Photobucket

Saturday, February 18, 2012

The Down syndrome family

When I was about 8 months pregnant with Colin, we were at one of Kenneth's basketball games at a high school about 40 miles away. Out in the foyer area, a little boy was toddling around, just a little awkward on his feet. I couldn't tell how old he was. My "Down syndrome radar" wasn't very finely honed yet, but I guessed from his facial features that he might have that extra 21st chromosome. I watched him for a while, and tried to figure out who his mom was in the crowd of people. When I found her, I hesitantly approached her. "Hi! Your little boy is so cute! How old is he?" She told me he was 5. "Awww. He's really just adorable. Does he.... does he have.... Down syndrome?" I could tell she was a little taken aback, and she answered, rather suspicious and guarded, "Yes...." I breathed a sigh of relief and said, patting my belly, "Oh! Because this little boy I'm expecting has it, too!" Her expression and posture immediately changed and relaxed, and she said, "Oh! Congratulations!" And we chit-chatted, and she assured me that this journey I was about to embark on would be challenging, but it would change me for the better, if I allowed it to. We exchanged phone numbers, and as we went our separate ways, I marveled at the love I felt from her as she welcomed me into the Down syndrome family--this amazing club I'd never known I wanted to join.

I'd already experienced this warm acceptance in a couple online communities I found in those early, frightened days post-diagnosis. I'd gone searching for information, for support, for whatever I could get my hands on after we'd received a positive result from the amniocentesis. What I found were people sharing information, supporting and encouraging each other (supporting me! Was I ever needy!). My favorite resources at the time were the Down syndrome pregnancy support group on babycenter.com, as well as its partner, the babycenter.com Down syndrome group, where so many amazing moms of kids with Ds hang out. Here I found ladies who were either in the same boat I was--pregnant with a baby who was already diagnosed with Down syndrome, or who were "waiting it out" with higher odds due to bloodwork results or anatomical "markers" on ultrasounds--or women whose children with Down syndrome were already here. I still marvel at those amazing women, who check in almost daily to welcome frightened, worried women and offer support, encouragement, and all of the awesome information women in that situation often crave--especially reassurance that life doesn't end when a child with "a little something extra" joins a family. On the contrary--the insights that these wonderful ladies provided about life with their kids helped me to eventually look forward to Colin's birth with excitement and anticipation instead of dread and fear. From those 2 support groups, I was pointed to downsyndromepregnancy.org, which is an amazingly well-thought-out website, created by amazing moms of kids with Down syndrome, and reviewed by doctors--specialists in the field. I devoured their free e-book, which covered all of the topics I was anxious to learn more about, in a soothing, yet informative, way.

One of the other resources I've loved since being pregnant with Colin has been "mommy blogs"--blogs written by moms of kids with Ds of all ages, who chronicle their family's lives. These blogs, with their humor and poignant reflection, helped me get a glimpse into what life might be like with my little boy, and they helped me realize something huge: that my life would be so incredibly normal, in spite of what seemed like such a scary diagnosis at the time. Links to many of my favorite Ds mommy blogs can be found on the right-hand side of this page.

As amazing as life with Colin has been in this first year, as much as I adore him and want to eat him up daily, as much as he is my favorite part of this experience (obviously), the love I have for the Down syndrome FAMILY comes in at a close second. Because I have Colin, I was linked up with incredible people like my beloved Lexi, whose Abby is betrothed to Colin (I met her on babycenter, so it's sort of a matchmaking site, too, in a way), and so many other awesome moms who have now become my good friends. Seems like everyone I know in real life has a friend or a family member who has a child with Ds, and we've been connected with each other because of this bond. I've been linked to people on Facebook through people I know in real life--those people say, "Oh! You have a kid with Down syndrome? I'm sending you friend requests for 100 people you need to be friends with!" And those people have embraced me. We may have nothing at all in common other than each having a child with Down syndrome--we may differ in religion, political views, geography--but the bond created by that extra 21st chromosome is strong. During those times of uncertainty, of wondering what lies ahead for us with Colin, I look to those who started down this path before I did, and I see that in spite of the challenges that come with the territory (when has parenting ever NOT involved challenges?), these parents LOVE their kids, and are proud of them, and are tremendously grateful for the opportunity to parent them. And I realize that in parenting Colin, I find myself in very good company in this Ds family. So it's without hesitation that I'd say to others who are just embarking on this journey, "Congratulations! And welcome to the best club you never knew you wanted to join!"

3 comments:

  1. You made me cry my own tears!

    It really is the second best part about having a child with Down syndrome. I get on facebook and see someone that I've never met in real life and look and see that we have over 200 mutual friends. The Down syndrome community is WONDERFUL.

    I feel the same way about you. I'd take Abby having Down syndrome all over again just because it brought you in my life. Oh my disgusting gush. Now lets open mouth kiss. You can delete this.

    ReplyDelete
  2. I love to read your sentiments and the 180 change from your fear that you felt one year ago to today. I reread your May 17 post, I am so happy that you have received the support from the people, individuals and groups, that could give you the love and acceptance we all need in our journey here on earth.

    Thanks for the past friendship we have shared, i feel a better person for having known you. Thanks

    ReplyDelete