Saturday, August 11, 2012

On being normal

A good friend of mine (i know you are reading :) ) who grew up with me has recently said something interesting. Since reading my blog and hearing more about some of the issues, she says she feels bad because  she always thought of me and my family as normal. Like we had a specific walk that set us apart from others but that was pretty much it. She is only starting to realize that we have this Issue that is actually pretty serious. And she feels guilty that she wasn't more supportive and there for me with this big thing that was going on in my life.

I told her I am so HAPPY that she considered (considers) me normal. I thrive on that. While I wish my family was a little more open about our CMT and I had got things like orthotics when I was younger, I am so relieved and happy that most of my childhood was a pretty normal and happy one. Issues i had were nothing to do with my feet. Only as I got older and felt a little clumsy did it affect me a little.

Anyway, I think about this somewhat often. Normal or not normal. Disabled or Fine with just a little difficulty with some areas. Living with a Big Issue or living with a challenging but dealable issue that doesnt take over my life. This is massively Sucky or eh whats the big deal. I vascilate from feeling one way or another. I also sometimes wonder how to feel about myself, and I know how I feel about and present myself will possibly be how others perceive me too.

Bottom line is, at the end of the day, I do think I'm Normal. Is anyone really normal? :). I mean I think I'm pretty typical in many ways. I think i'm a pretty regular person with an Issue that sometimes really bothers me but often does not. I am real about how sucky CMT can be at times but I usually don't let it overwhelm me and cripple me from doing what I like. I have a Masters degree, got married, have two kids and one on the way and a house a job and friends, etc etc. I drive and shop and host BBQs and get together with friends and family and laugh and cry and watch TV and take my kids on trips and put together awesome videos and so on. Yes its harder for me to do things like chores and errands and stairs and stuff. And I get tired often (apparently many folks do) And I spend a lot of time at night just chilling because I feel I can and should relax after running around all day. And sometimes I dont cook because I cant stand on my feet so I just pop frozen pizza or waffles in the toaster oven. But is there really anything in life I am missing out on? Maybe Ice Skating? Being able to wear heels (Ad is my height so no need for that anyway)? Cant think of much else. In the Grand scheme of Life I consider myself pretty darn lucky. I have So much blessing in my life. A husband who loves and accepts me. Amazing, adorable children. A home. A decent job which I generally enjoy. More or less financial stability. Religion that gives me a sense of a higher purpose and a community of supportive people. And yes, I'll say it, health. I am a healthy young woman who is thankfully able to get around and take care of myself and my kids. I am grateful that I can conceive naturally and have had generally easy births and recoveries after. I am of decent weight and can generally check off all areas of the 'no' section in those long doctor questionairres. This disease that I have is annoying but its not life threatening or life altering. I read through some of the Quest magazines and look at some of the other diseases under the MDA umbrella and think 'wow life can be soooo much worse'.

On that note, I grapple with how often and how much I should associate with some CMTers online. I love having people that 'get me' and understand me and CMTers will understand things about me more than anyone else. I have a really great core group of CMT girls online who are overall pretty positive and lead busy and active lives. I want that and I need that and am grateful for that. And if they want to moan and vent here and there, that's cool and I need to do that too at times. But its not every single day and there is as much, or more, good stuff going on as bad. I love being able to see Nicole's humor on her blog posts, Lenka's families summer adventures, Michele's wedding pics and Melissa's kids who are full of spunk and goofy faces. And yes, we all fall and bump ourselves and thats part of life. But then we get up and move on. We live. We push through. We are, for the most part, normal. But then there are some CMT people that seem to blast CMT and the symptoms all the time. Day in, day out. Constantly whine about it. I remember the yahoo group I was part of years ago, before FB was around. It was good that others got me but it got me so down to see how many folks were depressed and hated their lives. I ended up leaving and never looked back. So too, I feel with some of the CMTers I see on FB. I actually get annoyed with some CMT friends on FB that feel they need to complain nonstop. Its like 'cmon guys, get it together and DEAL. Its not THAT bad.'

I am rereading this and I feel like I am being insensitive to others. I really dont want it to come across like that. And I know I am lucky that my CMT is not that bad and people can have it worse and maybe they truly are disabled and have the right to whine and moan. I'm sorry in advance if i hurt anyone's feelings....
I think I NEED to feel that CMT is not such a big deal for my own sake, and more importantly for my children's sake if they are afflicted. The more people that whine and moan and make themselves out to be the world's biggest pity cases, the worst others with a similar condition will feel. CMT or anything. My kids need to know that even if they have CMT they still need to follow their dreams and do whats expected of them and work hard even if its not the easiest thing to do. Giving up, throwing in the towel, sitting and crying is just not something I want to be an option. At least not more than like once a month or something....

So after all that rambling and back and forth, cheers. To us normal folks. Whether with CMT or anything else that could be life-stopping but we don't let it. We keep pushing through and enjoying life and trying to focus on all the good. Cuz, at least for me, I know that i have a lot of things to be grateful for.

Tuesday, August 7, 2012

Ahem. (dust, dust)

So its only been a quarter of a year since I last posted. Not bad. Now that summer is halfway over (boohoo!) i figured its time for a loooong awaited updated.

Summer has been great. We started off the summer with a long-overdue and much needed vacation for just Ad and me :). Unlike some other vacations that I aimed for hiking and amusement parks, I knew we needed to just chill and spend a lot of time relaxing. And relax we did. We rented a house in Connecticut for four days which was right by the lake. We spent our days watching the water, boating, swimming, BBQing, eating, watching TV, shooting fireworks, snuggling at the firepit, etc. We got up late(ish) and napped when we wanted to. No kids to disturb or bother. One of the activities was getting me a manicure and pedicure. Chinese lady thought Ad was such a nice husband cuz he was hanging around :). Our one biggish outing was gambling one night in Moheegan Sun. We had never gambled together and it was a lot of fun. Yes, there was a lot of walking, but I held on to Ad's hand and we rested when I needed it. Plus walking in an AC'ed building at night is waaay easier then shlepping around in the heat of the day outdoors. We lost a bunch of money but I ended the night winning $14 on slots so all was good in the world. All in all a really wonderful time of chilling, reconnecting and taking a break from the regular day to day life.

I knew we needed this getaway badly and one of the reasons I wanted to keep it very lowkey was because I am not in any shape to run around.....for those not in the know, CMT will be changing from Two to Three sometime this December, god willing :). So I am taking it as easy as I can with the knowledge that my time of not mommying a baby is running out. I'm smack in the middle now (21 weeks really) and I love this stage. Obviously showing and wearing maternity, feeling pretty good but getting all the help and sympathy that I really need ALL the time and enjoying the fact that I have a few months left. As it gets closer I want to hash out my thoughts on becoming a newborn mommy again.

Otherwies the summer is just flying by. I'm worknig for 6 weeks and by the time I get my kids at 3 i'm bushed. I lay down almost every day. I try to get out with them once or twice a week even just to the backyard with the sprinkler on. But some days I'm just too tired. Oh well they get what they need to out of camp. I'm being a lot less ambitious this summer. Last year I'd drive all over every Sunday going to various parks or other free events. Now I mainly stay close to home; I just cant muster up the energy for much more. And its OK I guess. I have more friends locally than I did a year ago and my sister sometimes comes to swim in a local pool so I join her. Last Sunday we went to BBQ and pool in the Poconos which was a blast. Look how big my kiddies are getting!!

Thats it for now. HOpe to update more soon -- as always I have tons on my mind that I want to share and very limited time, energy and finger interest in typing it all up. I wish y'all could just climb in my mind a bit and say 'oh, yeah, I hear that'.