Tuesday, September 28, 2010

Walking, and signing, and speaking, oh my!

Eon has been taking steps for months, now, and I kept waiting for him to just "take off" walking. It's funny to me that it hasn't happened that way at all. Gradually, he has just taken more and more steps until, now, he walks more than he crawls. He's still unstable and falls a lot, but he's very determined and always just stands back up and keeps plugging along. Very cute! It still surprises me when I catch sight of him out of the corner of my eye and he's walking by. He'll be 20-months-old tomorrow, so it's a bit earlier than I expected, too.

I've mentioned before his tendency to use signs and words for awhile and then just kind of lose them. It drives me crazy. I've been encouraged by other parents that they will come back and we're finally seeing that it's true. He hasn't used the sign for "daddy" for the longest time. Sunday, he and I stayed home from church as he'd been vomiting in the middle of the night (fun, fun). He was sitting on my bed with me watching videos on the laptop, when he reached over and patted me to get my attention. Then, he signed, "Daddy", and looked to Shawn's side of the bed. I responded, "Daddy's at church." He then waved "bye-bye" and went back to watching his video. I was thrilled! That was the first abstract communication that we've had...something beyond his wants and needs.

He's starting to do that more and more. The other day, his 3yo brother, Zak, was yelling at him for wrecking up his train track. Eon scrunched up his face and signed, "Stop!" Cracked me up! The one that really made me laugh was when I was hollering up the stairs for Ben. Eon walked over the the baby gate, stretched his arm up the stairs, and started signing "Ben" real emphatically, like he was yelling for him, too! LOL!

He uses some words or word approximations, too. My favorite new one is "up". He used to just whisper the "p" sound for that. Now, he loudly says, "glup-a-glup-a-glup-a" when he wants up. I don't know if that's what he thinks we sound like, but I think it's too cute.

Friday, September 24, 2010


I've been thinking a lot about community, lately. Our Buddy Walk for Down syndrome is coming up in a month. I really want to have a big team. I have visions of a mass of Simeon's Sidekicks all in matching t-shirts smiling and enjoying the day together. I was very disappointed when I learned of a few scheduling conflicts that day which could (and probably will) impact the size of our team...like, over-the-top disappointed.

I had to do some soul-searching to figure out why this is so important to me. There is the usual (and acceptable) desire to expose more people to the beauty of Down syndrome. There's the desire to get more people to advocate for our kids. And then there is the desire to have more people enter our world, to really see what our life has come to be about.

I have to be honest with myself and admit that part of it is this intense need to have Eon be beyond accepted and actually celebrated...to be seen and known for who he really is. I'm sure there is a selfish need for me to be accepted, too.

But, I want to go back to my "have more people enter our world" reason. Our world. I want to invite people into our world, but I realize that I am very reluctant to enter theirs. Other people in our circle have walks for things that are important to them, but I never make an effort to participate. They have children with various diagnoses that I have never bothered to learn much about. Their kids are involved in all kinds of activities that I've never shown an interest in.

My friend, Nicki, is my new hero. She brought her kids to the Buddy Walk with us last year (When we totally misnamed our team, Simeon's Trailblazers, only to be so far behind we had to take a shortcut to catch up). This year, she was asking me when the Buddy Walk was a few months ago to make sure she got it on her calendar and now, she has her own fundraising page for it. I have been tremendously blessed and humbled by her enthusiasm.

Nicki has a huge sense of community that I am lacking. When the youth at church have any kind of game or performance, she makes an effort to be there. This inclination to look beyond "her world" has really caught my attention. What better way to foster community than to go beyond inviting people to join my world and attempt to join theirs, too?

I'm learning much from her. The other day on facebook, a mutual friend posted that her young son didn't get the part in the Christmas play he wanted and was disappointed, even though he still got a part. My thought was, "Oh, bummer." Nicki responded, "When and where? Because our family would love to be there." Because of her inspiration, I echoed the sentiment and am looking forward to it.

I do hope people will join our team. I'm sure it will be a great day! But I am also looking for ways to enter the world of those around me.

Saturday, September 18, 2010

The Future

As a busy mom of many, I have many preferences I don't often indulge in. For example, I prefer gourmet coffee and cheesecake at a quiet place with leather couches, but I usually end up with chocolate softserve at the walk-up place near the creek the kids love. I prefer downtown hotels with 5-star amenities, but often succumb to the great outdoors in our tiny camper. I prefer live theater and concerts, but am often found at the $1 movie place with the sticky floor watching the not-so-latest kid flick.

For most moms, substituting kid-friendly entertainment for our own preferences is just part of being a mom. Most moms know that this season of life is only temporary. Someday, their nest will be empty and they can return to the things they enjoy. They may long for the day when quiet coffee and theater tickets are the norm, but they know it's coming.

The moms of kids with special needs have no such assurance. While we are doing everything we can to ensure our child's future independence, we know that there are no guarantees. Our nests may never empty. We are possibly on a lifelong parenting journey without an earthly end.

The more I think about this, the less certain I am that it's a negative thing. I've grown to really like chocolate softserve, $1 movies, and (gasp!) even camping! But more than that is the complete realization that my life is not my own. As a follower of Christ, I have given up those rights. Any plans I have for the future are just a vapor and can vanish at any moment. My desire should be to simply do what He's placed right in front of me to do.

I have always struggled with what I call "when we, then we". For example, when we have this baby, then we can start the new housekeeping plan. When we have mostly older kids, then we can adopt. When we have an empty nest, then we can travel more. Do you see how this can be a trap? Always longing for the future, but never quite content in the here and now?

Having Eon in our lives is forcing me to hold my plans more loosely, to look to the future with anticipation instead of certainty, and to enjoy my reality as it is right now. It may not be cheesecake and coffee, but I'm making the most of it!

Wednesday, September 15, 2010

Deciding Not to Screen for Down Syndrome

Deciding Not to Screen for Down Syndrome
This is an excellent article that succinctly explains my reasons for declining genetic screenings this pregnancy. Unfortunately, the comments took their predictable route. Sigh. I've blogged about this phenomenon before. It's disheartening to see how ignorant and angry the world continues to be.

Wednesday, September 8, 2010


I try not to buck the system too much, really. I am a homeschool mom, though, so that is an area where we are not following the norm. Of course, having seven kids isn't exactly normal, either. For that matter, neither is encouraging one's husband to leave his steady job of 15 years with great benefits to start his own business. Hmmmmm. Maybe I am a bit of a rebel.

Anyway, reading so many blogs and so many posts about sending our 3-year-olds to preschool, many of them on a bus, has caused me to pause and ponder.

Is this really the best thing for Eon?

Who decided that it is? I think I need to see some research to back it up. I know that it will be easier to get him therapies if he is in preschool and I've heard some wonderful things about the program in our area, but, I've heard those things from people who expect all their children to attend public school, anyway.

In all the posts and musings about this, the options revolve around which type of preschool, how many days, or what type of transportation to utilize. I have not read anyone question even attending preschool.

I suppose, since he's only 19-months, I have some time to explore this issue, but time seems to be flying by at an alarming rate. If anyone has any research or input on this, I would love to hear it!