My friend Amy always teases me that you really don’t have Cri du Chat. That it’s all a mistake because when you look up your syndrome, it says nonverbal. Most children with Cri du Chat don’t have words or very few. Because of luck and a lot of hard work, you have words. Tons and tons of cherished words.
When you were small, your Dad and I would have conversations about how we would much rather you had words than being able to walk or ride a bike. The physical delays we could make up for but words? How would we make up for that? I distinctly remember when you were around 5, and we were trying to get you a communication device, your Dad saying to me “I just want her to be able to tell us what hurts if she’s hurting and what she wants to eat if she’s hungry.” That’s all we wanted. We were blessed with so much more.
There’s not a day, a moment when you’re with me really, that I don’t marvel at your language. On my birthday, you brought home a card that you had made yourself. Inside were words that you chose just for me. The card read:
Happy Birthday! Heart. Sorry. It’s my brother’s fault. Fart….tttthhhhh!!! A big hug.
I will save that card forever because it contains your words. Exactly what you wanted to say. And you were able to say it.
When we were at Mohican State Park and your brother and Dad were climbing the 80 foot tall fire tower, you looked up and then looked at Gabe and said “Holy hell that’s high!” You have no qualms about spouting out a “bullshit!” appropriately or a “Moron!” when you feel like it. Your words aren’t always pretty, but I love them all the same. You constantly make us laugh with your funny turn of phrase.
Every day you tell me “Mama? You’re so beautiful.” or “Mama? You’re so kind.” or “I love you so much, Mama.” or “How many kisses do you want?” It’s endless all of the poetry that comes out of your mouth and is directed at me. It makes me absolutely glow inside.
Last night we were reading “Would you rather be a bullfrog?” before bed. After each choice, I’d stop and wait for your answer. You’d think for a moment and answer and give me a reason for your answer. “I’d rather be a butterfly. Because then I’d have wings and could fly.” Matthew was looking at me like I was nuts because I was alternating between joyous giggles and happy tears. You, this girl who wasn’t supposed to have words, were answering thoughtfully. It was a joy to behold.
I don’t know what I did to deserve you. I certainly don’t know what I did to deserve you and your beautiful, precious, cherished words. But I’m so glad to have them…and you.
I catch myself, usually in the car, asking Emma “Emma, please stop talking!” 3-5 years ago, I never would have thought I would be asking her that. Back then it was “please use your words, any word!!!” We’ve come a long way baby!!
So sweet. Love how you focus on what you have and not what you don’t. It is a great reminder for us all. :o)
This post is so beautiful! What an amazing girl you have!
I can relate to the thoughts you had about prefering Olivia to be able to speak instead of walk, etc. I felt the same thing.
These are some beautiful words, Tiffany.
Wow. She is obviously lucky to have you too…and your beautiful words. Like mother, like daughter. 🙂
This makes me SO happy!! It’s crazy how words become a huge part of your life when you have a child with a disability. I am proud of Olivia for how far she’s come and I’m proud of your whole family for pushing and encouraging her.
The picture your daughter was complete and colourful because of the words you chose. Lovely post. Lovely daughter.
Me: Olivia and C, I want you to work together to take those shapes off of the board that we just used to make the pattern.
Olivia: It’s cooperation!
Me: That’s exactly right! It is cooperation when you work together to do something.
Olivia: Yeah. And collaboration!
Yeah… she has words! Amazing words! Wonderful words! SHE is amazing and wonderful! 🙂
Oh Tiffany, your first sentence made me laugh because I have an aunt who still insists that Olivia’s test results must have been wrong because our Olivia is also so very verbal already at 5 years old. And like you, I know how amazing she is, how blessed we all are that she can tell me things like, “My ear hurts.” Or, “At school today we had applesauce for snack.” I love her word so, so much!
With one who never stopped talking, and the other who rarely spoke – I was happy for a respite from the first and a mouthful out of the second!
Their words do stay with us, and we cherish them.
I couldn’t wait for my firstborn to talk and now she won’t stop, and I sometimes wish she would. But until this post, it didn’t occur to me that some parents don’t even have to hear their kids communicate with them and it gave me pause. Thank you for this perspective, and it’s wonderful that your daughter defied the odds.
It’s true–even their cuss words are jewels. I’m so glad for you and your precious girl.
What a beautiful post!
She gets her beautiful words from you, Tiffany.
So awesome!! I have the same attitude about the curse words…at least she has those words and she uses them appropriately : ) By the way where did you get Olivia’s outfit?? SOOOOO cute!
Echoing my fellow commenters, just beautiful.
Okay, I’m a little weepy here.
And yes to ck. She gets her beautfiul words from you. From you.
Oh, Tiffany, could these words (yours and hers) be any more perfect? I have no doubt lots of time and tears went into helping her find her voice, and you, friend, made that possible for her.
Also: “It’s my brother’s fault”. Always!
P.S. I’m working my way backwards because I tried to comment on a post on my phone the other day and it didn’t work. I’m determined to say my peace.
I love that sweet girls words. She is amazing because you are amazing.
I love it Tiff!! She is just as amazing as you always describe her to be! I am so thankful for that because it makes me feel like I know you guys that much better! hhahahah!! Olivia is an angel and I love how her personality shoots out so radiantly!! You do a good job at making that apparent here on the WWW as well! I love that you hold on to the letter she gave you!! Those things are the ones that can’t be replaced nor money can buy… there for they are what makes you the richest person I know!
You are very lucky and Olivia has a way of reminding you of that. You are both amazing, she get’s it from her momma!
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