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!

MLH

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!

MLH

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.

MLH