Monday, August 10, 2009

Welcome to the Club

So, it's been over a week since we returned from the National Down Syndrome Convention and I am just now feeling ready to write about it. Well, not really, but I feel I need to even if I'm not ready.

First, let me say we are glad we went to the convention and will go again. We learned great information and met some terrific people (loved meeting some fellow bloggers). When we first returned home, I thought I just felt neutral about the experience. Plenty of good and also plenty of reality check.....but, as I've processed more, I've realized it was really harder for me than I
expected. It was our official induction into the "Club" we never wanted to be part of.

The hardest parts for me were the speakers and seeing a lot of adults with DS (I still love seeing children with DS) in one place. Yes, those who spoke at the general meetings were impressive and inspiring, but some were also still tough to understand. And if these were the "chosen ones", would this be the top of what we could expect for Nate? And then there was the really broad range of adults with DS we saw throughout our conference experience. Some were well-spoken and took pride in their appearance while others looked like they'd given up and simply shuffled along with their caregiver.
So, how much of this is the direct result of their upbringing? I have a hard time believing that all of those people who "shuffled around" were not given the opportunity to succeed - yes, maybe some of them, but not all. Does that mean that we could give Nate every chance to succeed, spending a lot of time, energy and resources on him, but his ceiling is already determined?

When this day started, I had resolved (AGAIN) to focus on today - to look at Nate for the sweet little guy he is and try not to get bogged down in the worries of the future.

But then, during naptime, I had to make phone calls for appointments (hearing aids, 2nd echocardiogram, cancel OT because it seems redundant right now) and do some research (are there any speech therapists in our area who practice the kind of therapy I learned about at the convention?) and those just sucked me right back out into the concerns and "what ifs" I have a hard time escaping.

So, for those of you out there who are praying for us, this is my ongoing prayer request: That we would live in the present and be hopeful for the future.



  1. I totally understand what you're feeling about loving to see our children w/ Ds and then, seeing adults, maybe fearing for what the future holds. I was right there with you, especially when John Michael was Nate's age. I guess I've grown and changed a lot this year and I still prefer to live in the present so not to be bogged down with worries about the future. I think (and hope and pray!) that as time continues on and you are more and more excited about what Nate is doing, that it will get easier for you -- with some bumps along the way. Enjoy where he is today, but there'll be a day when he's walking and reaching out to hug you and pat you on the back and giving unsolicited kisses. Those days, the really good ones, are still ahead. Just don't look too far ahead just yet. You're in my prayers :-)

  2. I too feel the same way Danielle. It's day by day for me too. It's the best place to be. We cannot predict the future so it's best to enjoy today. So great to meet you. Just wish we had more time together!

  3. I totally understand what you're staying and what you're feeling. I will be thinking of you and hoping each day you'll be more focused on today and more hopeful for tomorrow. Your Nate is adorable and you deserve to enjoy every minute with him.

    I thoroughly enjoyed meeting you and Bob and Nate and will definitely be in touch the next time I'm out visiting my sister so we can get together again.

  4. Thank you for your honesty in this post. I understand your worry and have the same concerns (my little guy is 5 months old). I think that in 15 or 20 years we will still feel lucky to have our kids and we will feel they are amazing and special- no matter what their abilities are- just like we do now. That won't change one day because they're older.

  5. Hi Danielle!

    I just checked back in to read more of your blog... I, too, wondered where my son would land on the broad spectrum that is DS. Don't despair! Your child is YOUR child, and will come to look like you and your husband and your other child.

    My 15 year old with DS was just diagnosed last year with ADD (non hyperactivity) just like his 11 year old brother... which meant a LOT to me, b/c he is so spacey when not on his meds that his middle school teachers weren't even sure he could read, even though he's been a proficient reader since he was about 8. They chalked it up to his DS, when really it was his similar body chemistry to his 11 year old brother that was the culprit... and now that he's on meds, they have NO problems getting him to perform at the level he's able to. You will know your child better than anyone! Keep at it!
    Jenni Porter