Monday, September 14, 2015

Fight the Fight

So what do you do when your child is diagnosed with an incurable, untreatable genetic disease that could take her life before her tenth birthday. You fight the fight. That's what you do.

We have been SO blessed by the outpouring of love and support since Grace was diagnosed with INAD last November.  As soon as Kyle's column ran in the paper, people immediately started asking what they could do to help. And our standard answer was that we were fine (well, as fine as you could be).

These are the new Fight the Fight shirts.
But then we heard about this research study at Washington University from one of the moms in our support group, and she wondered if we would help raise $150,000 to help fund it for two years.  I was hesitant at first, but I said yes, because that was one thing I could do to help Grace.  So many times I feel helpless in her quest, but that was something I could do.

Although, it turns out I didn't have to do much.  You, our awesome community, have pulled together and done it for us.  There isn't a single week that goes by that I don't get a phone call or hear about another fundraiser for the INAD study. Last week's Volley for Grace fundraiser was no exception.

Pete presented us with a check for $1,000 from Fight the Fight.
It actually started in February, when we brought Grace to meet science students at Morrisonville High School.  Their athletic director Megan Hanlon asked if we had ever heard of Fight the Fight, a not-for-profit company based in Gillespie that raises funds for families in medical crisis situations.  We had heard a little about it, but not much.  Basically, Fight the Fight sells specialty clothing and donates the proceeds to area families, and each recipient has a certain time period to benefit.

Megan told us she had contacted founder Pete Visintin about the possibility of adding Grace to their list of recipients.  She had hoped they could do some personalized shirts when Morrisonville hosted Lincolnwood in baseball later that spring.  However, Fight the Fight is growing in popularity, and the soonest Grace could get on the list was this fall. 

Eighth graders at Morrisonville won the penny wars competition, which raised $500!
So, she decided they would switch to volleyball between the two teams, which we thought was a great fit because two of Kyle's cousins would be freshmen on the Lincolnwood team this fall.

Kyle corresponded some with Pete about sharing our story on their website, and toward the end of the summer, he sent us the shirt designs. The front said "Volley for Grace" with a volleyball and her initials on the front. And the back said "You're Our Amazing Grace."  The shirts came in both red and orange, so we figured we would order one of each color and support both teams who support us so very much.

Grace's biggest fans, Kayley and Kensey.
The Volley for Grace event was held on Thursday, Sept. 10 at Morrisonville High School.  We arrived in time for the junior varsity game so we could see Kayley and Kensey play too.  As usual, Grace had quite a cheering section, including Kyle's parents, sister Mikaela and nephew Quincy, cousin Dana, and much of Kayley and Kensey's family. 

After the junior varsity game was over, they invited us down to the floor and we had a chance to meet Pete Visintin in person.  He talked a little bit about his inspiration to start Fight the Fight, which came when his dad was battling brain cancer. Then, he presented us with a $1,000 check for the INAD study, and said he would have a little more as the shirts could be ordered through that weekend. 

Grace's cheering section included her cousin, Quincy, Aunt Mikaela and cousin Dana.
Then, Kyle and I had a chance to talk.  We hadn't exactly worked out who would talk, but neither one of us are especially shy when it comes to telling our story.  I was sort of inspired by what Pete said, and so, I did most of the talking, just sharing how thanks to a very generous community, we were able to keep fighting the fight each and every day. 

You know, we have bad days sometimes, because the bottom line is that this disease sucks, and takes so much away from our beautiful daughter, our Amazing Grace. I would give anything in the world to hear her say, "I love you, mommy." Absolutely anything.

Just the girls hanging out at the game.
But somehow I always go back to a quote that Mikaela shared with me after Grace was diagnosed. "When life gives you 100 reasons to cry, show it you have 1,000 reasons to smile." Yes, there are times this wretched disease makes me cry, but there are a million more times that Grace makes me smile.  And I will always Fight the Fight for her.

After the check presentation, Morrisonville had another check presentation for us, raising $500 in a penny wars won by the eighth grade class. They also hosted a volleyball serving fundraiser that night and a 50/50 drawing, which brought in over $200. Add to that a donation from the teachers for a jeans day, and we came home with almost $2,000 for the INAD study.  Washington University KNOWS that Montgomery County cares about Grace and about INAD.

After Grace had a chance to meet some of the students and players, Megan gave her a gift, including her favorite candy, M&Ms, and her very own Washington University T-shirt.  We can't wait for her to wear it the next time we see Dr. Kotzbauer. 

We settled in to watch the varsity game, and Grace got some special snuggles with Aunt Mikaela while Kyle took photos of the game.  After the game, we posed for a few photos and chatted with people in the stands and coaches from both teams before heading for home after an awesome night.

And remember, always Fight the Fight!


Thursday, September 10, 2015

Back To School

After a summer full of fundraisers, trips, swimming and lots of fun, it was time for Grace to go back to school this week for her second year of preschool.

Gracie Lou on her first day of preschool!
Last year, Grace attended the Hillsboro United Methodist Church Preschool at our church, where both Johnny and I attended when we were her age.  One of Kyle's favorite parts when we take Grace to school is looking at all the old photos of students who have gone there before.

Although I had always figured Grace would go to the preschool at our church, the spring before her third birthday, we met with the school district's pre-K program, since Grace qualified for their special education serves as well.  It was a really tough decision for us because we felt like Grace would be well taken care of at either school.

First day of school family selfie!
In the end, it was a discussion with the teacher at our church, Mrs. Brown, that pushed us over the top.  I know Grace would have excelled in either program, but she had a really great experience at the church last year with Mrs. Brown, Mrs. Reynolds and her aide, Carla.

As the school year came to an end, we decided we would do one more year of preschool at the church and then a year of pre-K at the school district before kindergarten since Grace has a late birthday.

Hanging with mommy on the first day of school.
Orientation was on Tuesday night, where Grace got to hang out with her new aide, Alex, and meet the new friends in her class.  Most of her friends from last year transitioned to the afternoon class for kindergarten readiness, but the teachers felt like the morning class would move at a slower pace and be a better fit for Grace.  We will certainly miss seeing the families everyday, but we know it's a chance to share our story and our Grace with new friends and family, who have already seemed to embrace her.

After we got done with the parent part at orientation, we returned to the classroom where Alex was reading books to Grace in a brand new book nook in the playroom. Grace was having a tea party with another student as well, and I wasn't sure she was going to come home with us she was having such a good time.

Now and then: first day of school this year and last year.
Wednesday morning, she woke up at 6 a.m., maybe just excited for her first day of school.  She and her dad shared oatmeal cake for breakfast, and we dressed her in a new birthday Minnie Mouse outfit and pink tennis shoes, completing her outfit with two gracelets that Kamryn Kiper made for her.

We gathered up her backpack and stopped by her favorite pink chair for a first day of school photo.  That's where we took her picture last year, and I couldn't believe how much she had grown in just that year.  She couldn't quite sit up as well this year, but she still has that same beautiful smile.

Mrs. Brown helps Grace with her name apple the first day of school.
Then it was time to go to school. The teachers did a great job of providing a space to take those special first day of school photos, and Kyle helped Grace answer her question for the morning.  She was all smiles when she waved us out the door.

We picked her up to find out that she had colored her own picture of the first day of school, ate some teddy grahams and enjoyed making new friends.  One little boy, Hudson, made sure to come and tell her goodbye before he left that morning.  And he was the first one to welcome her to the classroom on Thursday.

Hanging out with Miss Alex at school.
Grace has taken some extra-long naps this week since she's tired from having so much fun at school.  But we are so grateful for a place that embraces our Grace and makes the most of each and every opportunity with her.  We are looking forward to a trip to Broom's Orchard next month and the St. Louis Zoo in the spring, and some of the cutest kids' programs throughout the year.

It's hard for me sometimes because Grace can't participate in school the way that her friends can. But I'm so proud of her that she does participate in every way that she can, and I'm grateful for teachers and reach out to her and meet her where she is.  

This is the picture Grace colored on the first day of school.
Back to school, and it's gonna be a great year!


Tuesday, September 8, 2015

The Birthday Princess

Happy birthday to the most beautiful princess in the world!

Princess Grace celebrating her birthday at church.
Though it's hard to believe, our Grace Louise turned four on September 7, and just as Grace would want, we celebrated in a big way!\

Some of the volunteers who helped with the church party.
I guess you could say the celebration actually started at A Grace Filled 5K on Saturday.  Thanks to lots of volunteers, we had enough birthday cupcakes for everyone who was part of the race.  And Grace had the chance to share her birthday with others who were celebrating that day too.

Just some of the refreshments from the church party.
The festivities continued on Sunday, the day before her actual birthday.  Although Kyle and I couldn't actually go to church, his sister, Mikaela and her husband, Scott, took Grace in our stead. During the service, those with birthdays get to put their birthday offering in a little brown church, and Uncle Ralph picked out four special pennies for Grace, and his granddaughter, Izzy, helped Grace put them in the church.

Some of the decorations at church.
Then, the celebration continued after church. On the first Sunday of every quarter, the OWN committee hosts refreshments after church to celebrate all those birthdays in that quarter. And they had a special surprise for Grace.

Grace celebrating with family at church.
Church members had decorated the entire fellowship hall in pink and purple with balloons, tiaras, princess cupcakes and even a two-tier princess cake.  Many even wore their favorite Grace shirt to celebrate.  They brought cards, and Grace's preschool teacher, Mrs. Brown, even painted her a special "Grace" painting for her bedroom.  We weren't there, but I heard Grace smiled the whole time they were there.

Grace's family birthday party.
Then, came Grace's birthday party. Thanks to the help of our wonderful mothers and families, the church's fellowship hall was turned into a Hawaiian paradise.  Kyle and Grace had bought party decorations on Friday, and they did an awesome job picking things out for the party.  And our families did a fantastic job of making sure it looked great too.

Daddy helped Grace blow out her candles.
Grace loved sharing cake and ice cream with her dad, and had smiles for everyone who was there to celebrate.  Then she and her daddy opened all her presents, and she just loved watching him while he read all the cards out loud.  Grace got some darling new school clothes, a new book, nail polish, a few new stuffed toys, and of course, her favorite candy, M&Ms.

Hanging out with cousin Quincy. They both matched in their Hawaiian wardrobe!
Then we posed for a few photos.  By now everyone on both sides of our family is used to my obsessive need for photos. Whether they like it or not, they seem to tolerate me.  And we visited with everyone before saying our goodbyes.

Grace liked watching her daddy open up her birthday presents.
But the celebration didn't end there! Monday was Grace's actual birthday.  Since it was Labor Day, it also meant the Hutson family reunion for my mom's side of the family.  However, it had been a really busy weekend, and as much as we hated it, we decided it might be better to stay home this year.

Daddy the princess?
So, we slept in and made Grace birthday cinnamon rolls for breakfast. Then we just played and played with her all morning.  We blew bubbles, built block towers, played ball and even had a tea party.  Somehow, I even think Grace knew it was her special day, because she was so smiley and happy all day long.

PaPa John playing the inflatable ukelele.
Grace's birthday has always been a bit bittersweet for me, as she shared the day with my Grandpa Phil. They only got to share one birthday together, as he passed away before she turned two, but I know he watches out for her, and was so pleased they shared the same birthday.

Hanging with the Galer family.
It was also Grace's first birthday since she was diagnosed with INAD, and I wasn't sure how I felt about that.  It seems hard to celebrate another year of life, when you look back at how far Grace has regressed in her skills over the past year. It's hard knowing what's down the road ahead of us, and wondering just how many birthdays we will have to celebrate with Grace.

Some beautiful Armour girls aunt Aunt Mikaela!
And that makes me kind of sad. But the truth is that none of us know how many birthdays we will have to celebrate with our families. Not a single one of us is promised a tomorrow. The lesson here is to live each day to its very fullest and celebrate each birthday with as much excitement and happiness as you can. Because that's exactly how Grace would want it.

This is how we celebrated Grace on her actual birthday, just the way she would have wanted it.


Saturday, September 5, 2015

A Grace Filled Journey 5K

Wow! Just wow!  There are no words to describe how honored and humbled we were by the turnout at today's A Grace Filled 5K, but I will do my best to share our thanks in this blog.

It's hard to believe that the big day was finally here.  We got up early (okay, early for us) so we could be on the course around 8 a.m.  All three of us had our purple "A Grace Filled Journey 5K" shirts on, and we were ready to roll.  

Today's Grace-Filled 5K was just simply amazing.
Although the race didn't start until 9, there was already a large crowd at the high school when we got there, and everyone wanted to say hi to Grace.  It was awesome.  She definitely enjoyed all the attention.

And I loved visiting with all the people, who came from all over to join us today.  I told Kyle yesterday, I was going to have to look at it like it was our wedding weekend, where I wouldn't have a chance to talk to everyone, though I would have loved to.  But we are SO grateful for everyone who joined us today.

The princess definitely enjoyed all the attention today.
As the race time drew near, the runners lined up first, followed by the walkers.  Johnny and Emily made a few announcements and thank you, and said there were officially more than 750 signed up to participate all over the world.  We ended up with participants in more than 22 states, the District of Columbia and five countries outside the United States.  How awesome is that!

And before we knew it, the runners took off, started off by Ronald McDonald. Kyle had decided to man a booth selling car decals and raffle tickets, and Grace and I really intended to walk the one-mile course together.  However, we just got to visiting with people, and decided to stay on the sidelines.  It actually worked out better, so we could cheer for all the finishers and keep visiting with those who came to celebrate with us.

Grace took a few moments to pose with the race directors!
It didn't take long before some of the one-mile participants began arriving at the finish line, where Ronald McDonald was there to give high-fives.  And we cheered as people (there were LOTS of them there today) continued to finish both courses. Some ran with their strollers, and others ran with their favorite pooches, but everyone had a really great time.  Since we didn't walk the course, Grace and I parked near the finish line, and she loved waving to the runners as they went by.

Race day selfie with all the runners in the background!
One of the neatest parts of the race was when Dalton Tefteller crossed the line in his chair from Ainsley's Angels of America and pushed by his friend, Mitchell Beck. Ainsley's Angels of America provides the chance for those who aren't able to roll in running events all over the country, in honor of Ainsley Rossiter, who also battles INAD.  I'm not sure there was a dry eye in the place when Mitchell pushed Dalton right over that finish line.  It was amazing.

Dalton and Mitchell posed with Grace after they finished the race.
There was so much going on that day besides the race too. Our friends at WSMI did a live broadcast of their Sports Saturday show from our event, and there were fun things for kids to do too, like pose for photos with Ronald McDonald, balloon animals with Professor Longhair, a bounce house, face painting and kids games. There was also lunch provided by two local service organizations. 

We also had a couple of special presentations in addition to the grand total. The local Prairieland Leathernecks Marine Corps organization donated $100, and one of their leaders, Rick Robbins, ran the course before the race even opened today.  Then, Beckemeyer fifth grader Kamryn Kiper set up her table with woven rubber band bracelets, and she raised over $400 just today, and nearly depleted her bracelet supply. She's one of those most thoughtful people you will ever meet.

Members of the Lincolnwood soccer team who participated in the race today.
Earlier in the week, the Lincolnwood High School soccer coach texted Kyle to tell him he was bringing the entire team to the race, and they all wore their team shirts. We also had several families sign up to participate together, and I absolutely loved watching all the kids running to the finish line. In a way, it was bittersweet, knowing that Grace may never have a chance to run, but she certainly enjoyed every minute of today.

And we did too.  Kyle and I have lived in Montgomery County nearly our entire lives, and have know first hand the generosity of this community. I have seen it time and time again.  But until Grace was diagnosed with INAD, I had never seen it first hand. I continue to be blown away by the love and support we are shown each and every single day, especially today. It's a day that we won't soon forget.  And special thanks to our friend, photographer James Ryan, for taking all the pictures today.  It's hard for me not to be the one behind the camera, but I knew we were in good hands with James.

Both of Grace's new cousins came for the race!
It meant so much to me when people would stop us to ask if they could get their picture taken with Grace. She looked awfully cute in her purple shirt, number 1 race bib and a purple crown headband.

About an hour and a half after the race began, Johnny and Emily were there to announce a preliminary grand total, and we were so honored to have Dr. Paul Kotzbauer and four members of his lab there to participate in the race and accept the check. They have been working very hard to find a treatment for INAD, and it really means a lot they came to show their support today and meet some of those who are working very hard to raise money for the study.  

The initial goal was to raise $10,000 at the race, and Johnny got a little teary when he presented a big check to Dr. Kotzbauer for $23,500.  I have to admit, I got a little teary eyed too.  Thanks to this amazing and generous community, our family has been able to raise more than $50,000 for this study, and I'm so excited to say that the fundraisers continue, even after the race.

Big check presentation photo!
As we joined Kyle's family for lunch, I pulled up Facebook on my phone for the very first time since the race started. I began to scroll through the posts, and every single one of them was from the race. People used #beatINAD and #gracefilled5K to share their photos from Hillsboro and around the world.  It was awesome to see people joining together to #beatINAD.

There just aren't enough words to express our gratitude for today. Seeing a sea of purple shirts take off down Fairground Ave., I felt a few tears well up in my eyes and I stepped to the side to give Kyle a hug.  Our little Grace is most definitely changing the world. It's not exactly in the way I imagined it would be, but her laugh and her smile have captured the hearts of everyone who knows her. 

And together, we will all #beatINAD.


Thursday, September 3, 2015

Three And A Half Minutes Of Fame

We finally got our three and a half minutes of fame this week!

This is a screen grab from our television debut this week!
Being in print journalism, it feels kind of funny to be excited about being on television, but we were truly thrilled for the chance to share our story with even more people.

When we first got Grace's diagnosis, we weren't entirely sure we wanted to share our story, even in The Journal-News.  It's just a hard thing to talk about, and we weren't sure how many people we wanted to know. But, eventually, it got harder and harder to tell people on an individual basis, so Kyle wrote a column to share our news with the entire community.  And the outpouring of love and support hasn't stopped since.

Although Kyle and I had written about Grace in our columns since before she was born, she had not really been in the newspaper much outside of that.  It's sort of unwritten rule in the newspaper business not to use your own children in candid photos and things like that.  And we sort of intended to keep it that way.

However, she slowly started to creep into news items here and there for various fundraisers and events being held in her honor. We were asked the other day  how many events have been hosted for Grace, and we couldn't answer!  We guessed around 30 or so, feeling very blessed.

I would guess that Grace's picture has been in the paper around 100 times since she was diagnosed with INAD.  And she was even mentioned in one of Dave Kane's sports notes in the State Journal Register one Monday.

But until recently, we hadn't really done much outside publicity in The Journal-News, since Kyle and I happen to have lots of access there.  He did some publicity on WSMI Radio for the Grace Cup soccer game, and we were interviewed again by WSMI just last week.

As the race day got closer, I started talking with a friend and fellow J-School alum from Mizzou.  She works with public relations at the St. Louis University School of Medicine and she helped me get in contact with some of the St. Louis media.  We reached out to St. Louis, since that's where the study is being done.

After e-mailing several news outlets, I got a response from three, and we ended up being offered a spot on the Fox2News morning show this Wednesday.  We were SO excited to have the chance to share our story with thousands of viewers at once.

The producer sent me all the information, and we had to be at the studio in St. Louis at 8:15 a.m. for a live 8:40 a.m. spot.   It meant getting up WAY earlier than we are used to at our house, but it was worth it.

We arrived at the studio, and they set us up with microphones, and interviewed us right there in the lobby.  I was really nervous, especially since it was a live segment, but everything went really well.  We had a chance to talk about our Make-A-Wish trip to Hawaii, Grace's diagnosis and the research study as well as the Grace-Filled 5K this weekend.  Grace even seemed to enjoy her time there too.

For us, it was a chance to tell lots of people about INAD and how they can get involved and help.  We are so blessed to have raised so much money for the research study and hope to continue to do so.

Anyone that missed the segment, can check it out here, just so you don't miss our three and a half minutes of fame.