I took Ana (Emily’s sister) to a birthday party today, and found myself explaining the entire first year of Emily’s life to the birthday girl’s father. I summarized six months of molding, two surgeries, six weeks of arm restraints, chronic ear infections, delayed speech and sleep issues as I watched Ana tumble around with her friends. He nodded sympathetically and there was something in his eyes that I’d seen before – a look of fear and sympathy that is a window into the very heart of what it means to be a parent. It’s a reflection of what I know goes through my own mind when I read about a child with cancer, or a toddler who drowned in a swimming pool or a 5-year-old that was snatched from her front yard. When I see that look I think to myself, “oh god, I am the horror story!”

It is difficult for me to see that look of fear and empathy in another parent’s eyes and successfully communicate that everything is ok . Things are really ok! In expressing this to a parent who hasn’t had to deal with an issue as monumental as a child in trouble (whether it’s via illness, a major birth defect, or any number of terrifying “what-if’s” that haunt our brains in the wee hours of the night), it’s just not possible to express that something like this is managable.

I’m not saying it’s easy. But, the thing is, my life is a thousand, million times better for having Emily in it. She’s made me see how strong I can be. She’s shown me the amazing resilience of babies. She’s proof that beauty comes in all kinds of packages. Emily has removed my blinders – blinders that let me believe that “nothing bad can happen” which may be an optimistic outlook, but it also places importance on trivial things that make it easy to overlook what’s realy important (like healthy children).

I didn’t give that father the URL to the blog because I wasn’t sure he was ready to see Emily’s face the way it once was. I’m not sure I would’ve been ready to see it a few years ago when my biggest worries were getting Ana to stop sucking on her finger and start using the potty. Things can change so much in a few years. I’m extremely happy to be where I am today. I think part of it is just the relief in getting past the last two years and seeing Emily thrive throughout everything she’s been through.

I think I’m more amazed with life than I ever could’ve been if I hadn’t been forced to enter the world of sick kids. Not that I don’t find myself wishing I could make it all better for Emily and erase her scars forever. Still, I have come to a point of acceptance and that’s brought me a lot of peace. That’s why I found myself comforting the birthday girl’s dad. Because it really is…ok.

We took the girls to Chuckie Cheese today. It was the first time Emily ever went there and Ana hadn’t been there since she was two (about three years ago). So we were all sort of blinking and cringing from the noise at first, but they had fun.

Emily has a ride with Barney. She lapsed into this dazed stare quite a bit – probably a defense mechanism to protect her brain from the explosion of primary colors.

This was Emily’s favorite place – the top of the slide. She didn’t need any help. She just kept sliding and climbing back up to slide again.

Ana joined Emily on the slide at the end of the day. She’d go down first then wait at the bottom to “catch” Emily and give her a hug.

Here’s Ana’s reaction when we told her we were going to Chuckie Cheese.

Emily’s annual cleft team visit (it’s called a “cleft conference”) was scheduled for yesterday at NYU’s Institute of Reconstructive Plastic Surgery. Unfortunately, we never made it there because there was a major accident en route and we got stuck on the NYS Thruway for about two hours. I think we went a total of 4 miles during that time and ended up missing the appointment. Ah well.

I’m feeling an odd mixture of excitement and dread with this annual cleft conference. It’s been almost a year since Emily’s last surgery and we’re finally feeling like a normal family. I described the feeling recently to someone who has three healthy children. It’s sort of like the entire family is coming out of a coma. We were so focused on Emily’s care and subsequent recoveries and then of getting her “caught up” with things like walking, eating and sleeping normally that we’ve just begun to collectively sit up, rub our eyes and join the rest of the world. That’s why this team appointment is a bit bittersweet – because it’s a reminder of the past, and of the uncertain future.

Still, I can’t wait to see the team, ask some questions and try to get an idea of what’s in store for Emily over the next few years. The appointment will probably be at the end of April.

Who needs summer? We just pretend it’s sunny and stick the kid in her swing. I tried to tell her to stop shivering while I took the picture, but she wouldn’t cooperate.

Today was the first time Emily ever braved the snow – at nearly two years old, she’s a bit of a late winter bloomer. I think she’s suspicious of the white stuff because it makes her unsteady on her feet and she’s a really cautious walker. It was nice to see her outside enjoying the winter weather a bit. I needed to be right by her side holding her hand for the most part or she’d start to panic. Other firsts for Emily – she walked down the stairs today (with much help from me) rather than being carried. She’s been able to go up them for quite some time, but going down was not something she seemed inclined to try. She seems to be hitting some speech and cognitive milestones and is really chatty and communicative. She’s still very hard to understand, but big sister Ana has been translating for her.

What a good segue into a shot of the two of them in the snow. Ana’s legs seemed mighty long compared to poor little Emily who was baffled with the white stuff that came all the way up to her knees.