Monday, June 14, 2010

DS Walk and growth

We attended our 1st "Step up for Down Syndrome Walk" this past Sunday here in St. Louis. There was a huge turnout...about 5000 I think.   I was a little anxious before we arrived not knowing what to expect.  I anticipated that it might overwhelm me and that parts of it might be difficult.  I am fairly easy on myself and understand that as Jack ages there will be new stages of acceptance and growth for Michael and me.  So, this was one more step and one more area of growth for me.

It was quite possibly the hottest day yet in St. the 90s and the humidity was impossible.

We greased Jack up with sunscreen, brought tons of water and hats and got ready for a hot morning.
Our team started to arrive little by little from 9:30 am on.  We were thrilled that so many teachers from Jack's daycare came to support him and our family:
Katie (Jack's PT) and her husband, Doug, also came:
Our neighbors and good friends, the Gregory's (Jamie and Eric, and their 2 children Lily and Will) came as well:

Jack and Lily
Will above, and Jamie and Lily walking here.

We started our walk
And then after walking for about 10-15 minutes, we decided to take a short cut back as the kids were getting hungry (and the adults too!:) )!
We cut through the grass to head back to shaded shelter and hopefully some ice cold water!  They had tons of things for kids to do..jumpy things, slides, face painting, tile painting, etc.  We did a few with Jack, but honestly I was a little overwhelmed and just wanted to sit down to take it all in and hold our baby.

Jack took a little nap..poor thing was so hot.  We ended up removing all his clothes except for his diaper by the time we left!

And here are some of Jack and Katie and Doug and Jack:
And there's nothing like a hot dog and chips to replenish the worn out body and soul:
 As we sat there eating our hot dogs and re-hydrating, I couldn't help but look around to all the families.  So many people were there who love someone who has DS.  So many families were there who have family members with DS.  And so many people were there who have DS.  That last one was the hardest.  I was so happy to see so many other faces like our Jack's, but I would be lying if I said it was easy. I found myself quietly shedding tears by the time we left.  I was crying because I was suddenly scared of the unknown.  What will Jack be like when is 10 years old, 13, 18, etc.  Will he be verbal?  Will he be able to hold a conversation?  Will he be happy? Will he be physically active?  And worse...will he girl crazy?  I don't know how I will cope with that one!!  I also worry about how people will treat Jack.  I have realized in the past year that there are just some rude, unkind people in the world.  I wish I could shelter Jack from all the bad out there.  But I have a feeling that he will handle it better than me and that we will learn tons from him about love.

So why was it hard?  I think seeing the wide spectrum of abilities and disabilities at the walk left me somewhat sad and scared.  I had to stop and remind myself of true happiness and joy and worth.  It's not in what you do or what you look like, but how you love and are loved.  That's what I really want for Jack. I just want him to be loved and to know it and to live in the freedom that it brings. The hard part for me occasionally is the not-knowing things; the stuff that everyone else looks at or judges you  by.  I hope one day I no longer worry about those things. And I wish, right now, it didn't matter.  I prayed this morning on my way to work that we would be prepared for whatever lies ahead and that our family would just grow more in love through the years.  I know next year will be easier and that this is a process.  I won't be hard on myself for having a hard day...those are becoming far and few between as time goes on.  I know other parents/families must feel these same things, right?  I can't be alone in these emotions.  So, I'll take my emotions and move forward...loving our wonderful, precious son.

Thank you TEAM Jack for coming out and celebrating Jack's life!  We are so grateful for his life and we look forward to walking again next year.

My parents come into town this week as we will be celebrating Jack's 1st Birthday!  I can't wait to see them and to celebrate once again.  WE LOVE YOU JACK!  You have changed our hearts and lives forever and have touched so many. We truly love you.


  1. Brandi-
    I know that I don't know you very well, but after reading your post, I was crying right there with you. I can't imagine how difficult it must be on you sometimes. When I look at little Jack's face, I just smile every time. He must bring you and Michael such joy. At the same time though, I completely understand why you feel the things that you do and have so many questions about his future. One thing we do know for sure is that God is a great God, and he knows everything that Jack is going to do or not do in his life already. I hope that you will be able to trust in Him when you are feeling down or hurt by those "mean people" in the world. Know that I am not one of them. I love that little guy and I've never even met him. (I know, I sound weird, but it's true.) I want you to know that I'm praying for you and Michael, and for Jack. I hope that you enjoy the celebration of his first birthday. Whoo hoo Jack is 1!

  2. So cool, glad you all had fun despite the heat. I love the pic of Jack sleeping. We went to our first walk last year when Lucas was 5 months and we left early because it was a little overwhelming. I have the same fears but I am hoping that by the time Lucas is 10 or 15 or whatever, that I'll be ready for whatever comes our way.

  3. I would like to go to our first walk this year, but am afraid it will be very overwhelming too. I will admit I'm afraid for the future. There are so many unknowns and seeing adults with Ds bring this to the forefront. I also know it's something I need to do...