Monday, July 10, 2017

Mom Guilt

Mom guilt is a pretty rough thing.  Today I am feeling it a bit more than normal.  I'm feeling guilty because we took Noah out for his Birthday lunch at a place that is supposed to be really good about having gluten free options and are careful about cross contamination.  I listened to and trusted our server and as a result Ben ate gluten.  I should have known to double check her and when I did and realized Ben had gotten gluten, I felt so bad for not checking first.  It is not impacting him as much as it has other times, and he is  doing pretty good over all, but I can tell he is in some pain. 

After a full day we finally got home, and I got to work a while on restoring my computer ( my hard drive failed  and  I lost 20% or my data and all my programs).  The new photo software program has a face recognition feature, and I noticed a trend on the pictures of Ben.  Up until he started Kindergarten, he was chubby and bright eyed for the most part.  But then the weight loss and behaviors started to happen.  I knew at the time there was something going on with Ben, and I just could not put my finger on what it was.  In addition to  losing weight, his eyes often had those dark circles under them. The doctor called it allergies and did not think we needed to be concerned about the weight loss, but I wouldn’t let it go.  We finally got him tested for Celiac Disease and that was it.  Looking at this collage the progression of the disease is pretty easy to see.  Ben went from a happy, chubby little boy, to a sometimes happy, sometimes crabby little boy who looked sick, and is now heading back to being a chubby little boy as he has gained 10 pounds in the last 6 months. 

The photo in the center is the one that caught my eye the most and made me realize how bad he must have felt while is little body was not absorbing nutrients.  More Mom guilt.  I should have caught it earlier.  I am taking photos of him all the time.  Why wasn’t I comparing them to past photos? 

The first row of the collage above  shows him as what appears to be a healthy 3-5 year old. 

The second row shows him when the celiac started to become an issue and one photo from right after diagnosis.  6-8

The third row shows him on the road to recovery, age 8 to present, and able to gain weight and take in nutrients again.   

Thanks to the new photo software, I should be able to compare photos and plan to do so from here on out.  But there is still mom guilt……..

Monday, January 9, 2017

Finally his turn

I should have known that basketball would be in his blood.
You see he was supposed to make his entrance into the world on April 6, 2008. It was all scheduled and everything, but instead my water broke about 5 am on March 20th and the c-section needed to be moved up quickly.  Looking back now, I know why it happened. Thursday March 20th was the first day of the NCAA Basketball tournament that year, and Ben apparently did not want to miss out on any of the basketball games. He was just hours old when he got to "watch" his first game.   I do vividly remember, how great it was, when all the visitors and family left so I could  finally turn the channel to something other than basketball.

We have had a boy (or 2) playing basketball in our family for the last 9 years.  So Ben has literally grown up with it.  When he was smaller, and Randy was coaching, he would occasional y "warm up" with the team.  His favorite place was always right in the middle of things.

He has been to his fair share of games in his life.  But he has been watching and he learned quite a few things from watching players on the court.  Plus he loves to shoot.
At halftime, he shoots.
There are 4 hoops in our basement.  If he is down there, he shoots.
If he is outside, he shoots.
He loves going to his brother's games,  But if he can find a ball, he will sneak out of their games and go to the other gym, and if it is empty, he shoots. You get the picture. The boy loves basketball.

About a month ago, it was sign up time for 3rd grade boys basketball team.  I discussed it with Randy and with both of the older boys playing high school ball, we were busy enough.  While Ben shoots, dribbles, and plays defense pretty good, he does not get things like double dribbles, traveling, plays, fouls, the out of bound line or playing by the rules.  Would it be fair to the other kids to have him go out?  Would we have the strength to deal with one more practice and game schedule?  Having Ben on the team requires one of us to be involved on the team too.  We just weren't sure we were up for it.  So the deadline came and went and we let it.

I happened to be at school during the first 3rd grade practice and saw them running drills.  I had a touch of remorse.  Ben could do drills.  It would be great exercise for him.  We are always looking for ways for him to interact with his peers.  Maybe we should have signed him up?  But since the deadline had  passed, I let it go.

The next week at the high school game I ran into Coach Dan  (who is also their awesome baseball coach).  He asked if Ben would like to play on the basketball team.  I told him what Randy and I had discussed and that we just were not sure how he would do, or if we were up for it.  He said he needed a couple more guys so they would have 10 total and make it easier to scrimmage, and it would be fine if we just wanted to try it to see how Ben did.

So we went to practice.  The boys were shooting when we got there and Ben jumped right in. This might not be so bad, I thought.  But then it was time to stretch.  Ben would not participate.  He wanted to continue to shoot and play in the gym and wanted no part of the organized practice.  For the next 10 minutes he laid on the floor and cried.  I have to admit, I was actively trying to get him out to the car for that 10 minutes that seemed like an hour, and if I had been successful we would have let the door slam and would not try to go back.

Then something amazing happened.  They started to do drills.  Drills that were somewhat similar to the drills he used to do with Noah's team, Ben got up, and started to participate.  He started to do so well I went up to talk with some of the other Moms for a while.  Did he do perfect?  No.  But was it a solid start?  Yes.  He was doing something he knew.  Something he had already been doing for the last 4 years.

Each practice seemed to get a little bit better.  He seems to listen pretty good when Coach Dan and Don speak directly to him (not so much when they address the whole team). But he is learning to try new things.   I have seen him try to dribble under his leg (which is hilarious), try to dribble 2 balls to half court, and give up during a scrimmage and start doing the same warm-up stretches the high school does across the gym floor (also hilarious).   The best part of all is that he is having fun!

This weekend the Knights played their first official games.  They played one on Saturday and 3 on Sunday.  We did not think he would be able to do all 3 games on Sunday, but he did!  He played a few minutes in every game.  During the second game on Sunday, he actually got a rebound and took it all the way down the court and scored.  He was so proud and so were we.  Amazingly, I happened to be filming right then and caught it on video.  Here is his shot and a couple other clips of him in action.  It should not be hard to pick him out, but he is number 10 wearing white.

I talk inclusion all the time, but I admit, it is hard work.  Some days I am just not up to it.  But I am so thankful to people like Coach Dan who gave me the nudge I needed to make sure  Ben got to play this year.  Basketball is his favorite sport after all.  It is in his blood.

Tuesday, December 20, 2016

Happy Holidays

Our young disciple group recently got their first set of bells and this was their first performance. We were a little short on young disciples, so we had to get some help from some of the older members of the church.   Ben was so excited to play the bells with everyone else.   He did not play perfectly, but he did have a blast.   We are so blessed to be part of such a loving and accepting faith community. 

Wednesday, December 7, 2016

Love Can Build a Bridge

A few years ago, I sang this song as part of a duet at church.  For some reason the timing on the opening lyric was hard for me, so I bought the song, so I could hear how it was really supposed to go. 

Fast forward to now, and this song is still in my iTunes and is one of Ben's favorites to sing.  I love catching him singing when he does not know I am listening.  I had been trying to record  him for some time now, but when he would catch me he would usually stop singing.  This time he obviously knew I was filming him, he decided to sing along anyway.

This is actually great song for this time of year as we can all use some extra love and maybe a bridge build here or  there. 

Happy Holidays!  Enjoy!

Thursday, September 29, 2016

It's Buddy Walk Time!

It is so great to be going to a Buddy Walk again.  I didn't realize how much it meant to us to be part of an organization who supports it's nations groups in a significant way, until we had lost it.   We are walking in the Omaha Buddy Walk to show support for more than 400,000 individuals with Down syndrome in the U.S. Please join us as we celebrate Ben on this special day. The event has fun activities for the whole family. It would be great to have you with us in person, but if you can not be there, please consider getting a Ben's Brigade shirt for just $10 and wearing it on that day and often through out the month of October for National Down syndrome awareness month.   We have a limited number of shirts left and they look like this:
Contact us if you have questions or want more information or to order a shirt!
Sincerely, The Willey Family

Sunday, September 25, 2016

Rough and Ready Rodeo Challenge

This weekend Ben was able to attend the Rough and Ready Rodeo Challenge at the Aksarben Stock Show and Rodeo.  It is a fun morning for kids with special needs to spend some time at the Rodeo and even participate, with out the crowds and noise.  Each participant is matched with a volunteer who takes them around the arena and introduces them to the cowboys and animals.  They even get to pretend to be cowboys when they got to ride horses, rope and get up close to a real bull and even pet him.  Ben had a blast.  The morning was followed up by some yummy ice cream and some delicious brownies that Ben couldn't eat, but both Mom and Dad were each able to sneak one and can verify that they were delicious! Ben seems to be getting much better at understanding when we tell him that a food will make his tummy hurt.  But I was not fast enough when the cowboy handed Ben some bread to feed Midnight.  Ben did not eat any, but we had to go wash his hands since he touched gluten.  It is crazy how gluten can pop up in the most unexpected places, but we were able to deal with it.  Enjoy some photos from the day.
Bronc riding

Picking out his stick horse.

He was NOT a fan of the mustache!

Lindsey was a GREAT volunteer!

He is getting to be a pro at taking selfies!

Mom and Dad even got to be in one of the photos.

This bull was seriously BIG!

This cowboy was trying to teach Ben to rope. 

Thank you to all the sponsors who helped to make this day possible.  It is so awesome to see these kids getting a chance to experience the rodeo at their own pace.