Updates

Two and a half months -- NOT cool! And I have thought about posting here and there but its a whole to do to sit down and post and it overwhelms me and when I get overwhelmed I distract myself and run instead of just sitting down and DOING what needs to get done. Ask at my work, I wait to hand reports in until I get a personal email or question about when its going to be in. Last week I actually made my husband unplug my Internet so I could sit and work work work.

Anyway, i'm here now (Thanks Nic!) and not getting up until I FINISH.

So some updates.

Yak's PT wants me to get him orthotics :(. I'm not suprirsed but I'm still sad. I don't know why. I kind of feel that both my kids probably have it because they are both somewhat clumsy but something like this is more glaring. DH actually mentioned that he was pigeoned toed as a kid and his whole family has flat feet so my kids are screwed no matter what :). But on the flipside, it could be that they just have bad feet like his side, not CMT per se. Anyway, whatever it is, his feet do turn slightly and orthotics will help hopefully. They wont be AFOs just orthotics I need to be a big girl and do whats best despite the fact I want to do nothing and just hope for the best. Only problem is i'm in the process of switching insurance for the kids, so i think I should just wait till March when they have new insurance. In the meanwhile, i'll see what is out there.....maybe i'll even be brave enough to get orthotics for myself. This PT doesn't feel that Shain needs orthotics so i'm happy about that. She is tired often and I'm going to ask my ped what he thinks, if he thinks its related to having poor muscle tone or whatnot. I think all problems stem from CMT. lol.

On me, I am tired a lot. I often think of telling my boss or some coworrkers that I need a job with more sitting. Its hard to be a preschool teacher and do movement classes with them and stand outside and deal with them when they make trouble and stuff. And I do feel like I slack a lot because I am often tired and not physically energetic and strong. And I feel bad that I slack. I kinda wonder if an opportunity for sitting came up, would I grab it. part of me would in two seconds. But I wonder if i'd just slack off and waste time on the Internet. Now at least I am alive and dealing with people and stuff. Who knows, we'll take it as it comes, one day at a time.

I am extremely grateful to God and Mother Nature for giving us the most mild winter to date. It has been spring-like here and makes getting out and about much much easier. It snowed once on a Saturday and was gone by Monday, I'll totally sign up for that being the only snow this season. People don't realize how awful snow, sleet and ice is for us - I mean its dangerous and scary for everyone but people with bad feet have it way worse! My hubby actually commented that I haven't fallen in a while and that is true and good. Let it continue :).

A close family member (with CMT) is planning on getting pregnant. The couple has another, much more serious genetic issue to deal with so they are doing PGD (http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis) to rule out their child having that disease. Once they are going through the time, process and money of doing PGD it only makes sense for them to take out CMT which is also something that is able to be eliminated through PGD. I have to say, I'm a little jealous. I mean I'm super-greatful that we were able to conceive naturally and fairly easily and that we avoided the difficulty of doing IVF. I know its not all fun and games and its not something I'd want to do if I had the choice.

But there kids are definitely not going to have CMT. And that is pre-ttty neat. I hope by the time my kids are ready to have children, if they do have CMT, this type of help will be even easier and more attainable. Or CMT will have been cured :). Why not dream for the stars?

Back...

its been a while....sorry! My summer has been.....nice. I worked for most of it and thus couldnt do all that much so thats a bit of a bummer. I also dont have people here on the block that I can hang out with and chat all evening long so it wasnt anything special. In fact in a way it was a bit depressing because I know what summers CAN be if you are surrounded by friends all the time but oh well I had those days and maybe Ill have them again some time. I did swim a few times at a friends place with Shain and had a few other nice outings but it was usually just home after camp. I tried to meet some friends in the city for free concerts and stuff but the two times I made plans it rained. Boo. I also found I was tired at night and not even super interested in doing a million things.

Good thing -- the summer ended with a huge bang. The four of us went away for a week to the Jersey Shore. It was phenomenal. Hotel with mini golf, pools, beach right nearby, BBQing every night. Just awesome. We went with cousins so it was even more fun. I walked around barefoot a lot and wondered if it wuld be my last time doing so...I really need to call my Dr. and get the damn perscription and just get AFOs already. I love walking around barefoot but I said i'll give myself one more summer to enjoy the breezes on my legs and than at least TRY them! Problem is i don't really have a Dr. I went to the MDA a year ago but they claim I owe them money and i'm scared to even contact them. So just pushing it off cuz I dont know what to do and part of me doesnt want braces anyway.

Some friend's husband who is a PT asked if everything was OK with my leg. I'm so tired of hiding. I fumbled and mumbled and said something about how they are bothring me and I'm looking into getting orthotics. It was so uncomf cuz we both felt that I was hiding something and not comfortable sharing and that made him feel bad that I asked. I wish I could just say 'actually, i;m not sure if you are familiar with CMT but I actually have it'. Thats it. Just one line and goodbye. Hes a PT so he might have heard of it. No one else would have.

OK just rambling but i'm now back at work and the kiddies are both at local basement playgroups. They are both loving it and their teachers are giving glowing reports. They are happy and like to play, what more can a teacher ask for. How many more years till I get a different sort of report from a teacher?!

Hope to post more often, good to be writing again.

Its been a while...

Things have been ridiculously busy since June.

I'm a special ed preschool teacher so June means graduation, quarterlies, reports, end of year projects, etc. i also make the slideshow for the graduation (of 60+ kids). The first two years i worked a guy came and got paid for doing it. I turned to my boss after the second year and said 'I can do this'. So they gave me the job, and without tooting my horn, I did a better job for less money.

OK, Esther, we get why June was busy. But now it's mid-July. whats your excuse? So my director was leaving after 18 years and nothing was being done. A bunch of us teachers came together and decided to Just. Do. It. And i offered to make a video. Not the easy, nerdy, 'pics with music' slideshow but a full movie with interviews, pics, video clips, words, sound effects, etc. And i had never done this before. But DH got me a new gorgeous computer and the Cyberlink Director software and off I went. There were a lot of politics with what i could and couldnt' include and I spent hours and hours on it. But come the night of the dinner, it came out stunning. Everyone was crying. I ended the video with her favorite song. I stuck in kids singing along with a backround song. It was gorgeous. I wish I could upload it.

I love being able to do amazing things. No one else at work would have even offered this or had the creativity, willpower, brains or energy to video tape people, put everything together and edit it the way I could. I love the fact that I did something awesome despite my CMT (and sitting with my hand on the mouse can hurt after a while!). So thats done and i'm now recovering and slowly getting back to life.

In other CMT news, I love love love my handicapped licence. Its changing how I feel about shopping in big places. I did get my first 'why are you in a handicapped spot'. Not because they didnt believe me but because i hadnt hung the little sign up yet. It was a little embarrassing to have to answer to her that 'yes, I am handicappaed' and i felt a need to walk even clumsier when I lfet but it was fine. i dealt and moved on.

Also, awesome Bernadette has put together another trailer for her upcoming video. she asked people to send in videos of themselves but I already was in it so I dont think its necessary. A lot of people are posting stuff on the wall and spreading awareness, and one CMT friend encouraged me to do the same.

I wish I could. I want to. I want to shout it from the rooftops and let the world know that yes, I do have something a little crappy and somewhat limiting but it doesnt take away from who I am. Let people know why I'm sometimes tired and walk a little funny.

But I would get pity and I would get strange eyebrows raised and my sister would kill me because it puts a stigma on our family. Is it true that the more open you are about things, the less scary it is? I dont know. I dont know what to do. :(