Saturday, October 11, 2008

alone yet united

Sometimes, really, I feel so very alone in my journey with Lauren which is odd because I know that i'm not and I know that there are thousands of other parents 'out there' just like me. Or at least, sort of like me.

I read alot, I spend alot of time online and I try to interact with lots of "real" people, too. I reach out to others and sometimes, they reach back to me.

Raising Lauren is not a difficult task. Yes, she has Down syndrome but that is not that hard, at least not anymore. The first year was pretty exhausting but we got things figured out and she has been in really good health for the past 9 months. There are appointments for therapy and the missing hearing aid and my own incessant need to constantly stimulate her. But, in reality, her easy going nature, smooth disposition and adorable smile make her quite delightful. She does not make the demands on me that her 5 year old brother does...not even close!

Back to the loneliness thing. It may just be me, but I find it hard to feel part of the big picture of "the world" or even of the "Down syndrome world" in the way I would like to. I'm either too tired, too broke, too busy or too unconnected. I'm out alot but not really doing things other than driving kids to school, running errands or going to appointments for anyone of my 5 children.

I used to be part of group of mothers who all met at La Leche league. We planned weekly get togethers and outings and it really helped the first years with Gabe feel full, interesting and fulfilling. And, while I've met lots of great people since Lauren was born, I don't have that type of group anymore. And, I wonder if I ever will. Will we be (or have we been ) left out or not invited because of Lo Lo's DS, because of her slower development?

When I go online or read books, such as Road Map to Holland (by Jennifer Graf Groneberg), I get the chance to get plugged in again for awhile. I've learned so much from my online community of friends - we share the trials and joys of our experiences and have a bond forged from common fears, discoveries and chromosomes.

I guess I just wish things were different for awhile. I wish that it wouldn't be that hard to make new friends and I wish that that feeling I get sometimes, that we really are all connected would last and would mean something. And, I wish that I could shake away these lonely feelings that I get sometimes, because I know that my life is meant to be full, interesting and fulfilling. Maybe even happy...not despite what i've been through but because of it.

1 comment:

Hector and Jennifer Varanini Sanchez said...

Hi there,
I know what you mean about your feelings in this post. We are all in this journey together so it's always comforting to know that we are not ever alone however we may feel lonely at times. I wanted to get back to you about Joaquin's patterning. If you want to learn more about exactly the why, what and how's of the patterning and the crawling track, etc., I would absolutely recommend the book "What to do about your Brain Injured Child" and "How Smart is Your Baby"....in fact, if you could only pick one I would pick the "How Smart is Your Baby" one....almost everything we are doing for Joaquin is in that book. The other book is great to get an understanding and a background on the why, etc. In both books, they have the building plans for the crawling track and the inclined floor. We did a combo of the two so we would have the most flexibility. My next post is going to be about his progress with crawling....we're just about there and it's so exciting!


Gabe, Curtis and Dav

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