Old Wounds

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!


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Comments

  1. Oh, I just want to hug you. I am so, so sorry that it all came rushing to you that night. You *are* strong, but you are also human and you know, sometimes it’s just overwhelming. I’d say it would be the very odd person who didn’t feel that way from time to time when in an emotionally charged environment. These are your babies we are talking about here (even if they are not very small anymore). You are not a robot…but you are an *incredible* mom who is doing a *wonderful* job and your boys are thriving. THRIVING!

    One of my biggest fears with Bobby’s peanut allergy is that, as he gets older, he will be cavalier with his food choices when he’s not around me and he already resists taking his epipen places. It’s a recipe for disaster and it makes me ill. It’s just such a natural time of rebellion (even if that rebellion is just to try to assert their own will when it comes to medicines) and when you are talking about things that have a health consequence, there is just so much at stake. I have a good friend whose high school son has diabetes and it’s been a real struggle. They need to learn, but it’s so scary and frustrating as a parent.

    I pray the money for research keeps flowing strong and advances are made at a staggering rate. <3 –Lisa
    The Dose of Reality recently posted..Operation Christmas ChildMy Profile

    • Thanks, Lisa for the prayers and support. Maybe I need to start thinking the way you do. It WOULD be an odd person to not be affected in some way at the fundraisers. So does that mean I actually am normal? ;)

  2. Oh, I am so sorry you deal with this. So sorry. I think going to fundraisers for a disease my children struggled with would be too much for me. I admire your strength.

    Thank you for sharing your story.
    JD @ Honest Mom recently posted..I was bullied in junior high. Were you?My Profile

  3. Bless your heart AnnMarie!! I am so sorry you have to go through all this pain! I so wish I could change this for you… God hand picked you to have these boys… you can do it!!! The video was incredible. You spoke with such clarity and passion. I loved learning more about you, and Leo and your lifelong journey with CF. I can now pray more specifically for you and your precious children…
    Chris Carter recently posted..Wounds Make Warriors…My Profile

    • I love that you are praying for us! I hate watching myself in that video. I was two months away from Gia’s due date and I felt a little ragged. Thank you for your support and kind words.

  4. It’s so hard when the reality of special needs smacks us in the face! My y.o. has autism and I cannot handle events like that either. Being in the midst of the battle to get through each day, sometimes I just want it to stop being so hard. Where’s the answer that will make him healthy and able to be a neurotypical boy(Hate the word”normal”) in the grade level he should be in!
    Hugs to you…and prayers that comfort and peace envelop you!

    • This is such a great comment. I just want it to stop being hard, too. Hugs and prayers right back at ya! Thanks for taking the time to read and comment.

  5. Okay, I am sitting here with tears streaming down my face and a runny nose. I’m a mess. I just wanted to reach through that video and hug you hard and tell you everything is going to be okay, but we both know that’s a lie. It sucks, AnnMarie, it totally sucks that this is not what you signed up for when you dreamed of becoming a mommy. And as you said, none of us knows what will become of our children’s lives. You are giving Nico and Tommy as normal of a childhood as you can – especially the mom nagging!! You are doing an amazing job ~ never ever doubt that!

    I have said before that I cannot do pediatric cancer fundraisers. I can talk about Joey and his story, but when I am too close to reliving it, seeing kids who are bloated from steroids, it is too much for me (I’m crying again as I type that). Thank goodness for people who really care (and even the rich old bags who don’t care but just want to give away their money – we need them, too!). So much love and so many hugs to you. I’m so glad we have found each other through this crazy mommy blogging thing. :)
    Kathy at kissing the frog recently posted..Television Isn’t All BadMy Profile

    • Aw…Kathy. I’m sorry I made you cry but you really do always know what to say. Thank you for all this encouragement and the words that I need to hear. I have to keep telling myself that I am doing the best I can. I really never thought I’d hear myself say, “I love those old bags!” :)

  6. Oh girl. You are so strong. But you are allowed to have your moments when you break down and cry. And wish things could be different. xo
    Shell recently posted..Pour Your Heart Out: Four DressesMy Profile

    • Thanks, Shell. I guess no matter how strong I seem, I wish I was stronger. I wish I could put on an armor and go out and raise a ton of money so that I felt like I was contributing to the cause. I feel like I let the boys down by not being able to.

  7. I feel the need to swoop in there and give you a big hug. I can’t even imagine how hard it is for you and your family daily. Parenting is hard enough.
    xoxo
    Alison recently posted..I Remember HerMy Profile

  8. I am so sorry your family is going through this. Mama’s only wish is to see her kids healthy and happy. I wish things could be different.
    You are such a strong personality – I admire your inner strength! Just do not be too hard on yourself – you still may have your moments of weakness for crying out loud or pouring your heart out. Do not keep all the pain inside of your heart
    Julia Reed recently posted..Fraternity Hazing: Hair-Raising Facts All Freshmen Must KnowMy Profile

    • That is so true that all we really want is our kids healthy and happy. Maybe that’s what gets me. Thanks so much for taking the time to read and comment! :)

  9. Obviously I know this feeling very well. Those feelings are normal, justified, and your God given right! Those are the feelings you need to keep putting up a good fight. You, your boys, and the rest of the family are always in my prayers. xoxo

  10. {Melinda} AnnMarie, as you know, I so understand. My CF boy is doing his vest treatment as I type this. I don’t go to many CF events. It is too painful. I probably should, but I don’t. I try not to think too far into the future. One day at a time. He is starting to fight treatments too, but a scare this summer (he had to have his right lung scraped because of a MRSA infection) has helped him see how important it is. Praying for your boys. They are close to my heart.
    Mothering From Scratch recently posted..getting off the people-pleasing treadmillMy Profile

  11. I am sitting here crying, with tears streaming down my face. I just want to reach through that screen and hug you. Hard. And tell you that it will all be okay. I hate that you all have to go through this. It breaks my heart to hear your struggles and know that you just want it to be okay.

    Know that you’re an amazing mother, giving them as much as you possibly can. Don’t forget that. Ever.
    xo
    Kimberly recently posted..Essence of Now: All Jumbled UpMy Profile

  12. Writing this with tears in my eyes. Sending you lots of hugs. My neighbor, walking buddy and good friend had a lung transplant about 6 years ago because of CF. She has good days and bad, but mostly good. Her son is now a senior in high school and her daughter is a freshman. I’m always amazed by how much she’s been through and how much she fights every day… The reason I’m telling you this is to give you hope, that even though your boys have a fight on their hands that they can still have a good life. Keeping my fingers crossed for all of you. xo
    Susi recently posted..Bringing you… The Biggest Giveaway of the Year!!!My Profile

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