I know you know that Olivia has beautiful brown eyes, gorgeous and luxurious chocolate brown hair, freckles splayed across her cute button nose and a personality that never quits…but did you know Olivia has Cri du Chat Syndrome?
This week is International Cri du Chat Awareness week. Our goal during this week is to educate and inform about our children’s syndrome. We are small but mighty and trying to raise awareness of our syndrome.
Cri du Chat (kree-doo-shah) is also known as 5p- Syndrome. Olivia is missing part of her 5th chromosome…the p part! It just fell off during conception and here we are today! It’s called Cri du Chat because of the cry that most of the children have when they are born that sounds like a kitten. We were lucky to find out when Olivia was just 4 days old through a blood test. I say we were lucky because we were able to start her in early intervention right away. Some families don’t find out about their child’s diagnosis for a long time.
Olivia’s syndrome is rare; it is estimated that only 50-60 kids are born with Cri du Chat syndrome each year in the U.S. There is definitely a spectrum of effects and abilities. However, most of our children are nonverbal, have mental retardation, low muscle tone and similar facial features. You know what is really cool? They all LOVE the water and are very sweet and loving.
If you wouldn’t mind taking a few minutes to learn a little more about Olivia’s syndrome, visit here and watch our “I Can” video here. Olivia is sending you a thank you hug right now! You know what would be even better? Tell a friend about it too. Spread the awareness and the love.
Ever since Olivia “farmer blowed” her nose in public and Matt said “You know Olivia, rule #1 in how to make friends and influence people is not to farmer blow your nose in public!” to which she responded “What’s rule #2??” We thought it was so funny that we haven’t been able to let it go. Every time she does something inappropriate, we add it to the rule book. The boys and Olivia (and Matt and I) think it’s hilarious. Here’s what we’ve come up with so far:
Rule #1: Don’t farmer blow your nose. For those of you unaware of what a farmer blow is, it’s when you push one side of your nose in and blow out the other side…without a kleenex.
Rule #2: This one is similar to #1. Don’t pick your nose. This is Olivia’s new and lovely nervous habit. So when she’s standing in front of a crowd, say getting an award, she’ll pick her nose. And then eat it.
Rule #3: Ask before you kiss. Olivia loves to give kisses. But guess what? Kindergarten and 4th grade boys alike do not like kisses. Even if they love Olivia.
Rule #4: Treat grown-ups with respect. She got in big trouble at school the other day because she kept calling the teachers by their first name. She even walked up to the principal and said “HEY JOHN!”. The boys were horrified. She laughed. It’s awfully cute, but still not ok. The boys were even more horrified when we went swimming at the Y last week and she walked right up to the sheriff that was in the lobby, pointed at his chest and said “YOU’RE FIRED!” and then giggled. He responded with “Who are you, Donald Trump?” and a smile. She’s just so cute that it’s easy for her to get away with it!
Rule #5: Clothes are not optional. She still has a bad habit of getting naked when she gets home from school…regardless of whether or not we have a houseful of boys.
These are the rules we have so far. We’ll keep adding as we go. What’s in your rule book?
I am in love with this song by Alicia Keys. I know, it’s not new. But I’ve been listening to it all the time lately and I love it. I love the lyrics, I love her voice, I love the beat.
Take a look…
I’m feeling a little protective of my family these days. We just had major tornadoes rip through this area and they just missed us. My sister’s friend’s sister (got that?) and her son were killed by the tornadoes…and they live about 20 minutes away from here. It hit the town where I grew up pretty badly. Somehow, it went right around our town. But it could have just as easily been us. From all the reports I’ve been reading, it sounds as though many people were asleep and weren’t able to hear the sirens so they could take shelter. It’s just so heartbreaking…and another reminder of how precious life is.
I feel as though my little family of five fits so well together. We were out to dinner last night to celebrate my MIL’s retirment and I was sitting with the kids and just marveling at how well my kids get along and behave. Now don’t get me wrong, they argue and fight. But not very often. The boys are best buddies; they include their sister; they love each other. Olivia gets the boys laughing, she gives them kisses, she reminds them that it’s ok to be loving and sweet even though they’re boys. They’re all respectful to Matt and I…they’re just sweet and all-around good kids. When I listen to this song, I think of my family; I think of how perfectly we were all put together and how wrong it would be if we were ever separated.
We’re in this together, all 5 of us work to make it better and no one can ever get in the way of what I’m feeling.
I’m so very thankful for my precious little family.