We went to our first Down syndrome conference this weekend. To my surprise, it was a day filled with many different emotions. Excitement, connectedness (is that even a word?), worry, acceptance, fear, love. As a matter of fact, it's been 2 days and I think I am still trying to get myself back on track.
Our first session was for new parents. We met Dr. Allen Crocker as well as a couple of other well known women in this area, who also have children with Ds. They spoke about various issues, told stories, and then welcomed questions from the new parents. It was amazing...the connection I felt with all of these people. Even though I did not recognize their faces, even though I did not know them, I know they have walked our walk. Everyone sitting there, in that room...they know. They know what it is like. I kept looking around the room. There were so many babies in there. All with Down syndrome. And their parents. Ah. It was amazing.
The next session we went to was called: "Medical Issues In Children with Down syndrome". Need I say more? Ugh. You know, originally I had thought it would be important for us to gain more knowledge about the possible issues we may be faced with down the line. Um. Well. Maybe so, but it was certainly not the best idea for a worrier like myself to sit through a session like that. Sheesh. I left that session feeling anxious. And paranoid. Every move that Dylan makes now I wonder...hm, autism? Could it be? Please don't let it be that. So, yeah. That session was blech. I told Dave it was WTMI, in which he responded, "What the heck is WTMI?". Wayyyyy too much information, my friend. Way too much, indeed.
We attended a luncheon in which the keynote speaker was a 20 something year old girl with Down syndrome. She made a beautiful speech about her life and her dreams. At some point during her speech, it hit me, yet again, like a ton of bricks. Dylan has Down syndrome. Dylan is going to be a 20 something year old with Down syndrome. Sounds odd, doesn't it? Here I am, at a Down syndrome conference, and it took me until about lunch to fully grasp the fact that my baby, who has Down syndrome, will grow up to be a 20 year old with Down syndrome.
Dave went to the last session about financial planning while I decided to blow it off. By this point Dylan was getting tired as was I. In between my yawns, my mind raced with thoughts. Thoughts about Down syndrome. I spent the last hour or so with my new friend, Michelle, and her little guy, Aaron. We walked up and down the halls trying to process this Down syndrome stuff and what it may mean for our sons.
I am glad that we decided to go. I mean, it was a lot. It was a very heavy day, but a day that was necessary. Another step forward for us in this journey, I think.
16 comments:
I think it was a huge step. It must be so great to be surrounded with people that have been there and know what you have been through, going through and are your challenges ahead. I hear you on the what may happen stuff, that is something you and I def don't need. We already worry about everything possible! But it is good to hear, so IF something were to come up you wouldn't be totally caught off guard. Sounds like a overwhelming but positive day. Any pics?
That is so great. I would have been freaked in the medical session, too, especially as much as we have already been through. I know this may sound silly, but I just have this fear that B will get leukemia. Sigh...I know that worrying won't do a thing, but it's still there in the back of my mind all the time.
That realization that hit you...I have had that before. It was in January. It. broke. my. heart. Here is my tearful blog post about it:
http://theamicks-angela.blogspot.com/2009/01/home-not-so-sweet-home.html
((((HUGS))))
I have yet to attend any kind of DS function. There have only been two here locally. One was our Buddy Walk. We were out of town for B's OHS at the time. Another was a social thing--bowling. But I had an out-of-town Internet friend (LOL) staying with me that weekend.
I cracked UP at your comment about when you said WTMI and your DH asked what it meant. Oh, wait...you do know what DH means, right? LOL
That sounds like a neat opportunity that you had to go and learn and meet other parents of children with Ds. I'd be interested to know how you heard about it? I think my wife and I might be interested in going to one of those at some point.
Hey Laurie - It was great to see you at the conference. I'm really, really glad you went. I think the first experience can be overwhelming. But, connecting with others is so important for you and for Dylan. The medical stuff can be scary - but at least you know what's out there. Hopefully little of it will apply for Dylan - but at least you know what to look out for.
One of the mom's at the conference is organizing a mom's group - I'll forward the info on to you when I get it if you're interested.
I know exactly what you mean. Right down to it dawning on you that one day your son will be an adult with Down syndrome--as if it could be any other way. I get it.
But wasn't it so great being around those other people and all those babies/people with DS. Imagine a world where that's how it was, just EVERYWHERE. I think it would be so amazing.
Thank you all for your comments. : )
Jay - I'm not sure if you'll see this, so I will leave you a note on your blog as well, but we heard about the conference through the Massachusetts Down Syndrome Congress. We are members of the group and receive newsletters about upcoming events. Not sure if they have something similar where you live?
Sharon - It was really great seeing you and Brennan again! I would love to receive info. about that parents group, definitely. Thanks for mentioning it. : )
I so understand what you mean Laurie. It's the adult part of this that scares me the most. But then I spend time on Sarah's blog and Dan Drinker's blog and I started to feel better about it, less scared. I almost wish I could keep Joaquin the age he is right now forever. A perfect baby boy.
I think its awesome this conference was near enough to go. I cannot imagine the feelings it conjured up.
I love you
aaahhhhh...give Cass a big ol' squeeze from me for remembering Lily...that's the sweetest thing I've heard in a long time.
I went to the NADS conference in Chicago in November. I enjoyed it, but like you was a bit overwhelmed. I'm glad I went though. I met a couple of BBC moms and learned some important information.
I just keep taking it one day at a time and thank God that Lily is doing so well.
It sounds pretty intense. I'm glad you got a lot out of it.
How overwhelming. I don't know how I would have reacted? Probably a lot like you. I too wonder what life will be like down the road for our Liliana. I'm sure though that it was comforting to you to meet so many other families with Ds kids. I still struggle with the fact that Liliana has Ds, though I feel like I have accepted it, it's still hard at times. I'm glad you and your husband got something positive from the day. Dylan is a very lucky little boy to have such great parents as you!
I admire you so much, Laurie, for jumping in feet first. You are an amazing and courageous advocate for Dylan. Many ((hugs)) to you, my friend.
I agree about the adult aspect of Ds - I have a hard time thinking of that too... while Whitney is still a baby it feels like I can "protect" her more and thoughts of the future are scary! I agree with what Jennifer said about Joaquin, in a way I wish I could keep Whitney this age forever - but that wouldn't be fair to Whitney. No doubt, this is a hard thing but we are all doing the best we can!!! Thanks for sharing about the conference.
It's a good thing that these kids were sent to such caring, concerned and loving parents who can handle anything that comes our way. I too worry and stress but then I figure any kids can get anything. I try not to overload myself to much as I just worry myself to death but I think it was good that you went so you know what to look for and can educate the rest of us.
I've gone to Down syndrome events, but never a conference. I keep meaning to go but something keeps coming up.
Don't fret about the whole autism thing. Kayla has Down syndrome and autism and it's not really a big deal. I mean, yeah, she's really behind her peers with DS alone, but she's still Kayla. An autism diagnosis doesn't change that. And you can't die from autism.
Leukemia, that I fret about!
I'm glad you were able to get some more information and maybe make some new friends.
Post a Comment