We went shopping today. Our first stop was the craft store for supplies for Valentine’s Day cards that Monkey needs to bring to school this week. Duhdee put Monkey in one of the tiny carts and they roamed the store looking for the items on my list while I more methodically searched up and down the aisles.
I was able to find most of the stuff pretty quickly but I hadn’t yet decided whether to use cardstock or foam as the base of the card. I had been hoping to find pre-cut foam hearts but I couldn’t find anything in the right size so we were now wandering aimlessly.
Monkey was starting to get whiny and I was starting to feel pressured to finish so my stress level started to rise as well. We walked back to the aisle with the sheets of foam and Duhdee held them up to me. The aisle was very crowded. I started to look at the foam and was trying to pick either the red, pastel pink or the deeper pink. My heart started beating very fast and I was having a hard time concentrating. There were two other families in the aisle with kids. The kids were too loud and standing too close to me. The parents were talking loudly, to be heard over their loud kids, and also standing too close…urging the kids to just pick what they want. I wanted to just leave but all I needed to do was pick a damn color of foam and we would be done.
Duhdee encouraged me to pick the red, good…red it was. Then I needed to decide 2 or 3 sheets? I just could not make a decision. The more I tried the more stressed I felt and the more anxious I felt. Duhdee was frustrated with me because I was being so difficult. Really, it shouldn’t be that hard to pick foam for a pre-school project! I don’t even remember now what he said but I looked at him and could feel my eyes bugging out of my head and I flapped the sheets of foam at him. I was, at that moment, completely lost to the anxiety. Duhdee thought I was angry and I suppose it looked that way. I may have even snapped at him but I don’t remember that either. He left. I grabbed 3 sheets of red foam and followed.
Of course I apologized and I tried to explain. I don’t think he’s ever felt anxiety in his life though, he is just not the type. I could still feel my heart pounding and my chest felt really tight but words don’t seem to convey the feeling. We did one final loop through the store (still hoping for the pre-cut hearts), paid for our purchases, put away the cart, walked across the parking lot, put Monkey in his seat, got in the car and drove off … and my heart was still pounding. It was a solid 20 minutes before I physically felt better…then the exhaustion set in.
I couldn’t help but wonder if this was just a small dose of what Monkey deals with everyday? How he copes is beyond me. How he bounces back so fast and how he just keeps putting himself out there day after day knowing what it will be like… He’s just an amazing boy.
4 thoughts on “A small taste of FX?”
I have been thinking about this exact same topic. It blows me away that my son is so happy when daily living is often so frustrating. So excited about the FX Ring. =)
I’m really excited about the ring too! I know when we first received our diagnosis I was able to find sites about the medical side of FX but I didn’t find any families who were living with this until much later. There’s so much we can learn from one another and hopefully parents or grandparents who are out there looking for anyone who’s been there, done that will find us more easily.
I signed up for the webring as well. I have felt the same way at times. I get the feeling like I have to get out of there, though. Immediately. My husband thinks it’s a little crazy. But it is the reality I live with, and even moreso for my kids with fragile X.
Kristie, I’m not seeing your submission to the webring yet, if you’re having issues let me know! You should have received an e-mail with a link to confirm your address. It might be in your junk folder if you didn’t yet receive it.