Saturday, March 16, 2013

While I was gone...

Our kids were such good kids while I was in DC. Marc said time just flew by because of all the involvement with the kids.

I had all the meals ready in the freezer, meds filled, school and buses informed, doctor and dentist appointments rescheduled and a calendar all drawn out for Sister. So all Marc had to do was take care of the kids and he did a great job--he really is an amazing dad!

In fact, I was a bit jealous that he seemed to have such an easy time with it. I need as much help as I can get and still don't do all that I need to do. I had to keep reminding myself that I had most of the work done for him so that it wouldn't be as hard... so that is how I comfort myself when I think I can't quite hack it (smile).

I missed the kids.

It's so amazing how something so hard can be so dear to you. You know what I mean? Like after someone is not in your life anymore it is the little things that you miss.

It really missed hearing Sister's exclamations at every site we saw that was big or amazing. I love how excited she gets over the littlest things too, like just giving one of her favorite people a big hug. She does like this, stiff, happy, goody dance thing and it makes me giggle. I also really missed hearing all her mispronounced words. She has so many good ones and I never remember to write them down. I really need to make that a priority because stories like this one about the persimmon are always fun to illustrate.

Baby's squeezes were missed entirely, especially when my hives flared up the last night I was in DC. (Oh, did I tell you about my hives? Ya, that medication I started that I thought was a "good-to-go" wasn't so much. I got some pretty awesome hives, but luckily nothing as serious as it could have been, anyway...) I needed her love to give me comfort. She gives the best nose-to-nose and cheek-to-cheek hugs in the whole wide world and when she adds in some spit with the experience it just seals the deal! Ha!

Brother... you know it's funny... his smart alec remarks were actually missed a little bit. He has some pretty funny ones, like, "You're acting just like your mother!" or "Oh, I don't think so, missy!" It really made me miss him when I would hear some of the other young adults who were there self-advocating for FXS teasing others and joking around.

I saw a kid at the grocery store today while I was stock piling on apples, clementines (the new favorite) and chicken. He acted and looked just like he had Fragile X. I wanted to run right over and tell his dad, "Hey, my kids have Fragile X too!" I really do wish that I could do that and know it wouldn't offend anyone. But, I couldn't help but smile when he was sharing his opinion on ice cream with his older sister, he sounded just like my extremely opinionated FX son and I caught myself chuckling a little. I didn't want the dad to think that I was being insensitive or laughing at his son, so I piped up with a smile and said, "He reminds me so much of my son, the way he looks and acts and I couldn't help but smile." A few friendly words were exchanged and I still walked away wondering if this parent had ever even heard of Fragile X Syndrome.

Anyway, I don't know why, exactly I went off on that tangent, but there it is.

So with my final thoughts I will say this, Fragile X is constantly on my mind, 24-7, every second of each day. If I am not around it, I am thinking about it, if I am not thinking about it, I am seeing it, if I am not seeing it, I am hearing about it, if I am not hearing about it then I be at home living it. Maybe that's part of the reason I don't know how I would feel if there were a cure for Fragile X... I wouldn't know what to do with my life...


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