**republished from fall 2009**
I often talk to new parents (mostly Moms) of children that have been diagnosed with Cri du Chat like Olivia. That’s the whole reason I started this blog. When I first found out Olivia’ diagnosis, there was so much darkness. I couldn’t find my way out. I went on the internet and only found a couple of sites and they did not make me feel any better. They made me feel worse. I decided that day that when I found my way out of the darkness, I would have a website or something that would be positive and help bring new parents into the light. That’s my whole mission…to help parents see the light.
At the beginning it’s so much darkness. The doctors’ predictions, the amount of appointments, the comments about your baby’s cat-like cry, telling family and friends, their reactions, worry about how on Earth you are going to do this for the rest of your life.
And then there’s light. Your baby smiles, finally, and lets you know she’s in there. She will be better than you ever imagined.
Darkness comes again when you play with other kids her age and you can’t believe all that they are doing. They are sitting up! Walking! Eating table food! Babbling!! Cooing!! What is all of that?
And then she laughs. She rolls over. She grabs for you. And there’s light.
Over the years, the darkness comes less often. But sometimes, because it’s been so long, you are plunged into the dark and almost can’t handle it. It’s big things, it’s little things. Someone stares and it really bothers you that day; some rude person at the zoo asks you “what’s wrong with her?”; you can’t buy cute shoes for her because they don’t fit over her orthotics; you see a show about prom and realize you won’t get to do all of that; the thought of her living with you forever.
And then she says “Mom, I love you.” and gives you a kiss. She gets invited to a birthday party by friends…FRIENDS!! She wrestles with her brothers. She tells a joke. She smiles. And all the light floods in and the darkness fades and you can’t even remember why you felt bad in the first place.
It’s so easy to get lost in the dark. But, damn, it’s so much better and happier in the light.
You are truly a light in the darkness. Thank you for sharing your family’s ups and downs 🙂
True story! I love Olivia’s hat. I wish I could pull one off but I have fat melon that doesn’t lend itself to cute hats. I’m glad she appreciates her hat wearing abilities. I haven’t commented in a while but I’m always lurking and reading. You continue to inspire!
Yes, yes, yes! Sometimes it does feel like you’re going to drown in the darkness, but the light it so much stronger.
Olivia has the most beautiful smile!
I am so glad that I found you and the light that your family shines for so many of us. We don’t have a lot of dark days either but there are times when the light fades a bit and it’s good for me to see others farther ahead, still basking in the light, shining their own light for us to follow.
I only found your blog in the last few months, but I can’t tell you how wonderful it is to read the thoughts I have here. My Jenny is five and we have had very little contact with other families with children like J. However, we have since day one kept faith. (Even though the one family we had contact with was very discouraging.) Your blog makes me cry on almost every post, but has provided us such hope for what is to come for Jenny. Thank you for sharing, being open and honest. I love watching Olivia and dream of watching Jenny do many of the same things in the future.
My kids don’t have the same diagnosis, but I have 2 with their own issues, so I get many pieces of this, especially with my autistic 5 year old. I always feel the need to explain why he doesn’t talk or behave like most other kids his age. But he’s amazing as he is. And he’ll be fine, just like Olivia. You both will. Because you’re the light for each other. Beautiful picture, and a beautiful girl.
Love this now and loved it then. Thank you for always keeping everything in perspective.
Your Olivia is precious!
You have brought light into the world with this blog. I did not know of Cri du chat before “meeting” you and I have learned so much about it. But, more importantly, I have learned about one awesome mom who inspires me regularly to be an advocate for my child! You have brought light into my life!
You were (and still are) MY light. Our light. Thank you so much for all the good, bad, and amazing things you share with all of us. Every time Olivia does something awesome, something we’re told these kids will never be able to do, I share it with my family. We hope and dream about Cali being able to do those things too. Someday. Thank you so much!
She is amazing because you are amazing! I love all the light that’s in her smile. I’m honored and blessed that I get to watch her continue to grow and blossom!
That was beautiful! I agree, the light is so much better and happier and I find it intriguing that by nature we all want to get to that lighter and warmer place, just like a camp fire on a cold night… we walk away and then we realize it’s cold and lonely and dark and we naturally want to walk back to the fire. You have a great out look on life! And I am so glad you have a blog because we are able to be virtual BFF’s just like Ryan Gosling said ahhahahaha… what it’s totally normal! But seriously, you serve a great purpose in this world… keep writing!