Today, for the very first time ever, I was able to answer someone who didn't know when they asked the "what's wrong with your daughter" question...
I know that may sound crazy but every time until today I find my voice cracking as I say the words until I get to the point that I have to stop speaking and take a few deep breaths to clear the tears from my eyes. I try to always keep myself preoccupied when I am explaining it to someone. It's not that I don't want to talk about it but it's that I cannot look people in the face and say it. STILL. I don't know if it's harder for me to re-live as I explain how she was diagnosed and all she's been through or if it's that I can't handle the look on their face- first shock, followed by sympathy for all we've been through and then amazement by how well she is doing. Now don't get me wrong, I have NEVER had anyone react negatively or in a way that hurt my feelings- except for once.
I will never forget this and neither will my friends that were sitting right there when it happened. We still talk about it to this day. My AMAZING friends and family put together the biggest garage sale I have ever seen about two weeks before Aly was born. One of our friends made a big poster with our picture on it and explained that the fundraiser was to help us as we relocate for the birth of our daughter and a little about her condition. A woman walked up to us at the table and asked how the baby was doing (she assumed she was already born). We laughed a little and said she's doing good as I pointed at my belly where she was still safe and sound. This woman seriously looked me right in the face and said, "My friends baby had that and it was awful and he died. But good luck to you." and walked away. We all seriously sat shell shocked that she would say that me and I think all thinking "is she right?" We had no idea.
Ironically, I didn't cry then. But when people ask me with genuine concern and interest... it gets me every time.
So why not today? Why not anymore? Oddly enough, as I was sitting at my desk working, it hit me that I didn't cry. AND THAT MADE ME CRY. It was such a free feeling. I feel like the fear is losing it's grip on me. It's still there and part of it always will be holding tight to a corner of my heart that it pulls at when I have "those moments" but I am winning the battle. I can finally say that. I remember when I was pregnant reading a blog of a mom whose daughter was about 1 or so and she wrote that even on the best most normal days she always thought of her daughters heart a dozen times a day at least and I remember feeling so deflated reading that. And then I lived that. And then, a few weeks ago she updated that her daughter was doing well (she's 3 now) and that days go by that she doesn't even think about her heart other than at medication times. That brought me full circle as I am following in her footsteps. I'm not yet to the point where I don't think about it every day but it's definitely not every second of every day anymore. I didn't know this kind of normal life was possible for us- but it is, and we're doing it!
I am getting stronger. Every day. I have rode the craziest roller coaster for the last two and half years- I've had the highest of high and lowest of lows and I finally feel.....settled. Content. Happy. NORMAL.
So maybe next time someone asks me about Aly, I can do it again. And maybe not even cry about it later. ;)
I promise there will be a Christmas post of Aly in all her cuteness coming soon! Mommy just needed a journal-her-feelings blog post today. :)
Oh and P.S.- I posted all this about how great our life is and posted it before I even realized that Aly has a cardiology check up next week. Old me would NEVER have "counted my chickens before they hatched" (so to speak) but new STRONGER ME..... is still gonna ask you to say a quick prayer and keep Aly in your thoughts next week for a stellar check up. SIGH.. I'm getting there- I'm a work in progress, right? ;)