Parenting, life, love, religion and a very silly-sounding disease.
Monday, April 4, 2011
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).