Monthly Archives: September 2008

Wordless Wednesday

Foggy Day

Foggy Day



Filed under Everyday stuff, Special Exposure/Wordless Wednesday

CdLS Blog Challenge–Public Scrutiny

This week’s CdLS-KIDS Blog Challenge is:

We have all dealt with public scrutiny when out and about with our child
with CdLS. Tell us about your most memorable experience (good, bad, funny, or
downright strange).

I’ve had many brushes with public scrutiny over the 12 years Baylee’s been in our lives. Some of it bad, some funny and many good experiences as well. Most of the time I feel like I’m somewhat “seasoned” as a CdLS parent. I think 12 years of “experience” counts for something and for the most part I’ve got pretty tough skin. But sometimes an experience with a stranger who is a clod really gets the best of me and I chastise myself for not being able to handle it better.

Not too long ago I wrote about an unnerving scrutiny experience here.

Today, though, I’d like to focus on the acts of kindness that we have been on the receiving end of because of Baylee. Like the time a sweet little girl came up to us in a restaurant and wanted to give Baylee a bracelet….a bracelet that she took right off her wrist and handed to Baylee. She thought Baylee might like to have it. How many little girls want to give up their pretty jewelry? At a Rascal Flatts concert we were heading to our seats and a man in a cowboy hat ran up to us and said “Ma’am, I’d like you to have this for your daughter”. It was a guitar pick. We later saw that man up on stage….he was the band’s fiddle player. Then there was the time Baylee threw her DynaMyte communication device in the sink and “washed” it. It was beyond repair. A family in our CdLS group contacted me and said they had one laying around their daughter didn’t need, and they express mailed it to me. Baylee used it for a long time…and fortunately never gave that one a bath! And there’s a neighbor who gave Baylee a practically new beautiful daybed they didn’t need anymore….and the former classmate who brings Baylee carefully chosen birthday gifts and runs out of her house to say hi to Baylee whenever we walk by.

There’s also all the kind people who have come into her life professionally, but still want to be a part of her life even though they are no longer involved with her on a professional basis. And our neighborhood who watched out for Baylee when she used to be a “wanderer” and could climb fences. I’d be frantically searching for her and someone would drop what they were doing and walk her back home. Thankfully we are past that stage!

And lastly, there’s all the new friends we’ve made all over the world that are part of our CdLS family. We’d know none of them if it weren’t for Baylee.

Every time I have a negative experience, I try to think of all the good people in Baylee’s life who take the time to know her and love her unconditionally. I also think about the strangers who wanted to take the time to make Baylee’s day a little bit better. It cancels out all the bad experiences without fail.


Filed under CdLS-KIDS Blog Challenges

Well, we tried…..

Today was our last day at the Farmer’s Market. We’ve decided to give up our last Saturday next month because it’s the weekend before Dave’s new store opens up and he feels he wants to devote all his energy into the store opening.

The weather was gorgeous and there was no Husker football game to scare away the customers. We were poised to do good sales today.

Unfortunately, we didn’t go out at the market with a bang. Our kettle unit broke down and we didn’t get to pop a single kernel. No popcorn for anyone. Our regulars were disappointed, but no one as disappointed as our family! Even the boys were upset. Basically we got up early, set everything up (which is really a huge undertaking), then when Dave went to light the pilot light, we found our gas line clogged up. We were never able to unclog it. We need to buy a whole new line. I guess after 7 years of use it doesn’t owe us anything.

So sadly we bid our customers and fellow vendors good bye for the season. We will miss our lively and charming Farmer’s Market. I hope May comes quickly….though it seems it always does. Heck, it will be the holidays before we know it, and the first four months of the year will frigidly fly by….before we know it, we’ll be setting up our tent in our familiar spot for our 8th season.

The good news was that we were able to shop the market bit and visit other vendors. When we are selling popcorn we almost NEVER get a chance to step away. We even picked up some late season sweet corn that was still delicious. We got some home grown apples and a watermelon. We even took some time to tour one of the $475k town homes that overlook our historic Haymarket. It would be an amazing place to live….too bad it’s out of our price range! I think Baylee would probably climb off the roof top patio anyway, so I’ll have to take it off our wish list when we win the Powerball (but I guess one would actually have to play it to win, though….).

On another note, I took another job. In a different lifetime I worked full time, but left my job when Baylee was born and stayed home for 8 years. I didn’t feel like I could ever put her in daycare with her special needs. I thought I’d never go back full time, but I decided that I would go help Dave open his department. I never worked in his department before, so it should be interesting. Lukas is also transferring from his store and will work for his Dad as well. We figured it was just easier having Dave write the schedule for all of us ensuring that one of us is always with Baylee. I guess there’s some perks when you sleep with the manager or you are his kid? I’m still keeping my day job, so I’ll be working nights. The adjustment will probably be hard, but it will become routine sooner or later. The store is incredible and Dave’s department is making him positively giddy with all its shiny new equipment. October 7th will be like Christmas Day to him. For me–just another paycheck and likely a way to meet new people and make new friends, but in a weird way it’s exciting to be part of this event, even if it is just a great big, fancy grocery store.

At the Farmers Market

At the Farmer's Market

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Filed under Everyday stuff

Simple Pleasures in Life–CdLS Blog Challenge

This week the CdLS-KIDS Blog Challenge is to list our simple pleasures in life.

  • Reading the paper on a Sunday morning with a cup of coffee
  • Runner’s high after a early morning run on a cool morning
  • A hug from my DH
  • A frosty mug of Root Beer
  • A new purse
  • The smell of bread baking
  • The smell and color of a blooming Iris

Heidi, from God’s Grace In Practice asks if we think our pleasures are drawn from more simple things now that we have a children with special needs? I’m not so sure that’s the case for me. I think the enjoyment of simple things has come from my own growth and maturity (if you consider 41 “mature”, that is!). I’m a very different person than I was at 18, 20 or even 30. My values are different and much simpler. Life is so much more than the accumulation of things. I also think living on a budget due to my desire to stay home with my kids when they were younger, and then living our “debt-free journey” has made us more aware of simple pleasures. We still have the debt-free goal in sight, though, so living a cash only life forces one to put more value on the things that money cannot buy. I think I’d be in this same spot with our without Baylee’s special needs in our life. I think discovering the simple things is a part of the process of maturing.

It’s a good thing.


Filed under CdLS-KIDS Blog Challenges, Cornelia de Lange Syndrome

Wordless Wednesday!

Lukas & his friend Ashley

Lukas & his friend Ashley

My baby is 16. He gets his license in 16 days. 16 DAYS.


Filed under Special Exposure/Wordless Wednesday

A touching video commentary

I was so touched by Glenn Beck’s words, that I had to share. I’m looking forward to Gov. Palin’s speech tonight.


Filed under Everyday stuff

Special Exposure/Wordless Wednesday

5 Minutes for Special Needs

A boy and his ball

A boy and his ball

Since I seem to devote most Wordless Wednesday photos to Baylee, today I thought I’d feature Colton. His 11th birthday is coming up, and he got his present–a bowling ball–a little early since his league starts Saturday. Who knew they scented bowling balls now? His ball smells like limes.


Filed under Special Exposure/Wordless Wednesday