Good

“Good!” That is what our friend Emma said to me as we sat outside after having a lovely dinner together. You see, Emma has Rett syndrome just like Claire so I didn’t really expect her to say anything to me with her words. Sure, she and Claire had been talking all night with their eyes, but this comment caught me a little off guard. I responded to her and made a big deal and both girls thought it was absolutely hilarious, there was a lot of laughing going on that night, it was indeed good. Let me back up, to give you a little more insight into just how good things have been. I will put my disclaimer out, they haven’t been rosy or easy, but they have been good. It all started with the best 4th of July of my life, hands down. We somehow managed the parade, a fun dinner of sausages and corn on the cob and tailgating for hours before the fireworks all with both of our children being pretty happy the whole time. Holidays are often hard. We find ourselves celebrating very differently than the rest of the world and often dread it. Two years ago we would have never even tried to take Claire out, she would have screamed, we would have hated ourselves for it and we knew it, so we stayed home, which we also hated but was slightly less embarrassing. I am learning that it really does get better with time. I think that is why I enjoyed our time with Emma and her family so much. Emma is 8 and she has a little sister who is 4, so they are just about 2 years ahead of us. The day before we met up I got an email from Emma’s mom. They were on a road trip style vacation and ended up 10 minutes from our home. While I was thrilled that it meant we got to meet up and hang out I must admit that I had the thought, ‘who goes on vacation with their two children, for that long and without really knowing where you are going months in advance’. It wasn’t so much a judgement but more of a ‘you can do that?’ I had no idea! When Claire was younger, it was so hard to travel that I think I just stopped dreaming about it all together. I actually remember telling a good friend that I had given up traveling all together in the same conversation that I told her about Claire’s diagnosis, that is just as far as I could see. Spending time with Emma and her family was sort of like looking a little further down the road and I honestly think it is going to slowly get easier with time. The next amazing and good thing that we had on the agenda was a birthday party for our friend Avery. She too has Rett and was turning 5. I know her mom pretty well and am so incredibly proud of her for throwing Avery such a lovely birthday party. It was a small miracle that we were able to attend. For starters, they live and hour and a half away from us and on top of that, it was a pool party, at a country club. While that doesn’t sound like a bad thing (and it really isn’t) it isn’t our thing and I knew that it might feel uncomfortable being so far out of our element. We were prepared for both of our children to start screaming within a few minutes of getting there and had a few different exit plans already worked out. In fact, we had a lovely time! We went to a real birthday party, all four of us and everyone enjoyed it. It did help that Katie was there to sit with us by the side of the pool and Chloe didn’t crack her head open as we figured would most likely happen. As the party wound down we packed up our crew and headed up to Sacramento where we would spend the night and then see Kathy, the girls favorite Aunt. By this point Jared and I were just beside ourselves with excitement that we had done so much and it had gone so well. That was dampened slightly when Chloe screamed so hard for so long that she vomited all over and again when Claire was screaming as we walked through the lobby, went up the elevator and most of the way too are room. But through this we learned that we are getting better at clearing the hurdles, that a few intense moments don’t ruin a day and that when everyone stays flexible, it is way easier to bounce back. Bounce back we did! Claire enjoyed watching motorcycle racing, we went shopping with Aunt Kathy and finished with a lovely dinner at Joe’s Crab Shack and a stroll around the old downtown area. I even got to eat my dinner, at the table, at the same time as the other adults!!! Again, something that I hadn’t even thought to dream of. So with a belly full of snow crab (amazing!) and two happy little girls, we made the drive home. I couldn’t help but think that it is seeing the families that are both two steps ahead of us and one step behind us that really help me to appreciate where we are today, what we have come through and the possibilities for our future. It is indeed good.

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