Thursday, September 26, 2013

California or Bust

Last year JJ, Ella and I were lucky enough to be able to attend the National CdLS Conference in Chicago. When I first heard about the Conference I was deep in the pits of my grief/denial/wanting nothing to do with those 4 little letters. I had absolutely no interest in attending. I did not want to admit Ella had this syndrome, and definitely didn't want to meet anyone else who did. But as the months went by and the grief lessened I began to ease out of my shell and talk to other CdLS moms. They encouraged me and inspired me and I realized what an invaluable opportunity attending Conference would be. Even if I didn't want to admit it, even if I still didn't want to be in this club I never asked to join, even if I didn't even get along with any of the other moms in person, I knew it would be good for Ella. It would be good to learn more about what to expect in her future, what things to look out for, how we as parents can provide her with the best life possible. And the opportunity to speak with doctors who had not only heard of CdLS (which are few and far between where we live) but they were experts on it? Totally priceless.

We signed up. We decided not to take the boys with us because we wanted to really be able to focus on Ella and get the most out of the Conference for her, without being distracted by two rambunctious little devils darling boys. We decided to drive since it would be cheaper and it's not that far. (Well.. when you drive at night and everyone's sleeping (myself included) it's not that far. When you drive during the day with a grumpy baby who is not happy about sitting in her car seat for 9 hours and no one is sleeping.. it turns into really far.)

Anyways.. we learned so much at Conference and were able to meet so many wonderful new friends. The opportunity to meet other children with CdLS (who at that time the closest family we knew of lived a hundred mile away) was amazing and learning from other parents who have lived through the same struggles we are facing, who have navigated these waters before, and who just 'get it'.. it's incredible. I left Chicago knowing that even though the city was Illinoing (hee hee--still funny over a year later..) I definitely wanted to return to another Conference in 2 years.

Which is coming up next summer. And which I am totally excited about. And which we would LOVE to bring our boys for them to be able to meet other people with CdLS besides their sister, and be able to make friends with other siblings and to learn and experience people of all differences on a whole new level. And which we would love to be able to talk with experts about Ella again now that she is so much older and changed and facing different obstacles from the last time. And which would be awesome to see our CdLS friends from all over the country that we would otherwise have no opportunity to see. And which this time is located in Costa Mesa, California which is totally awesome.. except which between airline tickets for SIX, hotel rooms, food, transportation.. is going to cost us about a billion dollars.. Or at least it feels like it.

At the beginning of this spring I had such high hopes to start fundraising to help us out. I planned on starting small with a Bake Sale, but couldn't figure out when/where to do it at. Plus, it was a ridiculously cold and rainy spring that there just never felt like there was a good time. Then the summer came and went and I  was so exhausted and unmotivated from being 9 months pregnant that nothing got done. And now I am so busy with 4 kids and a newborn that most days I can barely find time to make the bed. (Okay in all honestly.. I don't try that hard to make the bed, but still.) And by now I've just gotten so gosh darn good at making excuses that I'm wondering how anything will ever happen..

So here's where I stand. I want to do something to help raise money to attend the 2014 Conference. And I'm not scared of work. I'm totally willing to do the hard leg work of whatever it is I decide to do. But the thought of planning/coordinating any kind of event sends a rush of panic through my veins. Planning/coordinating/being in charge of something is not my God given talent. Nor is it a learned talent. In fact, it has NO place in my little world of talents at all.

I think I could handle a bake sale, but where? Just outside a store? Or at an event? It seems like most events already are raising money for something so I'm sure they wouldn't want me butting in. I know I need to get going on this because winter will be setting in soon in these parts, but I am feeling a little anxious about having to take charge and make a decision. I've thought about hosting some kind of dinner or something and I've had people offer to donate items for a raffle, but then there's that paralyzing fear of planning something. On my own. Where do you even start with something big like this? How in the world would I know what to do, how much food to make, where to hold it. See? My heart is racing and my blood pressure is through the roof just thinking about it!

And then there's the fact that asking people for money to help me go to California seems a little ludicrous and makes me more than a little uncomfortable. I mean.. why should people give us money? There's plenty of other amazing organizations out there that are asking for funds. There's sick kids and people battling cancer with unpaid medical bills. There's food programs for hungry people and homes for unwanted children. Why would someone want to help me? (See what a horrible saleswoman I am? I'm already talking people out of helping us before anyone's even signed up to help.. pathetic)

So locals.. if I were to do a bake sale, does anyone have any good recommendations on where to have it at? What kinds of things go over well? CdLS parents-what fundraising ideas have worked for you? Ideas? Everyone else-do you have a talent for planning/coordinating and want to help me plan/coordinate something? Doctors-can I get a dose of one of those anti-anxiety meds to help me make it through this?

Or does anyone just want to shut me up and donate a couple billion dollars to the cause?? Kidding! I would settle for a couple thousand.. ( - :

1 comment:

  1. Could you do a bake sale at church??? That seems easy and less stressful!

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