Thursday, June 3, 2010

A Little Nervous

i'm getting a little nervous about going to the national down syndrome congress conference in july. (no reason to wait until the last minute to get nervous!) last weekend tim and i encountered an acquaintance whose adult son has down syndrome, and tim was able to meet him for the first time. he was not very responsive, didn't have much to say, and as we talked about him later, it made me sad. perhaps it was because he was in an unfamiliar setting, it was noisy and he wears hearing aids, etc. i don't know if he's that way all the time, but i've kind of had a sad week. is that what wyatt will be like in 30 years? or will he be like the other young man i met a couple of months ago who i could hardly tell had down syndrome? who spoke so clearly and was so engaging and personable.....

a friend reminded me this morning that our kids have so many advantages in this day and age over those born 30 + years ago. their parents were told to put them in institutions, because they would never walk or talk....surprise....they are walking and talking! and learning, and working, and living a full and meaningful life!

remember, this is my place to be honest.....i know that as wyatt grows it will be more noticeable to us and others that he has down syndrome. at this stage he's still such a baby that i don't notice it that much, except that we work hard to do the things he needs to learn to do..... and not everyone notices it either. last year we went to the florida ds conference and it was difficult to see kids and adults at different stages and levels of functioning. of course wyatt was only 5 1/2 weeks old, and everything was still painfully new to us. but sometimes it is still painful.....


  1. Thanks for being honest Penny. I struggle with the same things. It really is an ebb and flow of emotions and worries. Hugs to you today.

  2. Wow. I wouldn't have been ready when Eon was only 5 weeks old. I bet this year you will love it!

  3. For some reason I have had a sad week too. Hormones or something... But anyway... you know I never get down about River having Down Syndrome, but the things that scare me and drop me to my knees are the 3 things that in my mind could take him from me or change who he is: Cancer, Autism, and early Alzheimers. The thought of losing this charming little person in any way causes me to sob uncontrollably. But I get ahold of my self after a few moments of crying out to God when he tells me that he is in control, and its not happening today, and TODAY River is wonderful. And should all the what ifs my mind can come up with actually happen God will still be in control!
    Lucky you for getting to go to that confrence. And {{HUGS}}...

  4. Hi Penny! Erin here! first time at your blog and as I read through this post I totally am feeling your honesty, I guess we all go there once and a while. I was recently (a few months ago) at TJ Maxx with my Grady(now 4 months) and an adult man with down syndrome (late 40's) shuffled behind his mother staring at the lights the whole time never whispering a word, mind you I had my three week old son with with Down Syndrome with me at the time...I freaked, I ran to the dressing room and sobbed, I couldn;t even muster up a blog post that night about it, I was in distress. But as I as in that dressing room, loathing I was so comforted by the Lord and his understandin, I said a prayer and out I went.... I regrouped and it took a while for me to come down from the emotional wreck I had. I wonder if he had all the therapies my Grady does now or if their was something else greater that just DS working inside of him. I will never know, but that experience made me a whole lot more prepared for the future emotionally. I got through it and over it and God is Good. I really wanted to go and hug him .