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Taking Walks & Life Lessons

With the unrelenting, blistering, scorching heat in Arizona, we haven't had many opportunities to just go outside and take a walk in the past 4 months. It's just no fun at all when you start sweating the second you walk out the door. We had a special treat on Friday though. It was only about 100 degrees, overcast, and breezy. PERFECT conditions for taking a walk. Not only that, but there was a little bit of thunder here and there. Raya and I were home alone for the afternoon so I put shoes on her and we went for a walk. I should mention that her feeding pump had malfunctioned overnight and failed to give her ANY of her feed, so she was tethered to her backpack all day long to make up for it. I think the feeding pump does that to us every so often to keep us humble and remind us how good we have it right now. :)
(As a side note, she's been keeping her hands fisted a lot more lately. Not sure why.)
Raya didn't seem to mind at all though, she just wanted to go outside. She jabbered away as we walked down the sidewalk toward the park. Every few steps, she would stop to pick up rocks or point to the direction of sounds that she heard. She was SO happy to be outside! I ended up having to hold her hand to keep her moving forward because there were so many distractions along the way. The last two houses on the street have different curbing and driveways than the rest. They slope down to the street much more steeply than all the rest, and Raya often has a very difficult time coping with the way that walking across the slope throws off her balance. The first time we ever tried to walk to the park, she got a few steps into the first driveway, stopped in her tracks, panicked, and sat down. She has come a long way since then but I never know how she'll do on any given day. This time, she did well but I could tell she was really concentrating. Her steps changed, she squeezed my finger, she stopped talking, and we moved a little slower. We got past the driveways and made it to the park. I could tell she was really proud of herself. We stood on the sidewalk for a couple minutes just looking around. She heard a noise (I don't remember what it was now, maybe thunder or a dog barking??) and started making the famous "O" face:

As most things do with Raya, her curiosity about the loud noise only lasted a few seconds and then she was on to something else. I let her choose where she would go next, thinking that she'd keep walking along the sidewalk, but she didn't. She opted for the grassy drainage area on the other side. I stood back and watched her as she tried to decide if she was going to walk down the steep slope or not.
 I wish I could have heard what was going on in her head as she contemplated whether she could do it or not. I asked her what she was doing and she turned, smiled at me, and started making her way down the hill.
She got to the bottom and giggled while she spun in circles, yelling, "WEEEEEEEEE!" Then she picked up a couple of pine cones and stumbled her way back up the hill to the sidewalk. We felt a couple raindrops (and a couple mosquito bites) and decided to head for home before a downpour started (no rain on my camera, please! :). 
She carried the poky pinecones all the way home with her. Since she was holding them, she didn't have room for my finger in her hand and I wondered how she would do on the driveways. Her pace slowed and she looked intently at the ground as she walked across, but she made it.
 She was all smiles by the time we got home:
I was proud of her, just like I am anytime she does something that's hard for her.

On Saturday, we had the opportunity to take another "walk". This time, it was the annual Walk for Down Syndrome. My best friend's daughter (who happens to be my daughter's best friend) is a spunky 8 year old girl with Down Syndrome and they have been a huge blessing in the lives of my family.

Skylar & Brooke

We met them a little over 4 years ago and became instant friends. I will be the first to admit that before we started spending a lot of time with them, I wasn't really sure how to act around people with special needs. I never really knew any growing up. I've learned so much from them and I'm so grateful for the influence that they have had on all of us. This is the 3rd year that my family has participated in the event (last year Raya and I were at the hospital so the kids went without us) and we LOVE it! The kids have been so excited for it all week. I think the best word to describe the event is joyful. You can't be around all of those special people without feeling full of joy and love for them.
 For the first hour, we ran around and played carnival games and played in bounce houses. Then it was time for the "walk" part. :) There was a huge crowd that moved very slowly, and it just so happened that we ended up stopping right next to the huge, very loud speaker that was blasting music. To most of us it was an annoyance but Skylar has a really hard time with loud noise. Ashtyn always has too. First we saw this:
 And that turned into this: (which was the point that Brooke and I both got tears in our eyes)
This picture is such a good representation of their friendship. They have always protected each other, and it completely goes both ways. I'm pretty sure there was at least one trip to the principal's office in kindergarten because Skylar didn't like the way someone was treating Ashtyn. :) Seeing them together just makes me happy.

Once we moved ahead a little bit, the girls felt better and then the dancing started. :) I think that's my favorite part of the DS walk. Some of those kids have some pretty slick dance moves! :) Ever hear the saying, "Dance like nobody's watching"? Yep, that's exactly what they do. :)
We finally made it through the balloon arch and took our lap around the ball field. Well, not really. I got sidetracked at a booth. It was a respite care place, which was extremely convenient since the place I've been trying to get respite lined up through never returns my phone calls. One more reason I was glad we went! :)

After the walking was over, we had some yummy treats (Blue Bell ice cream, Jamba Juice, candy, etc.) and played on the grass. Then there was the 5 minutes that Raya completely disappeared immediately after being let out of the stroller. Oddly, I felt no panic but more like, oh crap, I don't even know where to START looking for her! She walked over to the giant inflatable obstacle course and I found her just as happy as could be. :)

Skylar and Raya shared some chips. Well, Raya fed Skylar some chips, anyway. :)

Here's our good lookin' crew:

And here are our beautiful girls:
Often when I see these two walking together holding hands, and especially at the Walk for Down Syndrome, the words to a church song from the Children's Songbook come to my mind. These words have taken on a whole new meaning for me since Raya came along. I will never forget what it felt like the first time I realized someone was staring at her back when she had a feeding tube taped to her face and an orthotic helmet on her head. It was almost like someone had punched me in the stomach and I remember hoping that by the time she was old enough to realize that people were staring at her, the reasons for the stares would be gone. This song is simple but powerful.

If you don't walk as most people do,
Some people walk away from you,
But I won't! I won't!

If you don't talk as most people do,
Some people talk and laugh at you.
But I won't! I won't!

I'll walk with you.
I'll talk with you.
That's how I'll show my love
for you.

Jesus walked away from none.
He gave his love to everyone.
So I will! I will!

Jesus blessed all he could see.
Then turned and said 'Come follow me'
And I will! I will!

I'll walk with you.
I'll talk with you.
That's how I'll show my love
for you.

Cole, Skylar & Ashtyn at the 2009 Buddy Walk

*Note: to hear the song, click on the title link. Then at the upper left corner of the page that opens, select the "words and music" option and click the play button.


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