Today was quite a day! After posting to Girl, Dislocated (my favorite blog) last night that I'd given up on our Ehlers-Danlos article getting published in the local paper I found out today that it is! Our local paper sent out a photographer to get a picture of Bug. She ended up taking a ton, some doing a puzzle with her Grandmother, some with her toy poodle, another in her room. I have no idea what she will use, or even what the article says. I don't even know what angle the article is taking since I tried to give them as many angels as possible. It doesn't even matter, I'm just pumped!

To top things off, this came on the heels of an interview with a friend of ours who is finishing her teaching Masters. She has a paper to write on either a person with a disability or a parent of a child with a disability. She had asked me if I'd like to be interviewed and of course I jumped on it. She wrote some awesome questions, and I spent over an hour answering them. The coolest part was the reason she asked me was to help us educate other people about Ehlers-Danlos Syndrome. She knew that few people had heard of it and decided that it would be great to share something different with her class and in turn help Bug and I. I just thought that was great. I am really excited about this as well since her paper is being shared with people in the educational system it could reach some incoming teachers (as well as current ones) and let them know about some of the ways we've worked accommodations out for Bug.

I have never advocated in these ways before. Depending on how it turns out I might try to do more of it. :) It's amazing how I've moved from worrying about educating myself, to educating our school, to the AEA, to working on this blog, and now have done two interviews. I would have never guessed this is the path I would be led down even a year ago. It's just my desire to help others like my daughter just keeps gaining more momentum and so far I'm still embracing it and seeing where it leads me. Of course, I could change my mind after I see the article! LOL

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!

Yet another year has just flown by! Bug is finished with second grade in a week and a half. I just can't believe that, it seems like she just started school.

Of course we are busy with end of the year stuff. I have meetings with the AEA's PT next Tuesday after school, and the OT Wednesday morning. We are supposed to talk about where Bug is at with her exercises, what we should be working on over the summer, and if she should have any extended year services. While it sounds easy, these meetings usually take awhile, and I walk away exhausted! :)

One really cool thing is our pal Jim from iCater at the University of Iowa is going to drive down next week and meet with the OT, bug and I. He is going to see if he can help our OT with technology solutions, and I am just thrilled! I am hoping that this will open the door for future communication between them (he is a wonderful resource) that will help not only Bug but other children in our district. Jim has gone above and beyond to help us try to find something for Bug to help her, and this is just another example. It just goes to show that thinking outside of the box, being resourceful, and being appreciative can go a long way!

Bug has been playing in the challenger baseball league, it is her second year. The challenger league is for children who are unable to play regular ball due to physical or mental challenges. My daughter just *loves* playing with these children and looks forward to her games. Everything is done as safely as possible. Soft balls, adult toss, heart guards (optional)... Plus each child gets to play to their ability, so many walk, or have other people help them with batting. It's such a great program, and I am thankful that Bug is able to play a sport she normally couldn't!

We are also hoping to get to go horseback riding again this summer, I have to call on that today. If anyone is interested the technical term is Hippo therapy, where horses are used to do physical therapy with kids. It's awesome, usually free or very low cost. We look forward to it each summer. :)

Finally, I did a newspaper interview the other day with our local paper on Bug and EDS. I'm hoping something comes out before the end of the month (after all, it is national Ehlers-Danlos Awareness Month). I'll post here when I know more, but I'm crossing my fingers!

I as usual have updating to do in this blog, but for now, all I want to do is share what the Mother's Day card my daughter made me in school said.

The outside read:
Mom I love you!

Inside:
And here's why! (now is where she gets to write on her own)

I love you cause you help me when I struggle and you also help me get better when I am sick. and usually you let do what I want to do you are very nice to me and my brother. you let us eat out. you let us play a game together as a family.


I just loved this card so much and had to share!

You may or may not know this, but May is National Ehlers-Danlos Awareness Month. This year I decided that it would be a great idea to support Bug by joining in the Arthritis Walk. I looked at the groups in Iowa and found that there was one walking on May 3rd, and so I decided that I was going to do it!

I talked to "Bug" and she is going to walk with me. I also have a good friend who said she would join us. At that point I thought "hey - I should form a team"! So I did - and we're inviting parents and children.

I am hopeful that we will get a nice group together, but since the walk is about 2 hours away I'm not sure. I'm going to cross my fingers though, and I've decided to hit the pavement hard to seek out donations. I am hoping that this is where living in a small town will really help, I don't think anyone else will be doing this walk. Plus, we know a ton of people and I'm hoping they will be willing to make a small donation in honor of Bug. I guess we'll see!

If you are interested in making a donation to the National Arthritis Foundation in honor of Bug and our walk, you may do so by clicking here. I know a lot of people who read this are struggling already and I don't want you to feel you have to donate. I just thought it would be silly to not at least link here in case someone can and wants to donate.

In case you are wondering why we are walking for Arthritis, it's because EDS actually is considered an arthritic condition. While I'd love to walk for EDNF and have all of the funds go directly to Ehlers-Danlos Syndrome, EDNF just isn't at that point yet. Walking with the Arthritis Foundation will support EDS as well as other Arthritic Conditions, and it will allow Bug to feel empowered as well as allow her to meet even more "kids like her". (that's what she always says) I am hoping to make shirts for our team to wear, but it will depend on how many people walk with us. (more people = more money for shirts) Bug and I will wear them, and they will mention EDS. I am hoping someone will take notice and we can attract some interest in Ehlers-Danlos while there.

Thanks for reading - and you might consider looking and seeing if there is a walk happening sometime soon in your own area. :)