Why dont I ever post?

I get into a rut. Of not posting. not posting leads to more nonposting.

So its been about two months and my blog is sitting and getting dusty. Once I start posting again, it feels so good and right. But I need to actually sit down, sign in, click on new post and get to it.

Another thing. the honest truth is I haven't really been thinking about CMT much. Basically when I think a lot about CMT, theres a good chance i'm going to feel down. And I don;t like feeling down. I like feeling happy. I don;t know how people devote their whole lives to CMT and make movies about it and write stories and advocate and stuff. While I so admire them and think its great, I think it would add this depressing feel to my life if CMT was such a big part of my daily life. But at this point, I am busy with work, friends, side jobs, keeing the home and oh-btw-two kids :). So I don't think so much about CMT so I don't post. I should post anyway but i don't.

Thank God I am feeling pretty good, each year that the kids get a little older and more independant I thinnk it helps with my overall stamina and energy level. Like I don't need to carry either of the kids in our out of the house or up / down the stairs. Thats pretty big for me not to have to do. I also dont need to put them in the car, they go in themsleves and even partially strap themselves in. Thankfully I haven't fallen in a long time and for now I'm going to stay AFO-less even though i do want to get it at some point. (really stupid reason why i dont haev AFOs, I just don't have a dr. to prescribe them). Anyway for now i;m ok without them. I use my handicapped card plenty and am grateful i have it.

I am not as active in the classroom as I'd like to be but I don't make myself crazy to do more. If i can get up and do stuff once or twice a week its enough, otherwise i;m mainly sitting. recently my school sent me to a 'Move to Improve' workshop which I should not have skipped. It was teaching good and fun movement games for the kids. I should have realized it would be too much but I like days off so I went. It was a LOT of standing on my feet and moving around. The moving around is not hard, the standing on my feet was. First I tried standing near a heater and leaning on it, than I took a chair and sat on the top. My coworker (who doesnt know my situation) asked if I was ok, she thought I was diabetic and has a sugar low or s/t :). I explained the situatoin breifly and shes like 'if you want to leave in the middle, Ill take your certificate'. I;m really glad I stuck it out, challenging as it was, its good to know that it is still physcilly possible.

Hope to post more soon.....

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.

Nothing like comin' home

Today I woke up late (about 9ish) and it was pouring rain out. Theres something a bit cozy about being warm inside on a day you dont have to go to work and just lounging around. But I also knew that coziness would lead way to boredom and listlessness as the day went on. Unfortunately I don't really have close friends in my area - I have a lot of people I am friendly with and hope to become closer to but very few people I can crash by for hours with the kids and be totally myself. The very thought of texting one mom after another to ask if we could come play was depressing. We had also had a quiet shabbos with just our family which was definitely relaxing but I was craving family or very close friends. I called my sister who had been at my mom for shabbos (my brother and his wife were also there but tehres a limit to how many can sleep in a 3 BR city apartment so I didnt even bother asking if we could come). My sister tells me that she and her husband are going on a mini-vacation and the kids are still at my mom as is my brother and his wife. (were all very last minute). Just calling my mom and speaking to my SIL and hearing the noise in the background made the idea of driving there very tempting. I was tired and it was pouring and I'd have to drive myself and find parking which can be a 40 minute task sometime. But I decided I wanted to go and we made plans that if the rain let up we'd go somewhere, otherwise we'd just all hang out at Moms.

Its always a trip to get everyone to the car, especially in the rain. I'm constantly praying that no one is going to fall on the way down (thankfully we only have 5 steps). But amazingly we got into the car and on our way (stopped for Gas) about ten to twelve. Yak fell asleep right away but Shain had fun talking with me while the music was playing and we were driving. She even said "Bubby (Grandma) lives in the city, right". LOL! The drive was rainy but there was no traffic and I got off the Willy bridge about 12:25. Great timing, especially as it was raining and the trip can take 1.5 hours plus in traffic. I was going to call to ask someone to help get the kids so I could loook for parking but decided to try to find one myself. At this point Shain was gettnig sleepy but I kept pointing things out to her so she wouldn't fall asleep. Another amazing thing happened and as I rounded the corner of my moms apt, a parking space was just sitting there. Score! I got the stroller and kids out and we managed to get into the building and upstairs all on my own. I always feel like I desrve a medal when I maneuver kids, double stroller and bags through two doors, an elevator, hallway, etc.

Anyway, it was the best decision to come. My nieces are adorable (11, 10 and 8) and my nephews love my kids (6 and 3). the girls put on music and we all started doing aerobics and dancing. We read books, chatted about my sisters upcoming party and ate a nice lunch together. At one point my mom put on a video for the 5 youngest and the 4 adults and my big nieces played Taboo. We just laughed a ton at some of the clue and guessing going on. At the end of the day my mom put up dinner and there's nothing like eating my moms chicken soup especially on a rainy day. I love going home. its so familiar and warm and part of my childhood and past and who I am today. And of course there's my mom and other family memebrs who love me just the way I am if they are there as well. I hope that one day I'll feel similarly about my current neighbrhood but its good to know I can throw the kids in the car and drive less than an hour to get there whenever I want. I hope to spend a few days there on my day off.

I left mom about 7 and texted DH that i'm on my way. Althogh he was hoping to be tehre for me, he had an emergency job that he had to take care of. I arrived home with two sleeping children and no sign of DH's car in the driveway. Not OK. Usually i'm exhausted when I take the kids somewhere on Sunday and knowing he's there waiting with his big strong arms to carry everything in is such a relief. Now its just me and kids are fast asleep. At least the rain had tapered off. What am I supposed to do. Carry each sleeping 30+ pound kid inside and upstairs to their bedrooms? Help. It hit me that if I was ever, God forbid, a single mom i'd have to live only in an apartment or a ranch style house with no stairs.

There's a time and place that I tell my myself 'CMT, you need to bug off. I can do this even if its a little overwhelming. Shrug off the nerves and self-pity and do what you need to do. Your kids are relying on you and you can't let some weak muscle nerve endings or whatever stop you from doing what needs to get done.' I then backed the car right onto the pathway to my home as far as it could go. I ran in, put down diaper bag, pocket book and put a stopper in the door. And one by one, I gently opened the car seats and carried them inside. Yay SuperMama! Don't worry I didnt even entertain the though of carrying them to their rooms. I placed each one of them on one of our comfy couches and gave them their blankies. Shain woke up as she was being transferred and let out a whimper but Yak barely moved. When they were comfy, I went back out and backed the car out and parked it.

So thats where my babies are right now snugly asleep on the couch, waiting for Daddy to bring them up. I am gonig to go down in a minute and put a diaper on Shain, hopefully its not too late....I feel all warm and mushy about my day and hopeful that i'm creating memoreis for my children that will stay with them for a lifetime. Good night :)

Yak and Shain

So Yak's PT wants him to wear shoes all the time with insoles. :(. I just bought cute sandals at a real shoe place. But his feet are turning. Joy oh joy. He was my early mover and walker and I was hopeful his feet would be spared but alas it looks like its not the case. I did notice his feet are actually turning in, not out like mine do. But anyway I'm trying to follow her isntructions. i'm a very free-spirited barefoot run around the place person so I dont know if I can have him wearing them all day until he goes to bed but I'm trying to make sure they are on most of the time. I hope it helps, she thinks it can. I'm so not at the place of runnign to the MDA to see if they have CMT and need orthotics but I hope that my kids won't miss out becasue of that. I will follow my PT's recommendations seriously and I'm guessing both kids will be getting PT (and possibly OT) for the next buncha years. The good news is the PT is very happy with how Shain's progress is and she's been doing great with stairs and running. She's such a little free spirit like me and her status quo way of moving around is merrily skipping. I just pray she doesnt fall when shes doing that on the pavement and much more often than not she doesn't. But it does make both our spirits temporarily plummet when she goes kaboom when all she wanted was to be a happy little girl.

BTW, Yak also started with speech and special instruction because he's almost 2 1/2 and doesnt talk that much. He's shown a lot of improvement since he started and also since he started a little day camp with 6 other little 2 year olds. He's so much happier than when he just went to a babysitter - here he swims and colors and he really enjoys it! Plus my friend runs it so that is great. I'm not super concerned because Shain was also delayed and now she doesnt stop blabbing and has a super memory. My kids are adorable btw. I can't stop kissing them. Shain's best friend came for the whole weekend (he's a boy) and they played beautifully together. They built a whole city with our Legos and sang together in a band. Poor Yak was a little left out but he didnt seem to mind.

Have a great week!

The past few Friday nights have worked out really well. DH has been pretty helpful and I've been more upbeat and smiley when sitting at the table.

Friday night

So I have a sort-of-dilemma.

Every Friday night - Saturday night is our Sabbath, Shabbat, Shabbos whatever you want to call it. Its a day of rest and and we basically refrain from all electronic stuff and work and we hang out with family, eat, read, pray and SLEEP! So for those not familiar with what Shabbos entails, imagine a small Thanksgiving meal every Friday night and Saturday afternoon. There's lots to prepare beforehand, including cooking 5-course meals, cleaning the home, bathing everyone, preparing for guests which often come, etc. Its fun and very enjoyable, but yes, hard work!

So here's the dilemma. Lately, or I should say, almost always, come Friday eve, everything is finally ready and I light my candles and just collapse. The whole week of working and taking care of kids coupled with the extra prep work on Friday finally catches up and knowing that i'm finally at my deadline puts me into a very tired-lazy-just-wanna-sit-on-my-couch-with-my-feet-up mood. But I usually dont have much time to relax cuz I still have to take care of kids and set the table up so when my husband comes home from synagogue, all is ready. And basically, the whole meal, I'm somewhat 'blah'. I'll eat and chat and laugh but I'm so not in the mood of serving a big meal. Taking care of the kids and putting them in bed, constantly getting up and down to serve and clear off and standing on my feet to serve things such as soup and chicken feel like major labor to get through. Plus, i'm usually relaxing and surfing at this time of night so it's physically hard all around. But the dilemma is not just how to make this easier. Here it goes:

My wonderful husband has seen that Friday nights are hard for me and it bothers him. He wants me to be energetic and rested and happy and I totally get why. So he's basically taken over all cooking and cleaning the past number of weeks, which is amazing. I barely have to do anything in that department. Great. So whats the issue? The issue is...come Friday night and I'm still tired... even if I didnt do any of the cooking or cleaning. Its not like i have my feet up all Friday, even without cooking/cleaning, I'm still donig my share of getting things ready, bathing the kids - including washing hair, always fun and in general going up and down the stairs more often than usual. Truth is, I think that many people are tired Friday night even if they dont have kids or work full time. But I'm sure my CMT adds to the fatigue. So it frustrates my husband that even with him taking so much of my shoulders, I'm still not alive and energetic. And I dont know what to do about it.

Just as an aside - DH is not into me making CMT excuses. IN general this is actually a very good thing because I don't WANT to be someone who lazes around and does nothing because of a neurolgical disorder. I want to accomplish whatever I can and push myself to the limit. But what is my limit? When I try to explain that I get fatigued easier than many others, he claims I am 'pulling the CMT card'. Might be true. Prob not completely true. I probably could get energized if I was giong to - say - an American Idol show. But even then I tire easily.

Maybe I should relax more on Friday - like sleep instead of surfing when I come home from work. Maybe its a simple soloution like using a better chair at the meal which I can get up and down from easier. Maybe I should drink a coffee right before lighting candles. Or maybe I should just tell him that I might not be energetic no matter what I or he does and he should try to accept that about me.

Thoughts? Advice?

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. :(

Officially handicapped :)

At least according to the NYC DMV, I have on of these nifty little things stored safely in my glove department. Its a drop strange but also a relief. So far I used it on Friday when I took the kids to CVS and Stop & Shop. Amazingly the three closest spots were taken! But i parked in teh next row. I looked around a drop as I got out, wondering if people would look at me funny but no one seemed to notice or care. The question is what would happen if a friend or acquaintance saw it. Truthfully, i'm getting better at just being open about the CMT so its probably not the end of the world.

After getting what we needed, I was really in luck. It was POURING rain. Imagine if i had to walk further! Its enough that i'm running (well, no no really but walking quickly anyway) in my crocs which are so slippery when its raining, trying to shield my two kids who melt in the rian and get the groceries in. Score one for a handicapped spot! I also like the fact that you get to put it away when you are not using it, makes it less obvious for when i just want to fit in.

In other news I have been shirking on posting because I am crazy busy now!! Mainly work related activities -- remember I work in a school and its June, which means end-of-year stuff, slideshows, goodbye parties, etc. Thankfully as exhausting as it is, its also so exhilitriating to feel so good at what i do and so needed by those who are benefiting from my time and energy. Hope to share more when I get a few minutes! Throw in kids graduations, a handful of weddings, concerts and other parties and theres isnt a moment to breathe. Hope to update more soon, but may not be till things calm down in July!

Clumsiness and kids

Poor baby. He falls a lot. Has three scrapes on his knees and legs. Sound familiar? I really thought he would be my CMT-less kid who started walking right on time and wouldn't fall. I'm so sad that hes not. Who knows, maybe hes ok. but I look at him and feel guilty. S is also clumsier than most kids her age, but shes one year older than more steady. Any time i see her galloping on the cement, i cringe and pray that she doesnt fall. ANd when she crouches down and keeps the stance (something I cannot do), i secretly cheer.

Its ok. Y cries and than picks himself up. He doesnt seem to mind his scrapes. Hes really a baby in a lot of ways. He barely talks and always wants to be held. And hes over 2. Truthfully, I dont mind him being a baby. The two kids are so close in age that i dont mind having a kid and a baby. But i do want him to run around more and not be afraid of falling.

I used to be clumsy. i never understood why, in dance class, i couldn't get up without pushing the floor. I definitely tripped more than my friends but I didnt even realize it was connected to this weird disease that my uncle and brother have and we sort of have. Its so weird how little my dad was affected. i wish he was alive so i could talk to him and see his feet (and for other reasons :) ). I also had my share of dislocated knees (my whole family had them). But i didnt really feel like CMT affected me until I started to date and realized what a big deal it was.

I knew I might be passing on my CMT to kids. I'm ok with it. I mean obviously i kind of have to be. There is PGD but its not for us. SOmetimes I wonder how my DH is so OK with the possibility of passing CMT down. I love him for it. Plenty of guys (and girls) would not want it. But he kinda sees the big picture of whats important and that i am who I am despite (maybe because) of it, so no biggie. I am kinda torn of feeling like CMT is not really a big deal, just some minor inconvenience that thankfully doesnt affect the brain or lifespan and you can have a pretty normal life with it, good job, family, friends, etc. Than sometimes i'm like 'this is awful. it cripples you. youre so afflicted. Its the worst thing EVAR!'

I have a kid in my class thats so athletic and graceful. SOmetimes i dream of having a kid like that. who is everything i, and all my family members, aren't. My cousins are pretty athletic even though their fathers father had it (but not their father). Its not that important. I just would love for them to not be affected, or if affected, have it so its not a huge part of their lives. i hope by the time my kids are grown, there is a cure or a very easy way to make sure its not passed on.

Sigh

Thats a blissful, content, life is amazing sigh.

As humans, we have a tendency to live life waiting. For the next vacation. Party. Event. Holiday. We wait for the next stage of life as that has to be somewhat easier, we wait for the kids to finally be in bed because we need some me time. And its crazy. Cuz life can really just fly by and next thing you know you turn around and your some old lonely woman who lived life waiting. Or find out you are dying in another week. I know i'm being all philosophical and waxing poetry and I happen to be incredibly sappy because I just watched My Sister's Keeper with DH. So dont mind me.

But I'm trying to just take it all in and enjoy each day as much as I can. I know as a kid i didn't feel content. There were lots of fun and good times but there was also a lot of confusion and self-doubt. I never really liked school and had various issues with friends and other fun politics. I spent most of High School wondering why i didn't fit in and why everyone else seemed to 'get it' and what was wrong with me. Camp was great and spending time with friends but there was a lot of just blah time.

This past weekend was near perfect. No, not near. Perfect. We had lots of guests for the meal who all really like us. We went, as a family, to Lowe's. We gardened together, even little S helping (Y didnt really but he ran around giggling). We had an awesome BBQ today with lots of family and friends. The sprinklers were on. And I just took it all in and soaked up the good feelings. Who cares if my feet turn a little or whatever. I have a great house, wonderful family, and a backyard that is all mine. I love me. I'm finally starting to like my neighborhood and with each passing day, I'm realizing that house and yard life really kicks apartment living. Its amazing to me that I can be so full of good feelings on a regular night, in my own home and backyard. Not away on some Island escaping from my life. What can be better than just enjoying life? I feel almost like i'm in a movie and the big blow is about to happen. I hope not!!!

Anyway, just need to thank God for all the good and teh fact that we are all healthy and live in an awesome country and have all these blessings.

SOmeone bump up this post when I have a crappy day, k?

Rest of the day

well i did drive to the cemetary and it was raining. POURING. I was driving through rivers. my cell phone was broken. DH offered to pick up and watch kids so that was a relief not to have them with me. I listened to the funeral and it was good to hear but didnt make me cry. I got to the cemetary and didnt even leave my car because it was pouring. so i sorta spoke to Dad and God and asked for help and to keep looking out for us. It was weird because my mom told me to bring some sort of shears or something because the graveside was totally overgrown with weeds nad plants. But i got there (sans shears) and noticed it was completely clean. STrange.

Got back home. DH had taken kids to library and shopping and i actually had a few extra minutes. He came with kiddies and i told him about the graveyard. he sheepishly mentioned that he was there this morning and gave a gardener there a small tip to do it. I was so touched that he went in the first place without even telling me and took care of it. <3. I felt all mushy and warm and it hit me why I wasnt crying when i heard the funeral tape. As I heard the speeches, including the background noises of a funeral: tissues, sniffles, chairs scuffling, etc, I literally could pitcure myself sitting there. Next to my family in the front row, staring at the coffin. And life was so bleak and hard then. I was single and having a very hard time with guys and dating. Things were a little tough with other family members. I was not sure if or when life would ever get better. And here I am, 8 years later. And yes, its so sad that Daddy's not here. But my life is so much better than it was on that dark day. (BTW, his actual funeral day was beautiful weather-wise, none of this downpour). I'm married to an amazing guy, who despite some disagreements and arguements is really so caring and wonderful as a husband and father. I have two little kids including Dad's namesake. I really think he'd be proud to see what i'm up to and the life i've made for myself.

i spoke to my sister and mom after. And i decided, to prove to myself and my husband i could do it, i'd clean my room. Includign junk in closet and more. And it was grueling. Almost 5 horus of work with little break. And nothing to watch. Thank GOD the Yankees were playing and they were playing an awesome and itneresting 1-run game. When Mariano blew the run in the top of the ninth, i was annoyed but it did give me a bunch of extra innings to clean by! I wonder if i really can clean with NO distractions. I guess but its definitely easier when you are busy. ANyway i'm drained now but my room is GORGEOUS. Clean as whistle, vacuumed, etc.I still need to go through some drawers but man is this progress. Two full loads of laundry were folded and put away and another load started.

so in a better mood now. ready for bed. productive, emotoinal day. thanks for listening.

BTW - for those of you following at home that Yankees and Orioles are STILL tied at 1 in the 14th inning :)

Blah

Feeling a little blah today. Dad's yahrtzeit (death anniversary) is today (last night). Its strange, i know i'm suppposed to feel something. And I do feel strange. But i'm not just flat out sad. more like blah. I feel sadness at other random times. So we had a dinner last night in his memory. My brother always learns a book in Talmud in his memory and we celebrate its completion at the time of my father's yahrtzeit. 10 men need to be there so a couple of random uncles and cousins come and its so nice but it also becomes less intimate. We're not that close to a bunch of them and theres a lot of dead small talk. I feel like I can't really be myself. Especially when one of them, who is a wonderful speaker, gives a whole speech about how wonderful my dad was and all and i'm like 'you weren't even that close?!' ( i think this, dont say it). Next year i want it in my houes. Just my sibs and his sibs. i'll invite extra men when its time to do the actual thing, for deser. and lets all be real and remember and laugh and cry and be vulnerable. Not talk about how delicoius the roast is or how my new house is doing and 'why is this dragging, i have work tomorrow'.

Its also annoying, DH and I finally had an 'evening out' with a babysitter and and i feel like we fought a lot in the car. All about stupidities. I need a new laptop but we dont have money and its the second laptop i broke. i'm not as productive as i am when i have a laptop cuz then i watch things while I work and now I cant. DH doesnt like that i have a hard time working without entertainment. i dont like it either frankly but i dont know i dont think its that awful either. I think if i had more shelves and closet space i'd be neater, he doesn't think so.

I'm so tired of not having money for all the things I want to do. i'm tired of feeling messy and unorganized and irresponsible and blah about things. there are so many things i want to do and am just not getting done. the whole brace thing. not making new appointments for me and my bro because i dont have his insurance. fixing up things in the house and out of the house. printing my freakin' 1000 pics off the computer and putting them in an album. im so not a doer. I wish i was. am i lazy or just not ambitious? can i blame CMT for things? not really. Some CMTers are making videos or running companies. I'm confused about a bunch of things in life and i wish I had more close friends here I can talk with and connect with (not just online). i hate walking aroudn work like its a normal day and not beign able to share or feel that others understands make me feel so alone. I just spoke ot someone at work and feel a little better.

Anyway, this is for you Dear Daddy. I hope you're still there watching over us and can see that we still miss and love you.....I lit a candle last night. Mommy made a CD of the funeral. DH wanted to put it onin the car last night. his car doesnt have a CD player (its that old). im glad. i want to hear it all by myself and react however i want to react without any other adults around. I think i'm going to pick up the kids and drive to the cemetary and listen to it. i hope the kids fall asleep. i want to talk to Daddy and God in English, not pray in Hebrew like I usually do. its been raining on and off all week. i hope it rains. i hope i cry. i could use a good cry.

On Kids, Part II

So again i love my babies :). And for Mothers Day, my husband did a ridiculous thing for me. He, completely on his own, bought the kids clothing, took them to a photo shoot and put together a stunning collage for me. Completely awesome and shocking and i dont know what i'm going to do for fathers day!

I don't yet know if my kids have CMT. I'm going to assume they have and if I find out differently be pleasantly surprised. Neither is very graceful and both are prone to falling (sound familiar) but neither is terribly awkward or very late walker. S is getting PT and I'm getting Y evaluated too....he started everythnig on time but S's PT feels he could use it as he does fall and is somewhat clumsy. I'm hoping for the best but know i can give them an awesome life either way.

So thinking more about kids.....i came from a family of 4 and so did DH. I am very close to my sibs and actually always wish i had more siblings. Most people in our community have 4 or more kids, some have 6, 7 or even more. Not everyone is very big on birth control and many feel havinga large family is important. I always thoughts I'd have 5 kids. TO me thats a nice number; you have at least one of each (in my perfect world) and everyone fits in a regular minivan :). My sister has 3 girls and 2 boys and its lovely.

Anyway as I mentioned last time I was thrilled with my girl and my boy being born. and honestly, life is really good right now. i dont feel the need to make my family bigger at this point and wonder if i ever will. i mean granted, my kids are still really young, but most people in my community who have had kids Y's age are already on to the next one. 2-3 years was the perfect age gap in my book -- before my kids are born. Now, i'm thinking maybe maybe when Y is 4, s will be 5 and MAYBE i'll be ready. And my kids will be old enough to help me :). but it all remains to be seen. as i said, life is very good right now. i feel like my family is somewhat complete. Money is somewhat tight. And life is so exhasuting I cant imagine taking care of a newborn on top of e/t else.

Little things about CMT that makes mommying little ones that much more challenging:

• Running after them is hard! Especially up and down stairs, carrying, in and out of car seats, how about CARRYING up teh stairs!! S knows to ask me if 'you are very strong or only a little strong' because i usually can't carry her too far but her daddy can (and carry Y at the same time)
• energy level. i think this is one of the hardest parts of CMT. I get drained easily. which means i dont always have energy for the kids. especially after a full day of work. i relax on the couch a lot. but i also think i give them my all often and manage to get out with them and push myself as much as possible.
• getting them dressed. tough! Espeically snaps and buttons - help! and with little guys wriggling away! i try to get things sans buttons when possible or just pin them down, focus and hope for the best.
• dumb things like child safety locks and opening things are hard for me too :).

i didnt even realize how hard parenting would be before i jumped into it. i'm kinda glad i didnt think about it and just did it. i have never been so happy and felt so fulfilled in my life, exhuaxted as i may be.

so who knows what the future will hold. for now, life is great. i have to stop compraing myself to everyone else and do what works for us as individuals and a family.

oh and here's the collage DH made:

On Kids, Part I

I have two adorable kids. S is 3 and sing and chatters all day long. Y is 2 and follows his big sister around all day. They are blessings to myself and my husband and we try not to take them for granted. They are mischeiveious, adorable, fun, lovable and the absolute lights of my lives. They are also challenging and completely draining at times. Many a time actually. And while I know that some of it has to do with CMT, from what i understand, most moms with two little ones who also work full time find running after their kids challenging. In a way its absolutely crazy that i had them together (they are 14 months apart). But its also wonderful for all of us.

Just btw - I never thought about not having children. For me, I knew I wanted to be a mom and I never once thought that CMT is bad enough to not have a child who may inherit it. I understand not everyone feels like this but for me, it was never even a consideration not have children despite CMT. Anyway, onward. Or I should say, backward:

I had S on a wintery Saturday morning in January 2008. And while I found being a new mom hard I didnt find it overwhelming. Especially when i was off from work. I got to rest a lot and didnt do much more than nurse, change diapers and hold her. I still got to surf a lot, watch my shows, hang out with DH, etc, I just couldnt run around as much but that as OK with me. Although I was on birth control pills I hated taking them and never remembered the right times. Plus I knew I wanted a boy sometime soon to complete our family and name after my dad. Being that I was nursing full time and it took almost a year to get pregnant with S i kinda gambled a bit and told DH i'm not taking the pills anymore. a couple of months later there was a fun surprise accompanied with nauseau, swelling and general morning siockness. I was pregnant. And I had a tiny infant. Oh god what did we do. At least it takes 9 months for that thing to grow inside you, right?

Fast forward to March 2009. The Drs delivered a beautiful baby boy and I started crying. A girl and a boy how absolutely amazing. How shocking for me and not even my type (i thought id have to have 4 girls before a boy popped in. How scary. S was a chunky baby who was not yet walking and I have an infant to add to the mix. How were we going to manage?

(By the way I just wanted to stick in that unlike some other moms with CMT i never had issues with pregnancies or childbirth. I loved being pregnant --made me feel like there was a reason to walk funny! And my birhts were quick and natural, one with an epidrual and one without).

So that year I basically said to myself 'this is survival year'. And thats what we did. Before we were sending S out to a sitter, this time we hired a great full time sitter at home. she also helped with some housework. I even took her to the city when i spent some time there. She was a salaried employee, paid weekly whether i gave her off or not. On my days off, id take her with us to go to the mall or shopping or to the park or whatever. Or id meet DH for lunch like a rich lady. I was very spoiled though I definitely needed it. in the afternoon, I came home to a tidied house with no dishes in the sink and was able to nap while they were still napping. At that point we were living in a basement apartment down the driveway (so no steps) and my landlady was amazing. They often took S to play with so i could relax or focus on Y. DH was a huge help. I also crashed at my sister almost every Sunday when DH had work. My sister has three girls ranging from 6-10 who are huge helps and love my kids. Whenever i go anywhere with them i barely even have to take the kids out of the car. They were lifesavers and i'd take one or two with me whenever i'd go anywhere.

Those first 18 months were so challenging. They were somewhat of a haze at times. THey also flew by. and they were also the best months of my life at that point. SInce my daughter was born, life has only gotten better and more fulfilling for me. Even if its draining. In August we moved into our new home. There were stairs (although only 4 to get inside which was big for me). As fall came along, we made a financial and social decision that my daughter who was almost 3 was ready for playgroup. We couldn't find someone to share my sitter with and she was more expensive than we could afford so I became a big girl, took a deep breath and let her go. And this past year included me picking the kids up every day (including up and down stairs and in and out of car seats, so fun). And doing all the chores my sitter used to do. And amazingly enough, i'm surviving. In fact, more often than not i'm thriving. THe winter was a little tough. But now S can open the door herself, climb in her carseat and buckle her top. Y can climb in himself at least. Thats huge for me. I found the whole car seat thing so hard, I almost banged their heads so often while putting them in.

So I feel like we're getting to a good and easier place, slowly. And as hard as the beginning was, my kids are the very best of friends now. We dont need playdates because they have each other. And they keep each other entertained (although its more S thats ordering Y around, but still).

I want to write more on the challenges of parenting small children / babies and thoughts for the future but thats for next time.

Passover

Disclaimer: I started typing this over a week ago and than my laptop crashed. I was watching something while doign laundry (god forbid i should work without simultaneously being entertained) and apparently i pulled the wire and the whole thing came crashing down. DH just fixed it a month ago and i feel awful. i can blame it on CMT or not but i definitely am not as responsible as id like to be. ANyway, im just explaining why I'm a little behind but wanted to finish this post already. USA!!! /disclaimer

Pesach / Passover was super. I got a nice 10 day break from work and got to spend quality holiday time with my husband, kids, mom, siblings, nieces and nephews (theres gotta be a word for both), cousins, friends, etc. I was at my mom for almost all of it and in brooklyn for the weekend in the middle, leaving home from Monday - late last night. we also got to do fun Jewish things like have the Seder and eat a lot of matza and not much else ;) (just kidding my mom is a great cook). I love how my kids get a long with their cousins and my daughter said the Ma Nishtana and I was super proud.

This year we had a few days of "Chol Hamoed" but only one full day. Its basically a time for Orthodox Jews to go and spend time doing all sorts of fun things. Bigger kids and teenagers opt for theme parks and concerts, moms of little kids like me like to do more lower key things with family. For anyone that knows me in real life, I love free and I love Manhattan and being at my mom was a perfect way to do both. One day we got together with a whole bunch of married cousins and met in Central Park where we just played ball, belts, and hung out (I sat and watched ). Fantastic outing that was completely free (besides metrocard). Friday my nieces wanted to take the Tram (cable car) to Roosevelt Field so we took the city bus there and back. Again, a fun and cheap and different outing. Sunday I was superproud. We went to the staten island ferry (free boat ride from Downtown Manhattan) and ambitiously we decided to walk. i thought it was where the South STreet seaport was but its actually further. Checking afterward it was two miles!! And we walked back too! I think i overdid it as my feet were hurting after (even with several breaks). But still im so glad i did it. I love doing things that prove that I can do just about whatever i want. And here where I live, nobody walks anywhwere. i miss walking although i also like being able to drive and have parking and stuff. Manhattan is so interesting that its almost easy to keep walking. My BIL and niece actually walked home from Central Park too (almost 5 miles?).

Otherwise it was a pretty nice holiday with the typical ups and downs. I dropped a dish with potatoes which was very blah for me. Its one thing to know that my feet are affected by CMT but annoying if my hands arent performing to par. I just have to be more cognizant and take a plate under a dish or be more aware of when im doing things.

lots to do, hope to post more soon (from DHs office computer, trying to see if that works for me instead of always breaking laptops).

Here's my walk:

On Sickness

My Aunt Hannah was just diagnosed with ALS, otherwise known as Lou Gehrig's Disease. Its very sad. My mother is from a large family of nine. Her father died young, also of ALS. I never realized that ALS is genetic. Now mom tells me her cousin Lucille also died of ALS. HELP!! This is scary! All I need, CMT and ALS. THat should be a super fun combo. ANyway, of the 9, only a few of them got married and have kids. Her second sister, Lea died a few years back, and had alzheimers before she went. Now another sister Ida also has beginning onset of Alzheimer's. For now she moved into my mom's small apartment until they can figure out what to do next. And than Hannah found out she has ALS. They are not that old! I feel like i'm still a little kid....They are in their 60s.

I asked my mom 'what did you say when she told you' What do you say when someone tells you they have a debilitating, progressive and fatal disease? She basically said 'oh no. Is there anyting i can do, etc etc'. There is a drug that supposedly slows it but still its such a depressing thing to get hit with. It got me thinking a little -- compared to MS, ALS and a score of other diseases, CMT is a walk in the park. Sure its challenging. But its not life threatening and most people that i know who have it are still living long, full lives despite it. I really go back and forth about this issue a lot.

Is CMT an awful annoying disease that might also dibillitate and degenerate my children also? Sometimes I feel like that and thats kinda what the research makes it sound like at times. But for me, most of the time, its just an annoying part of my life that is on the back burner, its like the fact that to drive thorugh my neighborhood i have to pass through the ghetto....I dont like it and I do have to work harder to socialize, but it doesnt really affect my life so much.

I think this is one of the reasons I am so against doing things that label me as 'disabled'. That would almost be like admitting that this is a pretty bad disease, one that actually is disabling me. I dont want to be disabled. I know if I was more confident about myself and my body this wouldnt bother me as much but im scared to go there because I dont want it to be any worse than it is.

Theres a comment going around social networking where CMTers are posting that goes like this:

• YOU DON'T LOOK SICK! No, I don't. It's hard to explain to someone when they have no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bi-Polar, PTSD, LUPUS, FIBROMYALGIA, Crohns, Diabetes, Arthritis, chronic back pain, Epilepsy, MS, Depression, or for Me, CMT). ♥

So I get why this commetn is good. But I really don't agree with it. I personally LOVE the fact that my sickness is not obvious. How wonderful it is to be normal and at least not stand out the second someone sees you. I'm sure people with obvious diseases would be thrilled with a chance to just 'fit in', which thankfully I've been doing for my whole life. I also am not the hugest believer of spreading the fact that I have CMT to the whole world for this reason. Let me blog, vent when I need to, and go on with living for 90% of the time. Maybe others have it worse but I really feel sorry for those who are so debilitated or affected by any disease that it covers the forefront of their mind most of the time. There are those that blame anything they have, from memory loss to the flu to a fight with a spouse on CMT. And what a shame that is. Lets let CMT be what it is. Get the suppport we need. But dont let it take over our lives. I remember as a single girl signign up for a yahoo group and running the he!! away when I realized it was non stop complaining and groaning. i dont need that. I do love connecting with CMTers on FB and the like cuz i get to see their awesome sides. Most work, are in relationships, have full lives despite it which I love following.

Now all that being said, there are some times I do feel all sorry for myself for this awful disease that I didnt ask for. Why me? Why do things have to be so difficult and drainign at time. My husband, bless him, does not think CMT is a big deal. He generally does not pity me or wait on me hand and foot and sometimes it bugs me. But in reality its the best thing in the world becaues it reminds me that its just an annoying thing, not someting I need to blame for things or not do things for. If i really allowed it, CMT could give me an excuse not to work, not to have kids, not to clean, travel, walk, exercise, go otu with friends, etc. And I do it all. And i think i'm pretty darn good at most of it too. I cant judge others who choose not too because CMT really does affect everyone differently. And I should never come to a place that I really cant do things because of it. But for now, its really good that DH doesnt coddle me because it helps me to push myself. When I do really need his help, he usually is there for me. But attittude in general is so huge in cases like this.

OK, that was a lot of jumbling and mish mash and stuff. Whoever prays, please keep my aunts Hebrew name in mind that her ALS should progress as slowly and painlessly as possible and that a cure should be discovered soon! (While you're at it, pray for a cure for CMT. And CF. And everything else...). Her name is Channah Henya bas (daughter of) Shaindel

Thanks!!

I hate Shopping!

So last night, a friend of mine was going to the mall. I need stuff for Pesach (Passover) so i told her i'd come along. This is one of my friends who kinda knows I have some feet issues but doesn't get what it's really all about. Anyway, we leave at 7:30 and her neighbor is there too. Fine, we get to mall. I'm exhausted. We go into Macy's. I'm telling you, I hate shopping. And I really hate shopping with other women. I know its supposed to be more fun but its JUST NOT. It always starts the same way. I look around and it looks like there's tons of stuff. I get all excited, go through the racks. Very little is my size. I take what I can to the dressing room. It looks awful. I always wear the wrong bra when I shop. Anyway, I'm in the dressing room and the other two gals are complaining how fat they've gotten (I can't believe I am a size 8!). Let me tell you, I am not obese or fat but i'm definitely heavier than I should be and heavier than I've ever been. I'm a size L or 14 and a couple of years back I was M and 10-12. I could stand to lose about 30 lbs and I do hope to lose the weight but its not happening right now. But it just ANNOYS me when skinny people complain they are fat.

So anyway, I just want to talk more about why I hate shopping. Its draining. Its probably going to be an average of 2 hours. On my feet. Very hard for CMTers. I was wearing crocs which give no support. And its at the end of a long day. The worst type of movement for CMTers is no movement or sluggish and slow movement. I dont mind walking but it has to be brisk and the best is when I'm pushing the baby stroller (AKA my walker). At least MACYs had a nice seat in the fitting room, the WORST is when they don't. SO i'm trying things on. Feet are hurting. Dont like the way anything looks. When you try things on you face what your body really looks like and I'm not crazy about it. Plus the other two were irritating me. And usually I will go back and forth to the dressing room several times and each time i'm more drained. Coats annoying me. Its annoying to keep redressing and Im tempted to go back out in my underwear. By the time I'm ready to run out, I just grab something. ANYTHING. so long as the awful shopping experience wasnt a total waste. More often than not, that last-ditch item is not something I end up really wearing.

WHich brings me to the next reason I hate shopping - I hate spending money. Theres like something wrong with me. We did just buy a house and i'm trying to keep expenses low but i just hate shelling out hard earned money on something htat I might or might not like. Dont get me wrong, I love nice new things that look good on me and if I wear it its worth the price. But I hate spending on question marks and I hate spending full price. So than I'm fiddling through the clearance rack which means more time on my poor, unsupportive feet. And if I realize 'darn, MACYs had a coupon in the paper but I didnt bring it', i just wont buy the stuff knowing I could have saved $20.

Anyway, I ended up separating from the girls and going to H&M. Its much smaller there which is better too. I hate HUGE department stores where you don't know where to look first (and you walk and stand forever). I got a skirt and a couple of tops for Pesach and have to try it on for DH, he is the final say. He says we should go togehter. We went once on a day off in the fall and it was actually fun! He knows my feet issues. So we spend half hour tops. Grab a bunch of stuff. He cracks jokes the whole time. And if I need a replacement piece, he gets it. Gives me his opinions. And we pay and off we go. Best part? He hold my hand when we walk which makes everything oh so much easier (and might I add a little romantic ;) ).

Anyway I also bought a coupel of things for the kids. Love buying them clothing especially my daughter! And H&M have adorable jumpers for $4.95. Heaven!

The night ended with me waiting for the two girls. I sat in a shoe place at the exit of the mall feeling sorry for myself that some things were so hard for me. The high heeled shoes which I will never even try on seemed to be teasing me. I rarely even think about things like this but I do wish that I even had the option to try heels. Anyway, being that i'm not into fashion and DH is my height, I guess its OK, but I did spend a good few minutes feelings sorry for myself that so much of clothing and shoes is off limits for me.

Some people love shopping, its thereputic for them. Not me, no way. I guess its good for our wallet....

To Brace or Not to Brace

So one of the reasons for starting this blog -- I am seriously considering myself orthotics, otherwise known as AFOs, ankle-foot-orthotics, braces, or clunky aparatuses that make you walk better. Many people with CMT have them because our feet turn, there is a foot drop and a high arch along with hammered toes. This makes for walking and climbing and other stuff hard. So many opt for orthotics that help keep the feet steady and fill in the space where the arch and turned foot is. My brother always had AFOs for as long as I remember. In general, it was him that really had the disease while the rest of us just sort of had it (all 3 siblings got the disease, yay!). Interesstingly, my father who passed it to us was always strong like an ox and I never remember him having any issues. Its like he barely had the disease at all. BTW, my father passed away almost 8 years ago (wow) from cancer. Still miss him :(. But I digress. So AFOs are something that many CMTers use and for the most part it helps them get through the day better.

Why now ?

This is a good question. I feel like i'm 30 years old, have everything I really need in life right now and can maybe finally get past looking strange or whatever. I think i have the confidence and support group, but more on that later. I also do feel like my feet have gotten a little worse in the past few years (its a progressive disease and no one knows how much or quickly it will progress. the hope is it will be slow and barely noticeable). My feet have turned and its difficult for me to walk far, stand in one place, climb stairs, etc. I'm hoping that orthotics might help with this. Finally, now that I have two little ones, I am constantly busy and on my feet, more than I've ever been in my life. Did I mention my house has 4 floors (well this includes the attic and basement, but still!) So I want to make sure my feet are as protected and preserved as possible so I can use them as long as possible (hopefully my whole life). I decided around a year ago this time to finally get my act together and get to a doctor. I hadn't been to one in years and years. I went to the MDA clinic and went this past October too. Of course they recommended orthotics. I dont know if i'm going to go back in the spring as theres really not much anyone can do.

Orthotics are not cheap and there is a big range of them. The ones I'd probably be getting are about $500-1000 a pair. There are really cool and awesome ones that are crazy expensive and not even everyone likes them. But the interesting thing is my old insurnace didn't cover them at all. Since I am on the fence about them, i pushed it off. This past March we switched to an insurance that covers half. And a PT friend of mine said he knows a guy who might be able to help me financially because he's a freind and gives him a lot of business. So i decided to at least talk to him and see what he said.

Why Not?

OK, so i have someone who can work with me financially and listed the reasons why i'm interested....so whats the problem? Sigh. I just dont know. Look, I'd be lying if I said there wasn't the mental factor. Its a big deal to slap braces on and basically singles you out as disabled. I so don't want to be disbaled. But I know its all in the head. When I admitted this to an OT and the MDA she patronizingly smiled and said 'Not disabled, DIFFERNTLY abled.' How sweet nice lady who has no clue what i'm going through. You officially changed how I feel about the whole orthotics thing. Theres somethign so comforting about being normal and regular and not sticking out. Braces would change that. I dread meeting new people or neighbors or potentail bosses and having them look at those things on my feet first. i guess I can wear long skirts and leggings when its cold out. But no more short skirts ever? And its not something that really can be hidden or shoould be hidden if I decide to wear them. Right now I seem like any regualr person and even some of my friends have no clue that I have issues, they just think I have an interesting walk. But honestly, if I knew that wearing orthotics would only be a positive and good move, I'd get over myself and do it. I'm all about being open and doing whats right and trying hard not to care about what others think. But I'm worried that they may do harm as well as good. That i'd come to rely on it, need it all day (one friend only takes them off to shower or sleep). Not everyone does but she says they really help her so why wouldn't she wear them all the time. Maybe its a good thing? And they seem so cumbersome and heavy. And what if my muscles deteriorate more because I have this aid? I like walking briskly and lightly and could I do that with orthotics? Plus my job relies on me getting up and sitting down and sitting on the floor which would probably be more difficult if I were wearing big clunky things on my feet. I dont know. I just dont know. i guess it cant hurt to get it and try it out. But part of me is like 'waht do you need this for, just continue life as is'. Its not like i'm falling all over the place or cant move. I'm getting by. Its just hard and sometimes draining. I would love for things to be physically easier. Woudl orthotics even help with that?

-Confused

Welcome!

Hi. I'm taking a brave step and putting this out in the open. I don't know how much I will share with who but I’m tired of keeping it all in. I’d like to thank Michele and Nicole for inspiring me to blog about this part of my life. It’s always been so private – and private means dark and bad and secretive. Somehow when you take it out in the open – and you can laugh and talk about, it just becomes another part of your life and not that bad. I don’t think I’m ready to tell the world now, especially because my whole family still wants to keep this under the wraps (my sister would faint if she saw this). But I don’t think she’ll ever see it. Anyway for now I’m sharing with people I am comfortable with and I trust and we’ll see what ends up happening. For now, I ask that you keep this somewhat private and not share the info I put down with just anyone.

So who am I?

Well I’m a Contemporary Mom of Two, duh! I think that means I’m cool and hip and a mom of two. I tried figuring out a nice acronym for CMT and thought about cool or challenged or crazy or charismatic. But I like contemporary, it works. And the mom part is a big part of who I am. And two is as many kids I have plus if/when I have one more, T can still work J. So I have a 3 year old daughter S and a 2 year old son Y and they are the light of my lives. They are gorgeous (though they both look like their dad) and exhausting and fun and challenging and so full of personality and love. I am so grateful that I have them in my life.

More about me:

So I’m 30 year old (contemporary) mom of two. I am married to a great husband and father, A, who I’m sure will make it to the blog here and there. I got married almost 5 years ago and life has been better and better since that wonderful day. This past summer, we bought our dream home in one of the neighborhoods in Queens. Still getting used to the area and home ownership in general but I think it’s the best move for our family and our future. I grew up in Manhattan and miss city and apartment life at times. I still feel like I’m a city girl – and I go back whenever I can! Anyway, life is really pretty awesome right about now. I have my dream man, dream home, adorable son and daughter. I’m surrounded by family and friends and have a good job that I enjoy (Special Ed Preschool Teacher). So for the most part I feel very blessed and lucky.

One of the not so awesome parts of my life is the fact that I have Charcot-Marie-Tooth which has got to be the dumbest named disease ever, no offense to the three brillant doctors who discovered it. I’m not going to labor into what it is, if you want to know, you can google it (although its not as bad as they make it sound). But basically it’s a neurological disorder that affects the extremities; hands, arms, legs, feet. It makes them weaker and it makes some everyday things like walking, climibing stairs, buttoning things, etc more difficult. I'm more prone to falling and I tire somewhat easily, Its also hereditary which means it can be passed down to a child. Which isn't such a fun thing to think about. I try to keep positive, use a lot of humor and surround myself with loving and positive people. And its helped a ton to meet real life folks with CMT (both online and in person) because they are really all so awesome, down to earth, in stable relationships, have jobs, positive, busy with life, etc. Recently some new developments have gotten me thinking which is what prompted this blog (hope to share it in upcoming posts)

Anyway, to wrap it all up, I couldn't fully describe myself without mentioning my religion. I'm an Orthodox Jew which means I take religion kinda seriously. Besides for believing and connecting with God and all that, I do a lot of interesting things like only eat Kosher, take a break from -- well everything basically -- every Fri night and Saturday and think about Israel often. It also makes me somewhat unique in the CMT world as I have yet to meet a religious Jew who has CMT (besides for family). I feel somewhat alone in certain ways because the folks in my community don't really get my CMT issues but my CMT friends also don't really understand the challenges that face me as a religious Jew. Both culturally and for religious purposes, there are challenges that are uniquely mine. For example, I don't wear pants (unless its under a skirt), which makes it harder to hide braces or whatnot. I can't attend the local support group because they are always on Saturday (technically, i could walk the 2.5 miles from my moms place but it would be kinda ironic...). I guess the biggest difference would be culturally, we're about 3 decades behind on openness and transparency. Things are better than they used to be but folks are very hush hush about issues. Especially if it can lead to difficulties in 'shidduchim' which is how many in my community meet and marry (think blind dates with a lot of background checking). I and my sister both dealt with rejection when dating; and it was from several guys in my case. I was so jealous of all the CMTers who just tell their boyfriend/girlfriend and no big deal. Because in my culture it is somewhat of a big deal...thankfully A and I met and tossed all the silly rules out the window and I know he is a keeper. But it makes the whole issue of being open and sharing somewhat difficult. Especially if other family members don't want to share.

But anyway, i'm a firm believer that we, as humans, generally share a lot more in common than we differ from one another. We all have hearts, feelings, emotions, thoughts and fears and arms and feet (whether they work to full capacity or not ;) ). But feel free to ask any Q if you don't understand something.

I also want to warn you i am NOT a consistent blogger. I don't like typing though i do love to talk and share and communicate. Also sometimes i write very long, other times short and choppy and I often don't reread before hitting publish. If any of these things offend you, RUN (or if you have CMT just walk quickly).

Here it goes :)