I knew it would, but I didn't know when. I also didn't know it would be so obvious, or how it is that I under-estimated Bug so much. We've spent so much time teaching her to advocate for herself, how on earth did it never cross my mind that she would tell me when the time was right?

Tonight, Bug asked me to have to school get her a laptop so she could either type or speak (Dragon Naturally Speaking) to a computer. I swear, I almost had to pick my jaw up off of the floor. I asked her why, and she told me that it was so much easier to do her work and more comfortable, faster too. I asked her if she wanted to talk to her teacher, or if I should, or if we should do it together. She said together, because while she agreed with me that she should talk with her about it because she can explain what she wants/needs and how she feels better than I can, she said that sometimes she feels shy about talking. For the second time in a five minute period I found myself totally impressed and floored by my daughter. Why? Because it is HUGE that she recognized that she can feel shy/uncomfortable talking about these things, and, even bigger, that she could explain to me that was how she was feeling. WOWOWOWOWOW!

So, I left a message for her teacher and hope to set something up quickly. I know how the "system" works, and I know it's unlikely we can get what we need fast. However, maybe we can get the process started, and, in the meantime set-up something temporary.

Huge news. Major maturity growth, and self-expression. I am just so pleased and happy with my girl.

More before long, genetics appointment next week, and hopefully a computer update!

This past weekend my husband and I got into a bit of a disagreement. Bug was invited to a sleepover birthday party, and they decided the night before that they wanted to take the girls bowling as well. Obviously, this was not a good choice for her, as holding a bowling ball is 1) Too heavy and 2) Not good for her fingers 3) I'm not even sure the splints would fit in a ball without getting stuck! So, I called the Mom and told her I wasn't sure Bug would attend that part of the party and that maybe she could meet the girls after. She was okay with that but said she was welcome if she wanted to sit and visit with the other kids. I told her I'd leave it up to my daughter.

I asked my daughter and to my surprise she wanted to just sit and visit and be a part of the group even though she couldn't participate. As an adult, I couldn't see the fun in that and thought surely it would be upsetting, but she was fine with it. I decided that it was her choice, and to let her attend and watch. Well, my husband was not too happy with that, and thought it was a very bad idea, sure that it would be upsetting to her and a bad experience. I told him that I felt strongly that it was Bug's choice, and that she would have to make choices like this her whole life. It's up to her if she wants to miss out or if she wants to participate the best she can, even if it's just watching. We can't make that choice for her, and the sooner she gets used to making it the better. I feel like if she can find a way to make things work for her and accept her differences now it will be much easier as she grows up more. We shouldn't push our issues on her - if it doesn't depress or upset her then we should be happy for her. He gave in, and Bug went bowling.

I wondered how it would go during the 2 hours they were supposed to be out. I'd be lying if I didn't admit I was a bit nervous that she would decide it was upsetting and feel left out. So, I was shocked when I got a phone call from her all excited (almost to the point where I couldn't understand her) telling me she had gone bowling. I said "you what?" sure I had heard wrong, dread filling my chest. "I went Bowling" she happily replied. "I got to bowl the ball and everything!" She went on to tell me "they had a machine that rolled the ball for me so that I didn't have to hold the ball at all!!!"

She had a *wonderful* time - and we looked up online what she used to bowl. Apparently there is this assistive device that allows people who can't hold a bowling ball to bowl, and this particular bowling alley had one. I had no idea such a thing existed, I have never heard of it nor had my friend whose daughter had the party. If we hadn't let Bug make her own choice about attending the bowling part of the party she would have missed a lot of fun, we wouldn't have learned about this tool, and we wouldn't have opened this new door!

My point is this. We cannot stop living because of Ehlers-Danlos Syndrome. We shouldn't stop our children from living either. Nor should we dump our own personal issues and hang-ups on to them. Just because I wouldn't be comfortable at a party where I couldn't do the main activity doesn't mean my daughter wouldn't love it. :) Sometimes it's hard to step back and allow her to make those choices, knowing she just as easily could have gone and come home feeling sad. But, if you don't allow the choice, you never know what the outcome would have been. You also don't know what you might learn.

Once again it was someone who wasn't a Dr, wasn't a teacher, wasn't anything but a friend who taught us a unique way to do an activity that normally one with Ehlers-Danlos Syndrome shouldn't be doing. There have been so many people like this who have touched and enriched my daughter's life, and I'm sure there will be many more. If you take the time to look around you, I suspect you will find people like this in your life too!

If you are interested in what Bug used to bowl, it is called a bowling ball ramp and looks similar to the picture on the right. The picture is from Access to Recreation and you can purchase this at their website by clicking here.

Obviously you will want to lift the ball for your child, as it does still need to get onto the ramp. :) But they can still feel like they are doing the bowling and aiming the ball themselves, which is awesome!

Haha - I know, "Wiiiiii" sounds like a silly title for a post! However, that's what this is about (in part). The Wii.

I don't think I've taken the time to tell you guys about how much we love our Wii. Besides the fact that it is so much better than any other game system just because it makes kids move - it has opened up so many doors for Bug that were not open to her before.

For example, tonight we spent family time bowling. Obviously, bowling probably isn't something that a child with EDS should be doing. After all, if you aren't supposed to carry books around school, odds are the Dr.'s would frown upon hurling an 8 lb bowling ball around. But with the Wii, we can bowl safely in our own living room. I cannot explain how happy this made Bug the first time she did it. And she still loves it, months later.

On the Wii she is also able to box, play tennis and baseball. There are lots of other fun games she plays on it too (laser hockey, fishing, ping pong, etc) but the first ones are things that are not safe in real life. It is priceless to her to have a way to play them - and be able to play them on a level playing field no less.

This afternoon I was doing some work and watching her play "fishing". All of a sudden I noticed she was standing on her Bosi Ball. I could not believe it!!! If you have ever tried to stand on one you'll know it isn't easy to keep your balance on it while just standing still, let alone while throwing a fishing rod! LOL She also played several other interactive sports games standing on it. WOW! This is a girl who two years ago didn't have enough balance to walk up or down stairs with one foot, then the other. I cannot wait to tell her PT about this - I am sure she will be so proud!

So - if you do not have a Wii, and have EDS and feel left out of sports, consider getting one. It is one of the best investments that we have made!!!!!!!