Tag Archives: cri du chat syndrome

Wanting What You Can’t Have

I’m reading this truly inspirational book, Women Food and God by Geneen Roth, and I’m finding something on each page to blog about. Seriously. Has anyone else read it yet?

I’ve struggled with my body image ever since I can remember and it seems I’ve been on a downward spiral about my looks for a while now. I picked up this book to, hopefully, help with that. It turns out that this book is about so much more than eating and weight and body image…especially if you’re looking.

One particular passage reads: “Hell is the lack of connection between the thought that she wants to eat the entire cake and the reality that eating the cake would send her into a diabetic coma. It’s not her eating that is killing her, it’s her refusal to accept her situation.” Now, I don’t have a problem with wanting to eat an entire cake. But I do have days where I would like a different situation. It’s true.

Days when Olivia accidentally pees on the couch and then throws her poopy diaper down the stairs only to have me step in it and then throws her macaroni and cheese all over the floor because it’s too hot and the dogs are barking incessantly because I’m not right there to let them in and Matty’s crying because he doesn’t like whatever’s on his plate and Gabe’s complaining that I didn’t cuddle with him long enough before bed and Matt’s been gone the entire day. Days like that. Where I want to be anywhere but my kitchen dealing with all of this crap. Days when if I had a genie in a bottle I’d use all 3 wishes to take the Cri du Chat away so she’d use the potty like a normal 9-year-old and eat her damn mac and cheese. Days when I just want normal. I don’t want stares, I don’t want questions, I don’t want another doctor appointment, I don’t want her to be who she is. And those days ARE absolute hell. To get caught up in that line of thinking is absolutely miserable. Because guess what? There’s no genie. She’s not going to be “fixed”. My life is not going to be “normal”.

But you know what else?

I’m ok with that. I have my day in Hell and then I get over it. I don’t dwell on the fact that my life is the way it is. Because can you imagine how awful it would be to spend every day wishing your life was different? That is Hell…and who would want that?

Here’s hoping today’s a normal day…and not a day in Hell.


2nd Annual Olivia’s Open!

It’s Official…the 2nd annual Olivia’s Open is in 2 months!!

Can you believe it?

Last year was the innaugural Olivia’s Open golf outing. We raised over $6000 for the 5p- Society of the US. (Olivia has Cri du Chat or 5p- Syndrome.) This year my goal is $10,000.

Will you help me?

I’m looking for…

**golfers — my goal is to have 100 golfers this year. The outing takes place at Bedford Hills Golf Course in Temperance, MI. Are you close? If you don’t golf, do you know someone who does? It’s a bargain outing at the price of $60 per golfer or $220 per foursome. There’s also mini-golf the day of the event for $5 per person…perfect for family members who want to participate but don’t golf.

**hole sponsors — my goal is to have all 18 holes sponsored this year. It’s $250 per hole. You get your information/ad on my website, on the flyers, in the program the day of the event and a large sign at the hole. It goes to a good cause!!

**silent auction items — do you make something or sell something really cool that people would want to bid on? Send it my way!

**donations — if none of these other options trips your trigger, you can always send a donation our way. I’ve set up a chip-in page where you can easily donate.

**blog auction — coming in the next few weeks I will be auctioning off several awesome items including some beautiful Stella & Dot jewelry!! Stay tuned.

I would appreciate any help anyone can offer. We are such a small group of families in the 5p- Society because the sydrome is so rare; that makes it even more difficult to raise money for the society. Donations are used for national conferences where we gather and learn how to best provide for our children; for research; for materials to send to families, especially those who are new to the society. Olivia’s Open will also be making a donation of a trike to Ambucs this year; this is the company that donated Olivia’s awesome trike!
I appreciate you taking the time to consider donating. For more information, you can visit Olivia’s Open page here. Thank you!!