Reaching Out

Typically, I am not the type of person to talk in detail about my life with strangers. I am a very outgoing person, but I don't generally trust people right off the bat, and don't want to share the personal parts of my life too in-depth. For whatever reason, after we received Wyatt's diagnosis, that sort of vanished. Almost immediately after we found out, one of my friends on Facebook told me about another of her friends, who has an infant with HLHS. I reached out to her via email, and we have now talked quite a few times about HLHS, and its effect on our families. Speaking with her has been absolutely tremendous for us, and I find myself thinking about them and her son often. We are rooting for success for them, and continuing to see her son thrive is wonderful.

Last weekend, my best friend's mom met another woman who also has an HLHS child, this one is a girl, and this family lives here in CO. I called her just the other day, and we ended up talking for an hour about HLHS, its effects, everything. Again, this is wonderful! I told her it would be great if we could come out and see them sometime, have coffee or whatever, since we're in the same state and only about an hour apart. Having these women to talk to who actually understand the thoughts I have, the worries I have....is a huge breath of fresh air. 

Just today, I was talking to someone about Wyatt and he said "Oh, they'll have your little guy cured in no time". While I wasn't upset with him for the comment, and I rather appreciate his positivity, he, like most others, just doesn't get it. He doesn't get that THERE IS NO CURE. He doesn't get that this isn't a "oh, one simple surgery, and he's going to be fine" sort of a situation. He doesn't get that I honestly don't know if there will ever be a day I am not afraid, a day I am not paranoid, a day I will be able to breathe easy. So having these two ladies to talk to is SO helpful. And hopefully, if they ever need to vent, or whine, or cry, they too know that we have open ears, and understand where they are coming from - even though they are much further along in this process than we are. 

I hope that at some point, I will be able to be helpful to a family. That at some point, someone will reach out to me, just as I have to these ladies, for support. Dealing with an HLHS diagnosis is HUGE, and it's scary, and frankly, it sucks. And I don't know how anyone could do it alone, without support. I hope to be that support to someone, someday, as if to "re-pay" the world for giving me the resources it has given me. 

A quick happy note: We took Austyn to the amusement park for the first time ever last night and he LOVED it! He had so much fun! Well.......except on the Tilt -a- Whirl, he didn't like that one so much. He did so much better than we thought he was going to do. I honestly thought he would try the first ride, freak out, and we would leave. But, we ended up staying for about 4 hours. I didn't think about how miserable it would be for me to stand for 4 hours at an amusement park, after working a full day, 6 months pregnant....so that was a bummer. But, it was all totally worth it. Austyn had a genuinely good time, and it was another of those moments where life just seemed "normal", especially for him. As we left the park, he said "I am so happy, I want to live here!"