Sunday, November 29, 2015

'Things' Won't Spoil Holiday Season

It's not even December 1 yet, and already I feel like I'm behind in our Christmas preparations.  I wonder when we will get our tree decorated or the outdoor lights hung.  Although I've started a little bit of Christmas shopping, that list seems to grow too, and don't even get me started on our Christmas cards.  I am just too busy and can't possibly find time to get all these things done.

Kyle and I have been talking about the word "busy" a lot lately.  It seems like you can ask anyone how they are doing, and many respond with that word or tell you that they don't have time for something. But the more we talked about it, the more we decided we would work hard to use that word less, and enjoy the time that we have, whatever it is that we are doing.

Let's face it, each and every one of us is given the same 24 hours in our seven-day week. How we choose to spend that time is up to us, and it's up to us to make the most of it.

I choose to work part-time at the paper, and though my family needs my income, it's still my choice.  For me, my job gives me a chance to have something of my own, to make a difference in my community and be part of a rich, family tradition. That doesn't mean that I always love my job. There are long meetings to cover and stressful deadlines, but it's my job, and it's my choice how I spend that time. And I am so grateful for my parents and my in-laws for pitching in with the babysitting, so I know Grace is in good hands.

Sometimes I find myself begrudging of the time it takes to take Grace to and from physical therapy appointments in Springfield or doctor's appointments in St. Louis. I feel like I could use that time in so many other ways, like cleaning the house, writing notes or just snuggling and watching a Hallmark movie. But it's my choice to take her to those visits, so I can be there to hear what they have to say. We have had several kind offers to take Grace to PT in Springfield every once in awhile to give me some time to myself. But it's my choice to go and show my support for Grace. I promised her that she and I were in this together, and she works so hard in all her sessions. I want to be there, so she knows how proud I am and how much I love her.

This year, I'm adopting that same attitude about the holiday season. Usually, I like to put the Christmas tree up in one afternoon or evening, listening to my favorite Muppets Christmas cd. Since Grace didn't' have PT this past Friday, I thought it would be the perfect day to set up the tree and do the outdoor lights. Rainy weather quickly nixed the outdoor idea, but we figured we would have plenty of time to decorate the tree.

I had to run up to the paper to get a few things done for Monday's edition, so Kyle and Grace set up our artificial tree while I was gone. Then, I figured we could get it decorated while Grace was napping. Before I dug out the decorations, I thought I would just start a load of laundry and pick up a few things around the house.  Then, I hunted up my strings of brightly colored lights and tested them to make sure they worked before carefully brightening up the tree.

After the lights were up, I went downstairs to find the tree skirt and a few other holiday decorations. Before I knew it, Grace was awake from her nap, and it was time to meet some friends for dinner. I caught myself feeling disappointed that we didn't get it done, knowing I wouldn't have another chance for a few days. But instead of dwelling on what we didn't get done, we turned the lights on the Christmas tree, and have enjoyed the view. We will get the ornaments added in the coming days, even if we don't get it all done at once.

I decided several years ago that it's much easier for me to get Christmas cards done in January after the hustle and bustle is over, so I already scratched that off my to-do list for the coming years. And Kyle and I even had a chance to get started on some of our Christmas shopping too.

As the weekend came to a close, I sighed thinking about all the "things" I had hoped to accomplish to get ready for the holidays. Then, I took a step back, and instead thought of the "things" I did. Grace and I had dinner with my parents and one of their friends on Friday night, and had so much fun catching up. On Saturday, we helped mom and her sisters get ready for the Hutson Christmas, which was followed by a special date night with Kyle.

I didn't find the time to do all the things on my to-do list, but how I chose to spend my time meant much more to me. And whether or not my "things" get done, I won't let it spoil my holiday season. Instead of being "busy," I'm going to make the choice to enjoy my family no matter what we do.

Thanksgiving Blessings

Thanksgiving. It's a day that we set aside every day to remember to be thankful and count our blessings. Oh, and a day to eat ourselves silly.

Our Thanksgiving started this year with Grace's preschool program at church on Wednesday morning. Last year's program was just darling with our adorable Grace dressed as an Indian. This year, she donned a pilgrim costume to sing some of her favorite songs with her friends.

Our cute little Pilgrim at her preschool program.
 From "Little Cabin in the Woods" to "Indian Man" and "Bear Hunt," Grace seemed to enjoy the program and listening to her friends sing their songs. It's still hard for me sometimes to watch the programs and wonder what Grace's little voice would sound like singing with the kids. But when I turn my attention to Grace, her sweet smile is enough to let me know how much she enjoys participating in the program in her own way. And I wouldn't miss that for anything.

Grace and her friends during their preschool program.
After the program was over, we shared thankful stew with preschool families. Each of the kids brought something to add to the vegetable soup, and they had the chance to help prepare it.  We enjoyed talking with Hazel and her mom, and sharing fellowship with Grace's friends.  As we got ready to leave, a couple of the kids ran over to the door for the chance to give Grace a hug before we left the church. It warms my heart to see the way the kids love Grace just the way she is.

Proud parents of the little Pilgrim!
Later that night, my mom and dad invited us over for a pre-Thanksgiving dinner at their house. Dad smoked a turkey on the grill, and mom made some of our favorite dishes.  Although we see each other at work all the time, it was nice just to relax and enjoy some time together.  Oh, and the food was great too.

Believe it or not, we actually woke up early on Thanksgiving morning. Well, some of us did.  We had to wake Grace up at 10:15 to go to Kyle's mom and dad's house. But Kyle and I got up early for a special reason. We made five pounds of mashed potatoes to donate to our community Thanksgiving meal. Our church is responsible for bringing 50 pounds to the meal, so we were glad to help out. 

Grace and Quincy visited during Thanksgiving lunch.
I was lucky that Kyle helped me peel the potatoes and it really didn't take very long. We peeled them the traditional way, even though we had seen a YouTube video on an easier way to peel them. We just weren't sure it would work. But together, in no time at all, we were all done. And they were delicious. I have to confess that Thanksgiving is the one time a year that I actually make mashed potatoes, and then we give them all away, but it's for a really great cause. Every year, we talk about making them more, but somehow we never seem to get it done.

Aren't these little turkeys cute?
Growing up, it was always my family's tradition to help at the community Thanksgiving meal, which is a place for anyone who needs a place to go who needs a meal. And although, we can't volunteer to help, it means a lot that we can still contribute.

Cousins Kayley, Kensey and Katelyn also came over to play on Thanksgiving.

After making our potatoes, I turned on another favorite tradition, the Macy's parade, while we got ready to go.  We still had to wake Grace up to put on her turkey outfit, but we managed to make it to Kyle's mom and dad's only about 15 minutes late.  We are fortunate that our families live so close to us, especially to celebrate the holidays.

We enjoyed the annual Thanksgiving walk!
Kyle's mom made lunch, which was great, and we got to hang out with his parents and siblings, and our nephew, Quincy.  It was really fun to watch Grace and Quincy interact and talk to each other. None of us knew what they were saying, but they seemed to connect to one another. And then, I got some baby snuggles, when five-month-old Quincy fell asleep in my lap.

This little turkey took a nap in my lap, and I loved the snuggles!
About mid-afternoon, we packed up our stuff to head to my aunt's house. They had eaten at 2, but we dropped in to celebrate. We got there just in time for the annual Thanksgiving walk to the cemetery, where we stopped at my grandparents' headstone to remember them. And Grace loved the wind in her face throughout the walk.

Enjoying some time with Grandma Susie.
After we returned, I got my second set of baby snuggles for the day, when Grace fell asleep in my lap. She rarely does that anymore, so it was an extra special treat.  We stayed long enough to enjoy dinner and watch some football together. Dad even had us watch a 50th anniversary concert featuring Arlo Guthrie and his favorite Thanksgiving tradition, "Alice's Restaurant."

Our biggest reason to be thankful this year. That smile just says it all.
Then it was time to head for home. Another year of celebrating family, friends and remembering all the blessings in our lives. And we wouldn't have it any other way.


Friday, November 27, 2015

Count Your Blessings

This post was written by Mary's uncle, Chuck Hutson of Vandalia, on Thanksgiving. We were both really touched by his words, and wanted to share it in our blog.  We hope each of you reading had a wonderful Thanskgiving and remembers to count each of your blessings on Thanksgiving and every day.

Thoughts on Thanksgiving.
I have long been thankful for my many blessings, and even for some things that I have felt and learned that did not seem like blessings at the time. Its easy to be thankful for our blessings once we get past the arrogance of youth when we think we know it all. When we move past the stage of "Why did you let this happen to me lord?" to the stage "Why me lord? What have i ever done to deserve even one of the pleasures I've known?" When we get past thinking that its all about us, and realize that there are others who share this life with us.

Its easy to be thankful when you take a look around and see and feel all the wonders of life. I've long believed that life is heaven enough...and hell enough...that I don't need the promise of heaven, or the threat of hell to think about how I live my life.

A little hundred year old lady named Grace passed away at my nursing home recently. Most of the 15 years she was there, I spoke with her almost daily. She was a simple woman and often pointed out a simple lesson she had learned...that there are always around us, people who are less fortunate than us. And she was thankful for her blessings. Obviously that also meant that there are always people around who are more fortunate than us as well. She never dwelt on that.

The bright morning sun was shining in on me through the window of the living room where I sat writing. I love the sunshine...but I understand the need for the rain.

To enumerate all my blessings seems such a matter of fact thing...but I feel them swirling around in my brain and my heart. The old song "Count Your Blessings" seems another good lesson...but I can't seem to count that fast, or that far, or that long...but i feel them every day.

I wear a purple rubber wrist band each day...and I touch it often during the days. Sometimes unconsciously, and other times very thoughtfully. I've never liked wearing any kind of jewelry, or even any of these kinds of bands. Always hated when I tried to wear a watch or bracelet. It always got in my way or caught on things or otherwise was an irritation. But not this purple wristband. It makes me think.

My Uncle Chuck and Aunt Jodi wearing his Gracelet in New York City.
Think of all the blessings in my all our lives...but mostly it makes me think of the little angel I wear it for...whose name also happens to be Grace. If I hadn't believed in angels before (I've pretty much always believed in them), I certainly would now. I can't believe that this little girl sent into all our lives is anything but an angel. All you need to do is see her smile to understand that. The thing I don't why? Why?

One day, much too soon, God will call our little angel home. She's not like other children you see. She has a rare terminal disease that will send her back to God before we are ready for her to go.
But Oh, the blessings she has brought us! The ability to see...that one day at a all we really have. The knowledge...that we live each day to the fullest, and that we DO need to dwell on each little smile...and cherish it...and hold on to it in our heart as closely as we can...

I think...that no one would consciously ask to have a little angel visit us for bring such joy into our lives...and then to be slowly taken away... But while we can't understand the Why of it...we truly CAN learn the lessons that this little angel has come to share with us.

I spin the purple band on my wrist. I twist it. I snap it...and I pinch it together. It has stretched and worn since I began wearing our lives and our hearts. 

Give thanks...for all your blessings...not just on Thanksgiving Day...but every day of your lives. And think especially, of this little angel...and of the other little angels our there who visit us...and the lessons they come to share with us. And if you would...say a little prayer of strength for the parents and family of this little angel who wrist band I wear.

Friday, November 20, 2015


One of my favorite childhood memories is baking with my mom.  It's always been a source of comfort to her to bake things, and I've always enjoyed the chance to help.

We got out all the ingredients to make daddy's favorite cookies!
Although Grace can't help me bake the way I helped my mom, we still give her the chance to bake with us!

This weekend is the annual bazaar and bake sale, which benefits our church, and we always sign up to bake cookies.  Last year, Grace and I baked our cookies at mom's house, and Grace was the special sprinkle helper.

Grace entertained daddy while mommy mixed the dough.
This year, daddy joined in the action, and the three of us took over the kitchen on Thursday night.  Kyle found some Christmas music on Spotify, and we set Grace up in her booster seat with a chef's hat.  Kyle wanted to make his favorite, Funfetti with icing, and I wanted to make my specialty, chocolate chip. So, we opted for both!

Helping mommy stir!
We started with Funfetti, and I got out all the ingredients and set them on Grace's tray so she could see what we needed to get going.  Since the Funfetti are a cake-mix cookie, they only required one egg and some butter.  Once we had everything gathered, it was time to start the real fun!

This one is my favorite!  She couldn't wait until we baked them!
I put all the ingredients in my awesome Kitchenaid stand mixer that we got for a wedding present.  It's still one of my favorite gifts ever!  After the dough was mixed, I put the bowl on Grace's tray and let her help me stir a little. Then she helped me flatten the cookies on the cookie sheet.  And of course, we all tried a little cookie dough!

Tasting the cookie dough is the best part!
We kept a close eye on the cookies while they baked, and then let them cool before icing them.  I added the green icing and Kyle and Grace added the sprinkles together.  She giggled as the two decorated the cookies, and Kyle helped her enjoy one of the first cookies they finished too!

Time to add sprinkles!
Daddy added his own special sprinkle. . . 
After finishing the Funfetti cookies, Kyle gave Grace a bath, and I mixed up some chocolate chip cookies.  We put Grace back in her chair for a chance to watch as we finished up.  Then after Grace went to bed, Kyle and I packaged them together for the bake sale.  We ended up with 17 bags of 1/2 dozen cookies, and we were excited to bring them to the bake sale today.  Even better, they were almost all gone by the end of the day, and I'm sure the rest will be sold at tomorrow's event.

Grace was the official cookie taste-tester!
Sometimes, it's really hard for me not to be able to pass along some of my favorite childhood memories to Grace. But I feel blessed to be able to make new memories with Grace. With that beautiful smile and giggle, I know these will be memories I will remember forever.


Thursday, November 19, 2015

Operation Christmas Child

For the past eight years, our church has participated in the Operation Christmas Child program, which is part of the Samaritan's Purse organization. The premise is that shoeboxes are packed full of items, like small toys, candy, hygiene items, stuffed animals, dolls and other things that might make a child happy for Christmas.

This is my favorite photo from when we packed shoeboxes!
And for the last three years, Gracie Lou has gotten to help pack the shoeboxes.  

The church collects items throughout the year and then selects a Sunday in November to pack the shoeboxes.  When they started, the church filled six or eight shoeboxes, and this year, they filled 150.  Once the boxes are filled, they are sent to a central location and then mailed to children in need all over the world. For some children, that small shoebox full of items may be the only gift they receive.

Grace's first shoebox!
When we arrived at the church this year, the organizers had set aside several boxes for her to fill for two to five-year-old girls.  I put her in her stroller, and she and I went through the items every time. Each box got a package of soap and a washcloth, a toothbrush and toothpaste, a handmade hat, pencils, activity book, rubber duck, doll, candy and a Beanie Baby.

Grace really liked helping to pack the handmade hats!
Last year, Grace was able to help pick some of the items. This year, she just held the box on her lap, while I packed it for her.  I wish she understood exactly how important what she was doing is for these children and their families. Grace is a sweet girl, and I know she'd have a generous heart too.  She may not understand, but I feel blessed that we can be a part of the program.

The very last box we filled was extra special.  Grace's preschool class also helped with the boxes by creating a handprint with a poem that reads "This is my hand. When you place your hand on mine, think about me. I prayed for you to receive this box. Please pray for me too."  Grace and I say a bedtime prayer together every night, and it warms my heart to know that a child somewhere around the world, may be praying for her too.  When I opened up the last box, which was not one the organizers had set aside for her, I teared up a little to find a little yellow handprint and the name, Grace.

Grace and all the kids did a great job packing shoeboxes! 
Although Grace doesn't understand much about presents or giving or helping those less fortunate, I know that she enjoys being part of it.  We are planning to pick out an angel from the Angel Tree this year too and taking Grace shopping with us. And the smile she gives us will be present enough for everyone.


Sunday, November 15, 2015

Some Hoops Dreams Come True Off The Court

Heart pounding. Unblinking eyes glued to the court that bears Lou Henson's name. Sweat pouring like rain drops.

It was pretty much everything you would expect from a small town kid making his debut in front of a couple thousand University of Illinois basketball fans.

Family selfie at Grace's first-ever college basketball game!
And I'm not for sure, but I think Dylan Miller might have been nervous too.

As soon as the University of Illinois released their schedule, I had Nov. 15 circled on my calendar. With the exception of it being on a Sunday, a busy day here at the paper, it was the perfect storm for a Hillsboro sportswriter.

Cheering for Grace's favorite North Dakota State Bison, Dylan Miller
 Just an hour away from Topper Country, Miller would be returning "home" with his new teammates from North Dakota State to take on the University of Illinois at the Prairie Capital Convention Center in Springfield, the Illini's home away from home while the State Farm Center is being redone.

The biggest name in Hillsboro High School basketball over the last three years and the first D1 men's basketball player from HHS since 1974, against the biggest college basketball program in the state made me almost have to pinch myself to make sure it was real.

Kyle had a blast shooting from courtside!
 In reality, I knew there was a chance that Dylan might not play that much, if at all, but I held out hope that he would at least see the court.

Mary and I bought tickets the day they went on sale, knowing that even if I wasn't able to procure media credentials, we wanted to take Grace to the game. Just a few short months after Grace was diagnosed with Infantile Neuroaxonal Dystrophy, the Hillsboro boys basketball team provided one of our most memorable moments as Dylan helped Grace "dunk" or as close as she will ever come to it (way closer than her daddy ever will).

Dylan talking with some teammates at the game.
 With a guarantee to get into the game already taken care of, I reached out to Wes Offerman, the media contact for the North Dakota State men's basketball team, and he was kind enough to point me in the right direction to get credentials through the University of Illinois.

In addition to my request, I also sent Wes a link to the blog Mary did about Grace's experience with Dylan. We have made it our goal to give Grace every experience possible for as long as we have her on this Earth and to spread awareness about INAD to anyone who would listen. And thankfully, Wes listened.

We enjoyed getting to meet Coach Richman too!
Saturday morning, I received an email from him asking if we could be at the game about 45 minutes early, so we could take Grace down to meet the players and coaches. This remarkable invitation is something that Mary and I may have hoped for, but never would have asked for or expected from a group of complete strangers.

As we got to the game, the nerves hit me pretty hard. The familiar orange and blue of the Illini hardwood and watching some of the best players in the country warm-up brought on a little bit of stage fright. Hence the aforementioned sweating and near cardiac arrest that occurred even before the game started.

We managed to meet up with Wes, despite some cell phone technical difficulties, and he brought us downstairs to the team's locker room.

Grace and mommy cheered from the stands.
 Coach David Richman was kind enough to take a few moments to meet Grace, Mary and I before the game. He's in his second year as the head coach of the Bison, where he has been a member of the coaching staff in some capacity since 2003, but looks like he could still play for them.

As it often does, the conversation turned quickly to kids. Coach Richman has four girls, including a pair of four-year-old twins that reminded me a lot of my own little blond haired sprite.

After the quick conversation, we made our way into the locker room, where Coach Richman introduced us and Grace went around and gave out high-fives to all of the players, with an assist from Mary.

We realized later that neither of us had bothered to take a photo of the meet and greet, but ultimately you don't always need a picture to remember something unforgettable.

The game itself was fun, with North Dakota State leading for most of the game before Illinois got hot late and ended up winning 80-74. Dylan did get to play about two minutes toward the end of the first half, to the joy of the pockets of yellow clad "Miller #42" fans throughout the arena.

Grace and I posed for a photo before the game too!
 He didn't play badly, nor did he set the world on fire, but he played and that's something that only a handful of people can say has happened to them and no one from Hillsboro in the last four decades.
The coolest part of the watching the game from the floor for me was seeing senior guard Kory Brown call Miller over after he was taken out and talk to the true freshman. I have no idea what Brown said, but you could see his leadership in that brief conversation and he quickly became my second favorite player on the NDSU roster.

The opportunity to see that conversation and to photograph a University of Illinois game from the floor are bucket list items for me normally, but they were just icing on the cake on Sunday.
The really special moment was meeting Coach Richman and the team. I know that Grace may not have gotten a lot out of it (she slept through about 75 percent of the game), but the opportunity for her to do something like that is forever etched in my memory.

Grace slept through more than half the game, but I certainly didn't mind the snuggles!
 INAD is awful. I wouldn't wish it on the child of my worst enemy. But it's through this traumatic disease that we have been able to give Grace life experiences that most kids can only dream of.
Sometimes God brings special people into our lives that help make the hard times a little easier to manage by giving us good times that are beyond measure. Thanks to Wes Offerman, Coach Richman, Dylan Miller and the entire Bison Family for being those people.


Wednesday, November 11, 2015

Hoops For Grace

We continue to be blessed (over and over again) but the generosity and the love our community has to offer. Tonight at the paper, some kind soul left an anonymous card in the front door with a dining out gift certificate, a massage gift certificate and three smooth stones with the words "Grace" "Faith" and "Expect a Miracle." We are so truly humbled by the outpouring of love from our family and the unending support of our friends.

Earlier this fall, I got a message on Facebook from Jessica Furness asking if the Hillsboro Junior High School boys and girls basketball teams could do a T-shirt fundraiser for Grace.  I agreed, and then didn't think much else about it.

Cheering for the Dragons and Hoops for Grace!
Until a few weeks ago when a photo of the new shirts popped up on my Facebook wall.  In black and green, they were really sharp, with our new favorite phrase, "Beat INAD."  I couldn't wait to get one, and I was even more excited to find out they came in the hoodie variety too!

We got our orders in and were all set to go to both a boys and a girls basketball game this week.

Check out the awesome new Grace shirts!
On Monday night, when the girls played, Aunt Mikaela brought cousin Quincy down for the game, and Grandma Kim joined us too.  We had fun in the stands (once Quincy decided it was okay for people to cheer).  I got Quincy snuggles, and Grace loved snugging with Aunt Mikaela.

Between the seventh and eighth grade games, they invited us down to the floor with the eighth grade girls team. They gave us a check for $650 from their team's challenge, and we promised to come back on Tuesday night for the boys game.

Hanging out with Quincy and Aunt Mikaela at the game!
Since Kyle had to go to a City Council meeting, Grace and I went to the game with Grandpa John, who took photos for us. It was another couple of fun games. This time, between games, the Assistant Principal gave us a check for $800 from the boys' teams, who ended up winning the fundraising challenge.

The eighth grade girls presenting their check for the fundraiser.
On Friday, the boys will be treated to a pizza and ice cream party after basketball practice for their hard work.  We were delighted they invited us as well, but we already have tickets to a soccer game in St. Louis, so we hope they will have an extra slice for us.

Assistant Principal Don VanGiesen presented us with a check from the boys teams.
And though the boys team came out on top in the challenge, the real winner is the INAD research study at Washington University.  We can't wait to take our BIG donation to the school in December.  Keep posted for an update. You won't want to miss how much you guys have raised since the beginning of the year.  We love each and every one of you, and we couldn't do it without you. #BeatINAD.


Monday, November 9, 2015

A Not-So-Spooky Holiday

Another of our favorite holidays has come and gone for the year, and this year, we celebrated Halloween in style!

Kyle and I decided several months ago that Grace would be Queen Elsa from Disney's Frozen.  She got the costume last year for Christmas from my parents to wear when we saw Frozen on Ice in February.  Halloween seemed like the perfect opportunity to get some more use from the costume.

Our Queen Elsa!
Since Grace wouldn't be able to walk for trick-or-treating, Kyle and I decided we would somehow transform her stroller into an ice castle.  We had talked about it for weeks, but didn't really get around to working on it until Halloween week rolled around.  Because that's how we roll.

With a big cardboard box, two cans of light blue spray paint and some pictures from the internet, I set about creating Grace's ice castle.  Okay, so I actually only bought one can of spray paint the first time, and had to go back and get another one.  But it worked, and with a little glitter, it really sparkled.

Hanging out with Cousin Izzy and Keith while waiting for the parade to start.
Our first Halloween outing was with Grace's preschool class. She and her classmates walked from the school to the newspaper office, up Main Street and back to school for a Halloween party. The kids even got a ton of fun treats!

Cheesing with Grandma and Grandpa Galer at the paper.
The next marked the annual Trick-or-Treat Trail with area businesses followed by the Hillsboro Rotary Club Halloween parade. For the Trick-or-Treat Trail, more than 30 businesses open their doors to trick-or-treaters and those who participate have a chance to win prizes.  We opted just to pick a few places to stop, including the newspaper office and RehabEdge, where Grace has physical therapy each week.  Mom and I also took her to get her photo taken with Ken Meade and his neat Halloween set.

She won first prize in her age group!
Then it was time for the parade.  Kids line up in different age groups, and the costumes are judged by local volunteers. We participate just for fun every year, and this year, Grace won first place in her age division.  Although I might be biased, she did look beautiful.

Kyle's "BEAT INAD" pumpkin!
We intended to do a bit of trick-or-treating in Hillsboro that night, but Grace was a bit under the weather, so we decided just to eat dinner with Grandma and Grandpa and call it a night.

Grace held the candy bucket for trick-or-treaters and Kyle showed off our pumpkins.
Grace then proceeded to sleep nearly all day on Saturday as she tried to fight off her cold. We did wake her up that evening to greet trick-or-treaters at our house and so we could carve pumpkins.  I used a stencil to create Mike Wazowski from Monsters Inc., and Kyle carved the words "BEAT INAD" out of his pumpkin. Pumpkin carving is always one of our favorite traditions, and even though we didn't get to do it until Halloween night this year, we will really enjoyed it.

Grace liked helping to pass out candy to the trick-or-treaters that came by.
The following day, we had planned to trick-or-treat with some of Kyle's family in Raymond, but Grace just wasn't feeling up to it.  So we promised to visit again sometime soon.

Halloween for the Herschelmans
Halloween ends up being a pretty busy holiday for us, but we enjoy the chance to make memories together as a family. And I think Kyle's already planning his pumpkin for next year.


Sunday, November 1, 2015

Run, Johnny, Run!

"I run today for Grace. And one day I know she'll run by my side."

It's just been just over a year since my brother sent me that text message. Last October, he ran his first marathon, the Marine Corps Marathon in Washington DC, in honor of Grace. It was part of the 1,000 miles he pledged to run for her that year.

Johnny after finishing the 26.2 mile New York City Marathon
Today, he finished his second marathon for her, this time in New York City. I'm so proud that he not only finished the 26.2 mile course in three hours and 33 seconds, but that he also helped to raise awareness for all the kids battling INAD.

Running has just never been my thing.  So, I truly admire those that run and train all the time for different events. From 5K races to 26.2 mile marathons, it takes a lot to get up off the couch and get moving.  And it's even more inspiring to see people run for Grace.

Earlier this year, when they were planning the Grace Filled 5K event, Johnny posted this quote to Facebook. "I run because I can. When I get tired, I remember those who can't run, what they'd give to have this simple gift I take for granted, and I run harder for them. I know they would do the same for me."

Johnny, and his wife Emily too, started running for Grace before we even knew INAD existed. They are a constant source of courage and inspiration to me through their efforts to raise awareness and funding for INAD.

Emily took these photos of Johnny along the course.
Their first race this year was the Cherry Blossom 10-mile in Washington DC. In celebration of Grace's favorite stuffed puppy named Bruce, they purchased a Bruce replica and have been running with him ever since.  After the 10K, they ran a 200-mile marathon relay from Gettysburg, PA to Washington DC with a 12-member team. Each friend lovingly carried Bruce along the route in honor of Grace.

And although they didn't actually run in the race, they organized the Grace Filled 5K event, which drew more than 700 runners and walkers all over the world.

They aren't the only ones to run for Grace either.  This spring, Kyle's high school friend, Kendal Elvidge and his family ran a marathon-relay in Champaign for Grace. And Kyle's Aunt Kim ran an Ironman course this summer. After the race she posted a photo of her medal and her Gracelet, and said Grace had really been an inspiration for her the entire route. In December, a group of local runners is also doing a marathon relay for St. Jude, and they chose the name "Grace-ful Runners" in honor of Grace.  That's one special little girl making a huge difference.

These photos are from the Marine Corps Marathon when Johnny went to cheer on Ainsley and her dad.
Last week, it was once again time for the Marine Corps marathon. As Johnny was running the course last year, he saw a sticker on a racing chair that caught his attention. After the race, he googled the logo, which turned out to be Ainsley's Angels of America, named in honor of Ainsley Rossiter, who like Grace, suffers from INAD. Her foundation was started to provide race chairs to give those who are unable to physically run a chance to participate in races. I got to share our story with Ainsley's mom and dad after we learned that Grace also had INAD.

Although Johnny didn't run the Marine Corps marathon this year, he did make his way to the course to cheer for some of the racers. This year, Ainsley's dad, who himself is a Marine, pushed Ainsley through the 26.2 mile course in what would be her 100th race as a captain. As they passed by where Johnny was standing, her dad came over to give Johnny a hug and gave him the bracelet off his wrist. I know it was a moment Johnny will always remember. 

Just one week later, it was time for Johnny's marathon, the 26.2 mile course through five boroughs in New York City, ending in Central Park on Nov. 1.  He texted me earlier this year and said he put his name in the lottery on a whim. His name was selected, and he joined 50,000 other runners in the streets of New York City.  Of course, Bruce came along for the ride.  Johnny carried him the entire length of the marathon.

He also had a custom made #beatINAD shirt and headband to help raise awareness for this very rare disease.  My sister-in-law sent periodic updates throughout the race on his progress, and my dad watched the route on his cell phone.  I would have loved to have been there in person, but it just didn't work out.

Grace and I made a sign to wish Johnny good luck on his race.
This is what he wrote after the race:
"A Grace-Filled Journey carried me through 5 boroughs and 26.2 miles in NYC for the #‎TSCNYCMarathon. There are too many people to thank for the coaching, motivation and inspiration, but you know who you are and your efforts helped me more than you'll ever know. The race is over, but the battle against INAD isn't. A marathon pales in comparison to the struggles Grace and a handful of other kids and their families battle every day. We must keep pushing and find a way to #‎beatINAD!"

I am so proud that our family and friends have taken up this cause in so many ways in Grace's honor. There are many times I struggle because my dreams for Grace may never come true. I listen to people talk about how their kids will be great athletes or straight-A students, and most days, I wish Grace would be able to tell me what she did in school that day. But that's my struggle, not hers. She makes her own path and changes the world in ways I could never even imagine.

Although Grace may never get to run by her Uncle Johnny's side, I know she makes a difference in so many lives each and every day. She teaches empathy, compassion, kindness and the importance of living every day to its fullest. And her beautiful smile shows that no matter what the future holds, the present is full of sunshine. And for that, I will always be grateful.