"Wait and See"

Because of the kidz blog, people -- complete strangers -- often reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. I'm glad to be of any help I can, although it's very limited. I've been corresponding quite a bit with one mother whose experiences with her child, so far, have reminded me a lot of our experiences of first learning about Chloe's condition and all the frustrations we had during that process.

This sweet mom keeps asking me what to expect.

"Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don't think she'll need a wheelchair, do you?"

I find myself giving the response that used to make me cringe.

"You'll just have to wait and see."

Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn't want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a couple years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it's the truth. You just don't know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am just a few short years later, echoing those words I used to dread, yet heard so often.

"Wait and see." To which I add, "She will be who she is and do what she does and you will love and simply adore her."

I understand now that there are so many things that a medical professional could never have guessed about Chloe. What a joy it has been to wait and see all the things that make her -- her.

• How much she loves to snuggle.
• The way her eyes flutter and her lips turn up in a smile as she drifts off to sleep.
• The way she loves to hug and kiss everyone -- teddy bears, dolls, family, friends, strangers, cartoon characters, pictures in books. She loves to give love. She IS love.
• How special her hugs are. We help her put her arms around our necks, but then she squeezes just as hard as she can and it feels an awful lot what I imagine heaven will be like.
• How just when I'm in that heavenly hug, she mischievously starts yanking on my hair and giggling because she knows she's not supposed to pull on mommy's hair!
• How she has the tightest grip imagineable and sweaty little palms from always being fisted, and so when she gets those hands tangled in my hair, it takes an army of about 5 adults to unravel the mess. I've asked for help from strangers in stores and in parking lots one more than one occasion just so I could go on with my day.
• How before I had Chloe, if I had known about having to ask strangers for help getting my child to unclench my hair, I would have DIED at the thought. But how when it happens, it seriously makes me laugh so hard!
• How much she loves to play dress up with funny hats and silly head bands. She'll fuss, though, if I dress her up and don't show how cute she looks in the mirror.
• How much she loves girlie things -- earrings, ruffles, pretty shoes, cute clothes, pretty bows, and even make up! I put blush on her while I'm getting ready almost every morning or she'll fuss. On special occasions I let her wear eye shadow too.
• How much of a terrible sleeper she is.
• I think she's a terrible sleeper because she wants to be with people, not alone.
• How when I hear her first cry at night, I actually wake up in relief that she's alive. No matter how hard I try not to, I worry every single night that she's going to pass away.... that she won't be able to get out of a position that restricts her airway and she won't be able to cry for help. Or that we haven't checked something in her heart and it will just stop one day. It's illogical. She'll probably live a long lovely life, but if she goes to heaven even one minute before me, it will be far too soon.
• How after the fourth or fifth time she wakes up in the night, I get angry. And then I feel guilty for being angry. And then I get over all of it as soon as I'm holding Chloe because she lets me know it's okay -- to not be angry or to feel guilty, because love is all I can feel when I'm with her.
• How much I love laying in bed with her at night and studying her face in the moonlight.
• How even though she doesn't "speak" very often, she still communicates very well.
• What a silly and fun personality she is. How she goes to give me a kiss sometimes, then when I'm swooping in for it, she turns away and giggles hysterically.
• How much she loves music.
• How much MORE I love her when she's sick or hurting.
• How I actually like to smell her farts or poopy diapers. Don't think I'm a sicko, I don't actually like the scent, but I like knowing that her digestion is working that day!
• How cute it is when she pouts.
• How precious she looks in her wheelchair and how much I love her wheelchair -- the color, the freedom it gives us -- I love it.
• How excited she gets when daddy comes home.
• How she never gives up when she's trying to accomplish something.
• How hard she works just to turn her head to the left. Or to the right. Or to hold her head up. Or to swallow. And never feels sorry for herself or acts frustrated.
• How much she loves to dig crayons out of a box just to throw them on the ground and dig more crayons out and repeat.
• How much I love to hear her giggling in the other room, just having fun playing by herself.
• How much I love to watch her playing with other children and not wanting me to come get her.
• How much she loves to be the center of attention.

Wow. I didn't realize what a Pandora's box this would be. I could go on and on and on and on.

My point is this. My list has nothing to do with Chloe's milestones (or lack thereof), test scores or physical strength. It has to do with the BIG SOUL she has inside that little body. It has to do with the person she is, that no physical condition could alter, and the special lessons she teaches.


She is smart and has tested very well cognitively. She has been able to accomplish many things physically that I once didn't know would be possible. But those things don't matter much to me. Not anymore. CHLOE is all that matters and I can't "wait and see" what other beautiful, special, funny, delightful and amazing things I get to find out about her and learn from her and love about her along this unexpected yet wonderful journey.