Saturday, October 22, 2011

Just Like Us

Back in January (what seems like a million years ago now), when we learned of Wyatt's diagnosis, I started my search for stories similar to mine.  I never had anyone in my life with Down syndrome... in fact I didn't know anybody who did.  I certainly didn't know of anyone who had multiples where one was "typical" and one had DS.  One of my major stumbling blocks was just that... no one that I was coming across had ever seen it either.

I kept searching as our case it had to be more than just theoretical.  Near the end of February, I found this story:  The Twins who are 'one in a million'.  I found this story comforting;  not only did other twins like ours exist, but they did not seem to be bothered by a few nagging questions that I was ruminating on at the time (What kind of life would Zoe have?  Would Wyatt be accepted by her friends?  His peers?  Would both of them have a social life?  What would life look like at 18?... and so on).  In the early days I read this story over and over.  Shortly after, I found this one:  When 1 twin has challenges, the other steps up.  I found this one comforting as well.

The search went on.  I was posting on a few DS places, looking for people in a similar situation when I was contacted by Shannon, who now writes under the name of "Justylou".  She has twin boys that are 11 now;  Davey has Down syndrome and Will does not.  Through her blog I have been able to see the future.  It contains normal, happy things, just like any other family.  Her blog is called "Love life and be gentle".  She ends every entry that way,  "Be gentle".  I strive to to emulate this every day.  Be gentle to those around you, be gentle to yourself.  I can't thank this lady enough, for her tireless efforts (she blogs almost every day) and for reaching out to me when I was floundering.  She too is participating in the 31 for 21 Challenge

Shannon was also kind enough to point me towards Multiples DS Listserv, a Yahoo Group for parents of multiples where at least one has Down syndrome. If my sense of  isolation hadn't started to erode by this point, it surely dissolved that day.  Twins, triplets, even quads (!) where some or one had DS and the others did not.  A whole group of people that know exactly the double whammy of having multiples and special needs.  I have learned so much from these folks.  It always helps to network and to have someone to talk to that knows exactly what you are experiencing. 

Initially, It was daunting to be faced with twins:  even more so to have one of them with a "visual" disability that we would not know the total extent of for years. As I've said, I can't describe how reassuring it was to be in contact with other families that faced the same challenges.  Knowing you are not alone is a key part in your journey.  I would recommend networking as one of your first priorities when and if you find yourself in shoes similar to mine.  We did and our lives were enriched by the people that have entered it.  People, just like us.



  1. Hey Jen.

    Thanks! You rock. I have learned so much from you and your blog. I am thankful for our friendship.

    Love life and be gentle,

    1. I am very thankful for our friendship as well. I also don't think I tell you that enough. xo

  2. Wow, such a great post in so many ways. The reminders to "be gentle" with yourself and others and "wer're more alike than different" can be applied to anyone. Even on your search for connection with others who have your rare circumstance, you've found a way to connect with everyone.


Thank you for your comment.

Although discussion is encouraged, disrespectful or hurtful dialogue will be removed.

Spam will be fried up with a side of tomatoes.

Related Posts Plugin for WordPress, Blogger...