Anger Issues: Part 1-Mama Bear

Can I honestly say it’s been a good week this week? No I cannot. Is it better than last week? Yes, yes it is. So that is something. If you come back tomorrow you can see Anger Issues: Part 2 and if you are raising a daughter, you won’t want to miss it.

I need to pour my heart out.

I am angry. I am angry that Nico is going to be 15 in less than a month and I am STILL arguing with teachers about letting him go to the bathroom. He is still being made to feel embarrassed by people I entrust him to. Let me be clear. His classroom teachers have been wonderful in high school. Almost all of them have been supportive. I don’t know what it is with gym teachers and Nico (with the exception of his last semester gym teacher who treated this issue like it is…not a big deal). Is it because he is an athlete and they think he is slacking? Do they expect him to go full force in practice and in gym? Probably. I mean it is high school P.E. It’s the class that is going to catapult him into Yale or Harvard. So taking three minutes to pee is really going to be a detriment to his grade and his future career plans. I don’t shout from the rooftops all that I am proud of with Nico but he does not use CF to get out of homework. He does not use it to go to school late because he is EXHAUSTED from school, practice, homework and then treatments on top of it. He wants NO special treatment. ALL he wants is to be able to quietly go to the bathroom when he needs to which unfortunately is often. He is getting mostly A’s and a few B’s and I have not heard ONE complaint about him abusing his permanent bathroom pass. Why, then do some teachers decide to give him a hard time about it???

Nico told me not having a 504 plan is better. He likes it better this way. If I thought he’d need it for more than just him going to the bathroom when he needs to, I’d push for it but he doesn’t. HE IS DOING FINE! We are blessed beyond belief that he is as healthy as he is and that it doesn’t interfere so don’t you agree that it would be ridiculous to have an education plan in place to pee? I sat in more meetings in junior high about my son being able to go to the bathroom that it was laughable. It was infuriating that with all that the schools and teachers have to do and worry about, some teachers get hung up on giving my son a hard time about going to the flipping bathroom.

His gym teachers constantly think he is using it as an excuse to get out of doing what they are doing. They see it as him being disrespectful. He’s getting an A in this class so obviously he isn’t missing that much of the class. I feel bad for him because when the teacher asked him after taking 3 minutes to pee if he thought he could just go to the bathroom anytime he wanted, Nico, knowing that he has the permanent pass that says he can said yes thinking his teacher knew. His teacher took that as back talk and told him to see him after school. Nico doesn’t get in trouble often so was upset the rest of the day, texting me telling me. I emailed the teacher (yes, I was one of “those”) and told him about the pass and said that if he felt Nico was disrespectful in any way, I’d have him apologize. He answered sounding like someone who exerted authority because he can and that Nico was avoiding the track (if Nico had done what the teacher wanted him to do, which was to go back and tell the teacher that he had to go to the bathroom and then go back to where he was in the first place, it would have taken 10  minutes instead of 3, so was he really avoiding the track?). That set off the Mama Bear in me. I said the same thing I said here and when Nico went to see him, he told him to not do it again. What was the point of that? So, he almost misses his bus home for this teacher to give him a hard time about peeing only to tell him, just don’t do it again?

Just let the kid go to the bathroom in peace! Jeez! Am I really STILL having this discussion this late in the game??

What do you think? How would you have handled it? Would you have been a Mama Bear (come out swinging) or a Mama Ostrich (head in the sand)?

You know what else adds to anger issues? Feedburner saying I lost all 78 of my subscribers. Why, Feedburner, just why?

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Update on the Boys’ Appt.

It’s rare that I do two posts in one day but the other one was just for fun. This one is to thank everyone that sent prayers and good thoughts our way. The boys had a great appointment! Nico gained 12lbs since he was last there and Tommy gained 8lbs. They both grew a few inches and their breathing tests were the best that they’ve ever been and they’ve always been pretty good. All around, it was a good appointment and I want to thank Leo very much for taking the boys. It means a lot to me that he knows I have a hard time sometimes going to those appointments so he steps up and takes them. It won’t always be that way but for now, I appreciate it so much.

I feel blessed beyond words right now for all good news at all doctor’s visits so I will quit while I’m ahead and sign off for now.

Have a great weekend! Doing anything fun?

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Recycled Post: The Gifts of CF

In light of the boys’ appointment tomorrow, I thought it would be nice to revisit the post talking about the gifts that Cystic Fibrosis (CF) has given me. It was one of the most challenging posts to write but worth it to hang onto something when the darkness of CF looms around me.  There are so many negatives to living with this disease that I never thought about the positives. Click here to see what I came up with: The Gifts of CF

 

Since anytime I am talking about CF, it feels like I am pouring my heart out, I linked up with Things I Can’t Say and since I wrote this post before I was in the blogging world, I am recycling it with The Mommy Mess.

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Tidbits from the Weekend

It was a busy one. A good one but really busy.

Friday, we had the CF fundraiser and let’s just say that the night started with us getting to the place an hour and a half later than I wanted. For those of you that know me and know how I hate being late anywhere, you can guess what kind of mood that started the night off with. I had to run through the tasting part but did get to meet Fabio from Top Chef. People weren’t really taking pictures with him so I didn’t even ask plus, at that point, I was starving so it was more about the race to taste everything. I was basically a teenage boy who is so hungry, they grab at food, shoving it in their mouth not taking caution of how hot it is and burning the whole inside of their mouth. I did it every.single.time. Unlike last year, I didn’t get many pictures. I only took one of Leo and me.

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A lot of money was raised and I only had to leave the room once so that I wouldn’t get upset in front of people so other than me hating being dressed up because my feet will never be the same, it was a nice evening. Thanks, Deo and Gina! (Gina, you look FABULOUS!!!)

Saturday, I opted not to go to any basketball games and instead cleaned the house for the sitters that were coming. And if they are reading this, yes, it was messier than what you saw. I tried to catch up on laundry and keep Gia on a schedule so that she wouldn’t be horrible for the sitters. This translates to her wanting lots of Lego® towers and several tea parties and no nap. I missed Nico’s game where someone had said it was his best yet (of course because I am at every other one) and Tommy’s where he got beat up pretty bad. He’s usually on the side of “lost by 1 or lost by 2″. Poor kid. Dinner was filled with so many laughs that my stomach hurt. It was so good to catch up and have an easy night of eating and drinking and talking. Our kids might be different ages and our lives might be upside down crazy but it was like time had stood still and we were right back to when we were in our 20′s. I needed that. I think Leo needed that, too. I say it all the time but there is something about being with people who knew you before “life” happened. Something inside of you clicks and you remember who you used to be before kids or marriage and if you miss that person, it feels good to revisit her. It makes going back to “life” a little easier. Thanks, Heather and Andrew for babysitting! The kids love you guys.

Sunday came and I was in charge of Tommy’s team’s uniform fitting. Yes, my friends, we have already started baseball. It was good to see the families again and it went off without a hitch but all I wanted to do after was crawl in bed. It was raining and cold and I felt heavy. I couldn’t put my finger on why but I felt like the last thing I wanted to do was head out to a basketball game but I had no excuse and Tommy wanted me to go. Youth basketball…brings out all the uglies. Sit a bunch of parents in the stands from both teams and it gets UGLY. I am happy to say that our team is filled with a bunch of down to earth parents that remembers that these kids are 11. The other team…not so much. We moved to the other side pretty quickly but not before I saw that one of the moms was a mean girl from high school. Did she recognize me? I have no idea. For a moment, it seemed like she might have but I wasn’t going to go out of my way to say anything since she was a “louder” mom. What is amazing to me is that when I saw her, my mind went right back to when I was 16 and she embarrassed me in front of our whole math class. She asked really loudly in front of the class if I liked a certain boy and then laughed and said that he didn’t like me which made everyone in the class start laughing. Funny thing was, I was friends with the boy she was talking about and I already had a boyfriend which is what I said at the time but she still embarrassed me and I still remember it. Years later she tried to get a job in my district. I didn’t do anything to make sure she didn’t get one but I wasn’t upset when she didn’t. And there we sat with our kids playing against each other. Tommy’s team won. Tommy had two bloody noses from kids throwing elbows but our team played fair and won in overtime. I think the victory was that much sweeter since the other team (one that is from a town that is notorious for beating everyone) was filled with people who were yelling while our kids were at the free throw line. THEY ARE 11!

After I got home, I felt that heavy feeling again. And then it hit me…I think I’m getting sick. My body ached, my throat wasn’t horrible but I could feel a sore throat coming on, my nose was stuffed and my head…my head felt like there was a little drummer behind my eyes. I was hoping to just lay down with Gia and go to sleep but she and Belle kept goofing around so I left and went to bed. Just left the house the way it was (not good) and went to bed. Gia eventually fell asleep, Tommy and Leo came home from his second game and everyone got their homework done and went to bed but I don’t remember any of it. I was in bed, sore and achy praying that I’d feel better today because unlike anyone else in this family, I don’t get a sick day.

When I woke up this morning, I thought, I am not sick, I am not sick, I am not sick, today will be pajama and movie day but I am not sick. I can’t be sick. Belle has a volleyball game tonight. I’ll pop a Sudafed 12 hour and be fine but it definitely has me thinking about the days when I could hunker down in bed, have my mom bring me food and emerge a few days later feeling all better.

Can I get another weekend day to recover from this weekend?

What about you? How was your weekend?

 

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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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Was I Wrong?

I really don’t want every “Pour Your Heart Out” post to be about Cystic Fibrosis. I really don’t want any posts to be about it at all. This is not a blog about it. It is about my life, though and as much as I hate it, CF is a part of my life and it is something that breaks my heart continuously so it finds its way in here.

I mentioned yesterday that I had Nico’s conferences and I think I screwed up. His teachers had no idea that he had CF. That he battled anything. He was just Nico to them. He was a good student. He was a social student. He participated in class. He was a football player. He was a kid that sometimes coughed or needed to use the bathroom. That’s it. And then I screwed it all up. I told them.

I told them because he was embarrassed by his cough so I wanted them to know he wasn’t sick or contagious. I told them because sometimes he might have to leave class and be gone for what is a normal amount of time so I wanted them to know he wasn’t goofing around or abusing that time. I told them because enough time had passed by so that they know him and won’t judge him because of the hand he was dealt and it isn’t a secret.

Judging by their reactions, I think I was wrong. I hate being wrong. I especially hate being wrong about this stuff. The first teacher, the science teacher, went all technical on me. She knows what the worst case scenario of the disease is and was very black and white about it. “Do the coaches know? How is he affected? Treatments, meds? We do a unit on genetics and CF is part of it. Leave him in or have him leave?” Ugghh…I just want him to be able to use the bathroom when he needs to. She was very, very understanding and nice about the whole thing but immediately, I wanted to take it back. Too much…too much.

His social studies teacher is a huge, linebacker-sized, older man with a deep, booming voice. We talked briefly about Nico’s performance in his class, talked a little bit about football and then I shared with him that Nico battles CF. I was NOT ready for his reaction. He got emotional. Quiet and emotional. He just kept saying, “I had no idea” and “Wow” and “Thank you for trusting me with this information.”

His math teacher is young and enthusiastic and talks really fast. I liked her immediately. When I told her, she was just shocked. She sat there with her mouth open at first and then said she did notice that he was tired a few of the classes and she wondered if something was wrong. She was glad I told her and said, “I would have never known.” I love when people say that. Just love it because it makes me think that the fears that I had that the boys wouldn’t lead a “normal” life are not coming true. This time, however, I got a sinking feeling.

Should I not have said anything? Maybe I was wrong to tell them.

I overanalyzed what I said to each of them. I said the same thing I always say, “He’s healthy and the same kid you know him to be. It just takes some effort to keep him healthy. He doesn’t use it as a crutch and doesn’t want any special treatment.”

I struggled on the way home because it was like reliving the first time I heard he had it. And then I thought again, “Maybe I should just have kept quiet.” “Did I screw up the chance for him to be like everyone else by telling his teachers that he is different?” “What did I do?”

When I got home, I told Nico and he wasn’t that thrilled that I told his teachers. He wasn’t mad but he asked why I did. I told him and the subject was dropped. Until…

He asked, “Are they going to treat me different now? I hate that.” God, I hope not (yes, as the email queen, I sent one out asking that they don’t).

Leo wasn’t that thrilled that I did either. He just said, “You probably didn’t need to tell them.”

So I was wrong. I hate being wrong.

Another sleepless night wondering.

 

Thanks, Shell for giving me the space to vent:

 

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An Open Letter to Explain

Dear Person that thought it was funny to tease Nico because I bought a mug with his picture on it,

First of all, I get tired of buying pictures that end up in a drawer somewhere so this year, I thought I’d do something different. I love a good cup of tea or hot chocolate (or hot chocolate with a little Bailey’s in it) so the mug seemed like a great idea. I know it wasn’t your intent to embarrass him. It was all in good fun, just fun-loving ribbing. Well, it’s fine and he got over it but I want to explain something to you.

It’s not your fault that you don’t get it. We made the decision to keep it from you what a special kid Nico is. The mug doesn’t just represent an overzealous mom of a freshman football player which is how you portrayed it. It represents so much more. It is a symbol of a kid that battles something so much bigger than he is or that you are. It’s a symbol of a kid that has never let up on his dreams even though his body sometimes is screaming at him to. It is a symbol of a life lived despite obstacles that reduce him (and me) to tears. It is a milestone and an odd beaten.

You probably don’t know how hard he is working outside of practice to fight the effects of what he battles. Gaining weight is one of the harder things to accomplish when you battle CF and Nico is committed to doing it. It’s not your fault that you don’t know his rigorous schedule of waking up early, doing treatments, going to school, going to practice, coming home and eating, doing homework, lifting weights, eating again, doing treatments and going to bed. It’s ours. Did we make the right choice? Nico begged us not to say anything. He was afraid that he’d be judged by it before he could prove himself. He’s a normal teenager that wants to be like everyone else. Do you know how many kids battle what he does at his high school? None. He’s the only one. Imagine what that feels like to a 14-year-old.

Nico was throwing/holding a football before he could walk. He was 2 when he did his first Little Sportsters class. He was 3 when we found out he had CF. Thoughts of him ever playing football fell by the wayside and were replaced with would he live a normal life? He never thought otherwise. Of course he’d play. And play he has done. That mug…it’s a testament to his never giving up. To not letting CF win.

I love that he teaches me every single day what it means to love something enough to fight for it. To battle through the cards life has dealt you. To have something that you could easily lean on to make life easier but choosing instead to overcome it and NOT let it win. NOT let it define you. This mug that was the subject of a joke…this mug is a symbol of someone amazing. So go ahead and make jokes and tease. Say what you will but I love my mug because to me, it’s not just a mug.

Sincerely,

Nico’s overzealous because he’s going to beat the odds mom

 

Thanks, Shell for giving me the space to pour my heart out:

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What Not to Say to a Mom of a Child That Battles Something

They are our babies. We love them with all of our hearts. Whatever hand we are dealt, it is ours so when people say, “I don’t know how you do it,” the answer is simple. You just do it.

Today I am over at Kristen’s place: A Little Something for Me at www.alittlesomethingforme.com She is a wonderful writer and mother of 3 and like me, motherhood came with a few unexpected surprises that we never saw coming. Click the button below and visit me over there while I talk about a few things I’d rather not hear. While you are there, take a peek around and leave a comment so I know you were there. I guarantee you’ll appreciate Kristen’s way with words and will enjoy reading about her family. She has become a wonderful friend that I feel lucky to have.

Thanks for hosting me today, Kristen!

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Parenthood

Best show on TV (especially with Friday Night Lights no longer on). I don’t know anyone that isn’t touched by this show. This show, week to week, makes me laugh, makes me cry and it is so right on that it is hard not to feel gutted by the time it is over. I am not a political person and I don’t live in Chicago so it is frustrating to wait all week to see it and have it be interrupted by the new mayor of Chicago. I know it isn’t politically correct but I could care less at this very moment what he has to say in his speech(maybe at some point, I’ll care but not when I looked forward all day to hearing the theme song, Forever Young by Bob Dylan and hearing the song isn’t the same as hearing it with the montage of all the characters). With the internet, couldn’t his speech be on AOL, Yahoo or MSN?

Anyway, last week, like most weeks made me cry. When Kristina was planning Max’s party and it turned out that the very strange man that Max wanted to host his party had Asperger’s like Max, the look on her face…I knew what she was going to say. A fear, that as a parent of kids that have Cystic Fibrosis, I could relate to. “What if when he gets older, no one wants to hire him because he is the strange guy?” “What if a coach doesn’t pick him for the team because he doesn’t want to be responsible for a kid that has a medical issue?” “What if a girl doesn’t like him because he has CF?” And then the party was chaotic and she looked so overwhelmed and what mom can’t relate to that and then in the end, seeing him so happy and for that moment, he was just like any other kid. He was the star of his bug party. Isn’t that what we parents want for our kids? To see them in those moments where they shine. It doesn’t matter what it is…just something that makes them happy and that they are good at. Whether they are good at music, school, sports, being social, being political or even like Max, bugs. Just something that puts that fire in their eyes. You could see the turmoil in Adam and Kristina’s faces. They were trying so hard to cling to what they thought the party should be like and then when they were in the midst of it, the pain in their eyes because it was nothing like what they had thought and then the acceptance of the fact that it was everything that Max had thought it was going to be so it was okay. That episode really nailed that we have a certain idea in our heads of how things are supposed to be and more times than not, if we would just let go of that and let things be, they might not be what we imagined but parts might even be better.

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