Here we go again - And a BONUS rant!

First, I want to offer my condolences to the Jones family. Conner, seven years old with CF, went to his permanent home with Jesus a few days ago. Mere words escape me and seem so frivolous anyway. To say "Conner lost his fight" implies that he didn't fight hard enough or he didn't do enough. Even though Conner was only here for a short time, his life touched many. His spirit, determination and caring ways are an inspiration to many who have been here long enough to have learned the lesson long ago.

I can't imagine loosing my child to such a combination of cystic fibrosis and Prune Belly Syndrome, as Sarah, Conner's mother, has. Again, not even sure how to put my thoughts in words. It's not total sympathy because no doubt Conner is in a better place were he doesn't have to fight to breathe or even worry with having the strength to move. But our selfish, earthly ways can't help but want to keep our little ones with us as long as possible. I simply pray that God would continue to comfort the entire family through this time...that He will give them peace.

As they say on the Today show "On a much lighter note..."

We've started gearing up for the first TeamSamuel silent auction in the fall. Funds raised from the auction will go toward the Cystic Fibrosis Foundation. I'm hoping for some great donations and lots of eager bidders. :)

During lunch with my friend on Friday, Samuel let out a big ... cough. A big, fat, wet, productive cough. While I noticed, I didn't want to hear it. He's not supposed to cough yet. But he did. And he has been. By this evening, he's got a (clear) runny nose that is like a faucet, red, watery eye and a 101.3 fever. After a long nap this evening, he gained his appetite and got back to his normal, 2 year-old ways. Hopefully it's just a quick bug that he'll be able to fight off on his own. That would be ideal. But, as timing would have it, we have a hypertonic saline study visit on Tuesday where he will see his regular CF doctor. She will give us some direction as to how to treat this. And, not that I want him to be sick, but by Tuesday, if it's something to really worry about, it will be obvious. Right now, it's still a cold (as if that's not bad enough).

Last post I asked the question: When did it become OK for moms to judge other moms for the things they do or decisions they make? Either I'm oblivious to it, or just don't care, but it hit me a few weeks ago that some moms out there feel like they are constantly being judged by other moms. The particular situation my friend and I were discussing had to do with nursing in public. She had chosen to not try breastfeeding, preferring to formula feed her two children. Now, after the research I did, I chose to breastfeed (sorry if this is too much info, but I'm getting somewhere). Honestly, it was one of the best decisions I've made, but it was right for me. Other moms think other things are better for them. Good for them. I am not the wellness police and while I do not understand why a mom wouldn't even try it, I'm not going to think less of her or judge her for her decision. Maybe I think others think like me. 

But then a funny thing happened: I started to notice it going on around me. I follow a popular mom blog on occasion and saw a picture she had posted of her 4 children, all under 4 (I think) at the Childrens Museum. Her children seemed clean, fed, dressed and having fun learning at the museum while spending time with their 1 mom. I mention the ration of children to mom because I have 1 of my own and keep one more most weekdays, ages 2 and 9 months. While I'm not ragged, it's a bit of a handful and it takes some planning, not to mention tons of patience, for a trip to the library. So, from my persepctive, you can imagine my awe that she would take 4 children, by herself, to a place where kids run and play and all WITHOUT a stroller. As I saw the picture, something like "SuperMom" crossed my mind (disclaimer: I don't think most mom bloggers are SuperMoms. But some have it together and I admire that. I wouldn't call someone I don't know personally, have never met, a SuperMom. The ONLY SuperMom I know is my very own mother. And you'd say she is SuperMom too, if you know her.) Back to the picture. Another one of her followers was the first to make a comment. Unfortunately her comment was something to the effect of "Please tell me that's not one of those awful kid leashes that only terrible moms use when they can't control their children." Maybe not exactly like that, but that's what I read. I thought, "Here is a mom of 4, taking her kids to a museum. They are having fun. They are under control. The leash is off. It looks like he's wearing a backpack. Give the mom a break." And that was just one instance. It's popping up everywhere and it's driving me nuts. To me, it's not OK to make a mom feel like her best efforts or her decisions are good enough for her children. Not sure about you, but I didn't get the manual from the hospital so I'm still trying to figure it all out. Sometimes I get it wrong (usually on a daily basis) but I learn from those mistakes and move on. You know, we all are learning. All that being said, why can't we just give each other a break every now and then. And if you see my son in one of those terrible backpack kiddie leashes that help keep curious kids from running away on the day I decide to brave the childrens museum with my one (possibly 2) child(ren), you can just smile and say "Looks like you guys are having fun today!" because we probably are.

Great Strides #3

Today was our third year participating in Great Strides, the Cystic Fibrosis Foundation's annual fund-raising walk. Although the location had changed, the sunshine that greets us every year was still present. And our faithful few were, well, a faithful fewer.

I'm really torn with my participation. While I feel like it's the right thing I need to do, even like I should be helping the cause, convincing others is becoming more difficult. Perhaps it's the economy, perhaps I'm not annoying enough, but this year has been the worst for getting people involved. Not just walking with us, but participating by donating to our cause and asking their friends and family to do the same.

Let's be real. Times are tough. Tell me about it. But let me say this: We (the CF community) are so close to a cure. Even improving treatment is coming a long way. Earlier this year, a new inhaled antibiotic, Cayston, was approved for treating infections for those with CF. Cayston is used to treat Pseudomonas aeruginosa, a bacterial infection Samuel has had a few times. To treat this previously, we've administered another inhaled antibiotic, which takes 30-40 minutes to administer. Cayston takes about 5 minutes. You don't have to know Samuel to understanding that keeping a mask on the face of a 2 year old boy, while sitting still, without a binky, twice a day, is about as easy as giving a cat a bath. If you supported TeamSamuel in the past, know that this approval was made possible by your generosity. That's pretty exciting! We thank you!

While I know many followers of CF Mommee have Great Strides teams of their own, there may be a few who don't have a team to donate to. Maybe I've been too quite or you let it slip your mind. No matter the situation, it's not too late to contribute. In fact, we have until the end of the calendar year for it to credit this year's walk. Just click on the link below to be taken to my Great Strides page. And share this link with your friends. If you would like for me to write an invitation to contribute to TeamSamuel, I'll be happy to do so!

We are running late

The time is quickly approaching. It's almost time for Great Strides 2009 and we have done little to fund raise. In fact, we've done one video and that's about it. There is a concert planned on the east coast next month and I'm sure there will be a nice response. Thanks Lori!

Some ideas I'm having for fundraising this year to reach our $5,000 goal:

1. We have quite a collection of autographed items: books signed by Hillary Clinton, a John Legend autographed poster, a James Patterson signed book, those are just the things I know of right now. Maybe these items will appear of eBay and be sent to the highest bidder.

2. NYPD fundraising worked well last year. We can do that again. Little coordination on my part (always a plus).

3. Postcard mailing. More junk mail? Nothing with pics of Samuel is junk. :)

4. ummm.... That's all I can think of right now. Any other ideas? Please leave me a comment with your fabulous ideas!