You won’t fight me on doing it next time. Nope. They still fight. Even when they have said to me, “You’re right. I should have done it earlier,” they still haven’t learned because they are right back to fighting us on it.
The video came on with people talking and I left the room, not wanting to cry in front of my friends. Not being able to hold it together any longer. The disease right in front of my face. You would think since two of my kids battle it, it would be in my face a lot more but it really isn’t. It’s easy to forget or put it on the back burner so to speak.
Why did I think I could do that? Go casually to something that still breaks my heart every single day?
In all, they raised over $85,000. I’m sure it was more but we left early. It was a great event to raise a lot of money and I am so glad that someone did it. I still feel guilty and I am not as strong as I thought I was. Both are disappointing to me. Both made it a hard night.
Old wounds…still praying that they would either heal or I could find a big enough bandage to at least keep them closed.
I was pregnant with Gia in this video and dealing with a possible blood clot in my leg but it’s a good idea of what life was like 3 years ago. Since then, they have come out with a new med that is shorter in duration. Thank God for the continued research!