Wednesday, October 12, 2011

Konnor's Birth in Pictures

My awesome photographer (and friend) captured these images the day of Konnor's birth. The beauty of the pictures, the way she captured the fear, anticipation, relief and joy in my eyes through the lense of her camera will be something I can never thank her enough for.

Please visit her at if you are in the Kansas City area and need an awesome photographer.

I can't seem to get the picture show below to work. If it doesn't for you, go here.

Monday, October 3, 2011

Down the Road

I do not think that I can adequately express what it feels like.

To breathe.

To just enjoy.

To not have a cloud draped delicately over our heads.

Four years ago today we sat in a room at the children's hospital with a team of doctors, our parents and a Carousel nurse.

We were told of the "couldn't"s, we were told of the "wouldn't"s.

We were told that it was ok if we chose to do some things that we gratefully have never had to seriously consider.

It was Bryan's birthday. We left our hospital "home" to "celebrate" with pizza that night returning to a world of unknowns that evening.

We still have many unknowns, but also many healed scars.

Today is Bryan's birthday again.

But tonight I will go home from my first day of work back from maternity leave and hug my four year old and her brand new 6 week old brother.

And I will really celebrate.

Sunday, August 21, 2011

More to come

But for now....

Monday, August 15, 2011


Obviously this blog has been terribly neglected over the last several months. You all are long overdue for an update.

There has however been a reason...(which those of you in real life know)

Kelsey is set to be a big sister any day now.
My due date has come and gone.

She is super excited about being a "helper" and laughs when we talk about baby brother crying "wa wa wa."

I think this will be great for her, though an adjustment for all of us.

Here is a video of her "playing" with Baby Brother the other day.

Any prayers for a positive, "normal" labor and delivery experience would be much appreciated.

Saturday, February 26, 2011

Bridging two worlds

I have made the intentional decision since Kelsey was a baby to give her as normal of an experience as possible. I am sure that initially it was my intention to somehow defy all odds and "cure" her of all of her challenges by putting enough effort in.

It has slowly evolved into a philosophy of acceptance of Kelsey's limitations, but desire that she be challenged, and challenge herself, to not stay at the level of low expectation that some might have for others in her position, but instead grow into a independent, productive girl (and someday, lady).

These goals have brought me to situations that I might otherwise like to avoid.

Honestly, it hurts to see your child struggle to do things that should come easily to them, but it is an entirely other level to put your child in with her typical peers and to see first hand everything she should be doing, saying, being.

But ultimately it does no one any good to pretend that the "typically developing" world does not exist and choose to bury your head in the "look at how good she is doing compared to how she could be" special needs world.

We take Kelsey everywhere with us. We do not not go places because of her special needs. In fact, we probably seek out more sensory and fun activities than we might otherwise do.

In November, Kelsey took the biggest step thus far in pushing into the world of the "typicals."

Kelsey attends a community preschool at a local church with the support of school district staff and an incredibly loving teacher, director, and staff there.

It has been the most heartwarming and, at times, heartbreaking thing we have done for Kelsey.

It was not the easy path. It was not the "normal" placement for someone with the physical disabilities Kelsey has.

Yet it is the only path that I felt right for my girl.

(we are blessed to be able to continue services at her private special needs school so we did not have to sacrifice therapy for placement here)

Kelsey loves to go to preschool. The kids are absolutely wonderful together. They were quick to accept Kelsey and call her their friend.

Kelsey has blossomed there. She is so talkative about it. That is the place that she most often makes her walker "go" all on her own. She is attentive and excited about going and being there.

She has been to a birthday party of a classmae. She has been called "my best friend Kelsey that God sent to me." Her classmates help her motor through the actions to songs. They get right up close to her to talk to her and engage her. They help her "catch" the ball and wait for her to drop it ("throw") it back to them.

Kelsey has done all of this on her own. It is amazing to me. After facilitating all of her interactions (mostly adults) for the first three years of her life, here is my spunky, opinionated, nonverbal daughter developing relationships with "typical" peers with help from no one.

Last night I went to a girls night out event at this church and spoke briefly to the mom of a boy in Kelsey's class. She was so nice to me. She commented on how well Kelsey was doing in her walker. She said it was so good for the kids to have Kelsey there because of the compassion for others and kindness it helps them to learn.

I know this is true.

I know that if I was in this mom's place with my son, I would feel the same. I know that diversity does make us all better for having experienced it. I guess I just wish it wasn't my little girl that was the carrier of the message.

I also know, in some ways, it is an honor for Kelsey to be the carrier of that message.

Kelsey is so close to being just another kid and yet in some ways so far.

I yearn for the time that Kelsey will be able to fully verbally (or with a communication device) be able to express all that she is.

The fun parts, the sassy parts, how smart she is...

That she will be seen for who she is and not the equipment she uses.

That she will be seen for everything she brings to the table in spite of her disability and not because of it.