Welcome

Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.







This is about our journey and the [EXTRA]ordinary people we meet along the way.







Monday, July 30, 2012

Wyatt CRAWLS!

This past week has been a flurry of getting our house put back together after it being ignored for the three years I was in graduate school. It's been crazy. I have laundry up to my EARS. One big thing on my to-do list, along with cleaning and organizing, purging and planning, was to finally get Wyatt into his own room. He has been sleeping in our bedroom since he was born.

After his birth, we started to build his room. Literally. It was concrete floors with no walls as it was the unfinished part of our basement. We contracted out what we could and did some of it ourselves. The last part to finish was to put on a final coat of paint on the walls and paint the baseboards. It sat like that for months until this week. We still need carpet, but finances ruled and we decided to wait a few months to do that until my paychecks are regular again. So we pulled together carpet swatches from our old carpet, from my Mom and from Josh's sister to cover exposed concrete. I was so excited when it was pulled together enough to dis-assemble, the re-assemble his crib into his room. This is his second night there and he's doing great!

I thought that would be the big excitement for the week. But as I was painting and organizing, something else happened. Wyatt decided to crawl. I mean REALLY CRAWL! Up until now he has been army crawling for about 4 months. He is a fast little bugger doing it, too. He has not, however, four-point crawled. But a few weeks ago, I has him in the grass in our front yard and he did this funny little four-point crawl. I was so excited. So I started having him practice. But he would do it for a few rotations then stop and drop to the army position. He would NOT do it inside on the regular floor, though. Hmmph... I tried to mimic and model it for him. With Eden by my side we would crawl around on all fours in our living room trying to get him to do it. I'm sure we looked ridiculous. He would just laugh. Then army crawl. Grrrrr.

Then this week, it happened! He leaned over, on all fours and crawled right in the living room. He is now doing it all across our living room and was even nice enough to demonstrate it for our fantastic Physical Therapist today. It's a great feeling to see him crawling around on the floor like a big boy.

We had the DSAGC Family Picnic this week, too. And while I was there, I was talking to some [EXTRA]ordinary friends of mine, Stephanie and John. They also have a boy with Down syndrome who is 7 months old. Stephanie said that she tought we worry too much about when things would happen. John also chimed in. He said, "you know, we focus on that too much sometimes. I mean, I've never been to a job interview where they've asked me 'what age did you start crawling? Or when did you first roll over?'"

HOW TRUE!?!?

 I agree. sometimes we over do it and worry about when our kids are going to do things. Then they start doing things when we least expect it. Yes, we need to encourage our children with therapy and a little extra attention sometimes, but mostly, we just need to let them guide their own path.

This week, I was excited about his room, but Wyatt had a special surprise in mind for us instead!

Here is Wyatt doing his four point crawling in the grass. I have yet to get it on video inside. (Hope you can see it! My computer needs major updating!)

video

Monday, July 16, 2012

Watching Life's Meaning and Purpose Unfold

God has made this life a true adventure. Sometimes there are very fun parts, sometimes very scary parts, sometimes there are happy times and unfortunately there are sad times, too.

What I think what we often search for, is in meaning in it all. We do not have God's vast wisdom as to his big plan, so that feels very dwarfing sometimes. And sometimes you are downright angry about the things that happen in your life.

I have two [EXTRA]ordinary friends from college named Molly and Kendrick. I met them somewhere around 1997-1998 when I was at Anderson University. Molly was in my sorority (which was more like a social/service club) and Kendrick was good friends with a group I hung around. I liked both of them from the start. They are, at their core, beautiful people. Happy, faithful, often quiet at times (which was probably a balance to my un-quietness, haha!). They were laid back but I automatically held a connection with them. Molly is strong, not afriad to share her opinion or tell it like it is. Kendrick is strong also, but in a different way. A quiet confidence that fills the room when he enters. As we expereinced some really, really fun times together. We also experienced some tough times, as well. Like when we lost Brian,  a very close friend (and Kendrick's one time roommate) at the age of 23 in a fire. I'll never forget walking onto our old hang out and hugging Kendrick after Brian died. It was healing, and I will never forget it.

Molly and Kendrick married after college, so their relationship has progressed throughout the years. I have watched it progress from the outside. As time and space passed, our friendship reduced itself to primarily a Facebook connection. They had two beautiful children, with some typical struggles of family life, to my knowledge. I enjoyed catching up with Molly on her page and watching the kids grow.

Fast forward to December 2011. Molly posted that her daughter was going in for removal of a tumor. cancer. That big, giant word.

CANCER. 

I was heart broken for them. I wanted to do something, but my Facebook posts about praying just didn't seem to suffice. But then reports were positive. Whew! Things were looking up. Her son had surgery to repair a twisted spinal chord that was causing him issues. It seemed like things were heading toward the "norm."

But then we had the post. Izzy's cancer was back. It was back with a vengeance. It was explained that it was a neuroblastoma. Stage Four. My heart ached. I cried tears of pain and sorrow for them. I cried out to God begging Him to heal her. When I found out they were coming to Cincinnati from Indianapolis for treatment, I was almost excited. I get to see my friends! (great) $%*&&*^@%(& I don't want to see them for this reason.

When I finally met with Molly at Cincinnati Children's Hospital, it was wonderful. Molly has since shaved her head for her daughter. She ROCKS IT OUT. We quickly got to work chatting and catching up on our lives. We talked about our kids. About all the really stupid things people say to us about kids with special needs. And about our understanding that people just don't understand what to say if they've never experienced a major change in expectations for their childrens' lives.

I have mass love for this woman, for her husband and her family. She embodies strength that not many people could ever even hope to have. She is [EXTRA]ordinary, as well is Kendrick and her children.

I encourage you to follow their story on her blog (click HERE) or on Facebook (click HERE).

Pray for this family. Love this family. They are amazing people and their daughter is a fighter.

If you are interested in donating a financial contribution, please email me at bekah47@hotmail.com and I will make sure the funds are directed to them.

Life is not what you expected sometimes. But sometimes, regardless of how much it sucks, you get to watch a purpose unfold. Izzy's meaning and purpose is to not have cancer, but maybe, just maybe it's to embody strength and to unite people through her beauty and the amazing faith of her parents.

God is good. God is faithful.


Tuesday, July 3, 2012

That Never Really Entered My Mind...


For months last year, as we were working through what having a child with Down syndrome meant, we were very micro focused. It's hard to see the forest for the tree sometimes. And we were definitely seeing the trees only. Sometimes only one tree at a time. For a bit, it seemed like life was never going to be the same. There are things, though, that have happened recently that never really entered my mind to remind me that our life is quite often the same as it would have been with or without Down syndrome.

The big thing that I encountered recently is.....VACATION! I am blessed to have a really [EXTRA]ordinary set of in-laws. Although my husband's parents are no longer with us, he has some wonderful Aunts and Uncles who are a big part of our lives. And he has fabulous sisters. They are funny, caring, compassionate and they really love the kids. So this past week was family vacation. We participated first in the Scheerer Family Reunion in Atlanta and then we went to North Carolina to a cabin in the woods for a week. (Where I had intended on blogging, but we had no wireless access or cell service). We had a really wonderful time with everyone (save for a few panicked moments from me about scheduling and packing!).

We had a similar vacation in the Smoky Mountains when Eden was about 19 months old, just a few months older than what Wyatt is now.

As we were getting ready to go hiking one afternoon, Josh turned to me to say, "When I think about where Eden was when we took her on vacation and where Wyatt is now, I really see a difference."

I acknowledged his moment of awareness of Wyatt's delays. "Yes," I said and continued, "but Eden was 3 months older and alot can happen in those 3 months!"

"True," he answered matter-of-factly.

That conversation really got me thinking. Yes, Wyatt has delays. BUT - when planning this vacation, Down syndrome never really entered my mind. I mean, it was just a given: Wyatt was going with us. We didn't have to make any special arrangements, make any special food (other than you would have to modify slightly for any 16 month old), and we didn't worry about the fact that he's not walking. We just went right along like everything was completely the same as it was when we took Eden on that previous vacation. I did nothing different to prepare.

We were able to do lots of great things, like go to the Georgia Aquarium, go hiking (with Wyatt in the same hiking backpack we used for Eden a few years ago), go gem mining, relax, make Clover necklaces, go into town for dinner, make s'mores and generally have a good time. See below for some pictures from our first family vacation as a family of four!


I know it sounds so simple, but this vacation is a case where things that never really entered my mind have made me FULLY aware that Down syndrome is not an interruption to our lives. Sometimes it takes some alternative routes, and sometimes things take a little longer or require a little more effort, but it doesn't interrupt the natural flow of our lives. We can do all the [EXTRA]ordinary things with our lives that we would have done anyhow. I think it's important for people to know this. Especially since there are so many tests and things out there to identify the chromosomal abnormality early. Some people use these tests for education and preparation. Some people, or most rather, use them for selection of the fittest.

What a bummer it would be if Wyatt wasn't in this world. His smile brightens many of our days and his laugh is infectious!

The truth of the matter is: Wyatt is more like other kids than he is not. And although Down syndrome has brought us [EXTRA]ordinary new friends, personal growth and experiences, life isn't all that different at the end of the day. And that is something that doesn't always enter my mind, but is a thought of great importance. 

For more on diagnostic testing for Down syndrome, please, click HERE.


Eden and I (with Great Uncle Dan to the far left) on a boat!

Aunt Kelly points out fish to Eden at the Georgia Aquarium
Wyatt is super excited watching the fish at the Georgia Aquarium
Great Aunt Carol with Eden and Wyatt
Josh and Wyatt ready to go!
Josh and the kids at our Waterfall hike
"Hey baby, what's up?" Wyatt is stylin' for our dinner out the last night of vacation!