Friday, August 27, 2010

I am not alone.

I have talked about the feeling of isolation many, many times in my blog. It was the overwhelming feeling I had in the beginning- the feeling that no one else was going through what I was going least no one in a 50 mile radius. First I found Kindred, who was expecting at the same time I was, was having a boy and was even a LOST fan!! :) She is quickly becoming a close friend along with a handful of others I've met as a result of our Friday playgroup at Club 21 (a resource center for families and children with Down syndrome). Well, now, I am beginning to see what a small world this little Down syndrome community really is. It starts back in February, while I was still pregnant with Elijah... I was at a park for a kid's Pirate-themed birthday party with Christian. During the party, we took the kids on a "treasure hunt" all around the park to look for the buried treasure (which was actually buried in the sandbox...super cute). When we got over to the sandbox and the kids were digging up the treasure chest, I noticed a young girl with Ds, playing with her parents. I kind of stalked them for a bit while I tried to get up the courage to talk to them. I finally (trying to be casual) said something like, "How old is she? Does she have Down syndrome?" They answered with her age (5) and confirmed that, yes, she did. I told them that the baby we were expecting has Down syndrome. Suddenly the whole dynamic of the conversation changed. They immediately opened up, were warm and friendly and answered a ton of my questions. The husband even said, "It was great meeting you. You know one day you'll end up at our house for a BBQ- mark my words." I kind of laughed, and he said, "No. Seriously." His wife, Jen, mentioned that she was part of a Mom's group and I should meet everyone. I told her I would love that (in my head I was thinking, There's a whole Moms group of people who know what I'm going through?) We exchanged numbers and have been in touch one or two times, but nothing extensive yet.  Then, I met Sunshine on an online board through Baby  When I saw that her profile listed her as living in West Hills, I immediately sent her a message.  We've gotten to meet in person a few times now at Club 21 and one day she mentioned something about a Moms group.  And that I should come.  It just sounded too familiar.  I asked if she knew Jen from the park and she did! It is the same Mom's group.  So, last night was a Mom's group night out at one of the women's houses.  It was in Studio City- just 12 miles from my house!  I came bearing gifts of wine, taquitos, and a little bit of nerves.  I already knew Jen, Sunshine and 2 women from Club 21, but the house was full of women of all shapes, sizes, races, ages, and professions. All different, with one thing in common.  I was kind of heady. It was a great night.  I'm so impressed with these women that I met.  They are an impressive group. I heard stories that were both terrifying and exhilarating.  I saw pictures and got to meet the host's 7 year old boy with Ds (and her two other adorable children too.)  They asked about how I was adjusting and we talked about what "adjusting" really means.  It has little, to nothing, to do with the baby with Down syndrome.  It is adjusting to our own thoughts, perceptions and expectations about what being a parent looks like.  I got to bounce off my new experiences with the Regional Center and the Child Development Specialist with everyone and was met with many nods of understanding...and GREAT advice also!  Now I actually have a plan.  I know what to ask for and how to handle it right now.  That kind of knowledge and confidence to go forth with is invaluable.  It was amazing.  And ultimately, there was wine and food and girl talk, and it was so, so good. 

I'm not alone. I'm far from it. Even though Down syndrome is a dying diagnosis due to prenatal testing, there are many of us that decided to "go with it" no matter what "it" meant...and it's turning out that "it" is pretty darn special...


Trycia said...

I LOVE you Jen. You are so strong and beautiful. Hang in there...more wonderful moments and miracles to occur. You and Charles are so Blessed! :)

Your Forever Friend,

P said...

Great great news and wow, sounds like quite a large moms group! I'm so thrilled you found an interesting and helpful one. Be sure to share your blog with them, I bet your posts can help a lot of them and especially prenatal diagnosis and new moms (so far!). The timing after Mondays visit is lucky too. Tips on managing your own regional center are invaluable.

Fun fun fun! And awesome connections continue, keep finding them as you go along--I still am two years later.

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