Yesterday was a great day for Evan. The past couple of days he has been more "secretiony" than usualy, and for the past few nights he has been coughing in his sleep and just sounding really junky. He's even allowed us to put on his CPAP, so I know he's having a hard time breathing.
Last night, he was in rare form. Jeremy and I were playing with him at his block table, and I started shaking his maracas and being silly. His face lit up with a giant half-grin, and he just started giggling. He would sign "want, want, want" and then I would give him a maraca and he'd push it back to me (he really wanted me to shake it more for him). After a couple of rounds of this, he took one maraca and started shaking it himself. Another huge grin--I know he was thinking "Hey, I can work this myself!" Then I started tickeling him down his back with the other maraca and he would giggle some more.
Strong emotions do not let language (or lack thereof) get in the way of being expressed. Evan may not know the signs for "happy" or "funny," but he was radiating a joy that superceeded the need for words. I didn't take any pictures. Neither did Jeremy. We didn't want to break the magic of the moment by leaving to get the camera, not knowing how long it would last. Somehow I think the pictures would have been a little disappointing--the moment would have seemed flat, not as vibrantly real as it was last night.
What is CHARGE???
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
4 comments:
Cedie loved maracas.
I can feel through your post how magical the moment ws for you guys. I am happy for you 3. I wish you millions more moments like this.
Jennifer
Oh how I wished I was there to enjoy his giggles and smiles! Sounds like he was having a ball...and so were the both of you! YAY! :)
Hope he feels better soon...
Love, Amy and Max
How wonderful!!! I know the feeling of lack of language but you can still see life and expression in their faces even if they do not tell you right now what they want, need or feel.
Hugs,
Crystal and Eva
You are very right, some moments don't need words or pictures. Evan did't need words to make that moment and your words will keep the memory as a picture for us all to enjoy. Thank you Sarah and Jeremy for sharing.
Love, Grandma Key
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