Today started out as a great day, Bug was going to go window shopping with Grandma and I to show us what she was wanting for her birthday. It's not for a couple more weeks, but her Grandparents wanted to celebrate with her while we are here in town. We started at Old Navy, and then needed to make a decision on lunch. Since it was Bugs special day, we asked her where she wanted to go. She just couldn't decide, and kept saying things like "normally I'd want Panera, but I can't have my favorite soup" and "I love Frappuccino's, but they have milk". Finally Grandma had a great idea to go to the Rainforest Cafe (Bug had never been there) and so we just went. Although she enjoyed the animals, she wasn't her normal cheerful self. Being that it was in the mall, we stopped in a couple of stores right next to it and then started walking to the main area of the mall. Bug just wasn't happy, and kept lagging behind. My Mom and I wanted to stop in a store and browse clothes for a couple of minutes, and she didn't want to. I made her come and stand inside, while I had a quick look. Normally I would have skipped the store, but I have to attend a business party on Saturday with my husband and didn't pack anything to wear. (duh) Anyway...
We continued about three more stores down, and stopped to get a directory. Bug sat next to me on a bench, and my Mom went to sit next to her. Bug got up and sat on the other side of me, which apparently offended Grandma. At that point Grandma announced that it was obvious that Bug wasn't having fun, and she wasn't having fun, so we should just leave. Bug said she didn't want to go home, but that's what we did.
Grandma gave Bug a lecture in the car about how it was obvious Bug was upset with her, and that was fine, but that we shouldn't be shopping if we were unhappy and when she was happy we could go back out. I just didn't say anything and neither did Bug. When we got back she went down to play with her brother, and I slept for a half hour. (escaping reality? LOL)
While I understand where my Mother was coming from, I also think I understand Bug. This was our first shopping trip out since going dairy-free, and she was upset because the things we traditionally do on those trips she couldn't. We make a big production about going to Iowa City to counter the fact it's to see Dr's. So we go shopping, to Panera (for broccoli cheese soup), and get a Frappuccino. We always do it. She looks forward to it, and it's taken us a long time to even find a place she would eat. (she won't eat so many foods) Being a vegetarian in a meat eaters world, I think I know how she felt. There are times I get grumpy because we are going out and I know I won't get to enjoy where we're going. It's especially upsetting when you don't get to go out often.
What stunk was how it all played out. In some ways I felt bad because I wasn't prepared for this. I didn't think about it ahead of time and have a plan. I could have just picked somewhere and not even asked her, which I do think would have helped. But - I'm still getting used to this too. Also, I do wish my Mom had dealt a little better. She just gave-up, and assumed that Bug was bitter that we went into a store she didn't want to go into. While there might be some truth in that, it wasn't the main reason. At least I don't think so.
Of course, I could be wrong. Every kid has their moments. I guess that's why I didn't say anything when Grandma had her lecture. I just let it play out. The truth of the matter is that it really doesn't matter what I think. Other people are going to see what they want to see or are used to seeing. Unfortunately, this means that Bug might get lots of lectures that she might not really need. So am I doing her a favor by letting it play out (safely) now so she knows how to cope, or am I letting her down by not sticking up for her? Grandma wasn't mean-spirited, but what she said was hard hitting on its own.
What a fine line it is balancing between living life as a "normal" person and protecting my daughter because she isn't "normal". While food was the problem today, tomorrow it might be an invisible ache, or just general fatigue. I know Bug is in the process of learning a big life lesson right now, that life isn't fair. That she is different. And that while sometimes it is ok to feel sorry for yourself, you then have a choice to make - to hide in a corner and let life pass you by or to put your chin-up and live for all of the other wonderful things God has given you. I can only hope and pray that she will choose to fight and see the good, and that I can be strong enough to set that example for her.
So, tonight we talked about making choices to move on after we feel bad. I think she understood and I hope she'll be able to talk to me about things like this in the future instead of just getting grumpy. And most importantly, I hope that she knows that above all else I love her and am on her side, even on the "bad" days. :)
I thought I'd pop in and give a small update since it's been a couple of weeks. Things are moving along nicely for summer. We've been practicing our OT stuff, hitting the pool, and having lots of family time. We've rented several games for the Wii, the interactive kind. Bug really enjoyed Carnival Games, and Playground Sports. I just have to say again how nice it is for her to be able to "play" games that she can't play in real life!
Currently we are up in the Chicago suburbs visiting her Grandparents. Last night we all went to see the Beach Boys at an outdoor concert. It was so nice, because we had lawn seats (meaning you show-up, claim a section of lawn, and put our your chairs, table, picnic table, etc) so Bug could stretch out and move as she pleased. I cannot imagine her being comfortable in normal seating, but she had a great time and was happy the whole 4 hours we spent there. I'm sure it helped that the kids who live next door to Grandma were in the spot next to us! :)
While we're here we are also planning to hit Milwaukee for an afternoon, and then head into Chicago another day to see the musical Willie Waunka and the Chocolate Factory. Combine that with the massive amount of shopping we've been doing and it makes for one fun trip!
We got our allergy appointments rescheduled at the University of Iowa. We were supposed to see several people in the middle of the flood. I still need to make a couple more appointments but I'm excited to have allergy scheduled because Bug is asking for food allergy tests. She's been off of dairy most of the summer, and it has really helped with the stomach aches. The thing is, she's not getting lower stomach cramps, loose stools, or gas when she does have dairy. But she gets horrible stomach pain. Allergy? Lactose intolerance? Who knows... Nothing is ever clear cut and "by the book" around here. But she wants the allergy tests to see if she really can't have milk or not, so I'm jumping on it. I'm crossing my fingers she actually goes through with it when we get there. If she does, not only do I hope it provides some insight as to why nothing seems to help her stomach, but I also hope it is another leap forward with her anxiety. I sure do hate all of these little "unknown" pieces of Ehlers-Danlos Syndrome!
Another thing going on is she's had shoulder problems twice in the last two weeks. Once she was sitting on the shoulder and moved slightly, causing horrible pain/discomfort. She wouldn't even allow me to touch her to try to help. This morning she woke-up with something similar going on. It's been about an hour now and she still is hurting. Right now she's trying heat on it and she says it helps a little. Of course I forgot the childrens Advil. I think we'll have to run out and get some in a bit. I packed everything BUT advil. Figures!
I know I'm forgetting stuff, but I'm signing off and spending time with my family. I'll check-in later!