Saturday, January 31, 2015

An Honorary Lady Hiltopper

Kerriann Cooper, Jaicie Halleman and Kelsey Traylor.

For these three Hillsboro High School seniors, tonight's basketball game was one they had worked very hard for the past four years. It was THEIR last home game, THEIR senior night.

But as the Lady Hiltoppers prepared to take the court for warm-ups, it turns out it was someone else's night to shine.

Before coming out onto the court, the announcer said that tonight, the Lady Hiltoppers were wearing purple "A Grace Filled Journey" bracelets and were making our sweet little, Grace, an honorary Lady Hiltopper for the game. Wearing purple bracelets was a pretty big deal too, since they were playing a very tough county rival in the Litchfield Purple Panthers (whose school colors are purple and white).

Grace and I sat in the players' chairs as the girls ran out and the crowd cheered.  Each of the girls came over to say hi to Grace before starting warm-ups, and presented her with her very own Hillsboro Toppers shirt.

I couldn't stop smiling from ear to ear, so proud of this little girl for her courage and strength, and most of all her beautiful smile.  

Mommy and Grace, an honorary Lady Hiltopper tonight!
We headed up to the top of the bleachers (because there was such a huge crowd for the game tonight), and cheered for the Lady Toppers. It was an awesome game, very close the whole time.  And Grace loved every minute.  In fact, one time, I got out a princess book for her to look at, and she kept looking over the top of it to watch all the action.

Although nothing is impossible, it's not very probable that Grace will ever have her name announced and run out to the court for the Lady Hiltoppers.  But, we will always be grateful for this year's team, coaches and parents for making Grace an honorary Lady Topper tonight.  We couldn't be more proud of our favorite Topper.

Tuesday, January 27, 2015

Family Time!

Family has always been important to me and Kyle.  It's probably because we both come from fairly large extended families with lots of time to play with our cousins when we were growing up.

I definitely have more cousins on my mom's side of the family, as she has seven brothers and sisters. However, I have such fond memories of spending time with both sides of the family growing up, and I know that Kyle does too.

We have both been really excited for Grace to share some of those same experiences with our cousin's children.  And Grace will actually get her own cousin in June as Kyle's sister, Mikaela, is expecting.

Sometimes, it's hard for me at family functions to see all the little kids running around and playing with each other.  That's exactly how I remember family reunions and get togethers.  And for Grace, well, it's just not that way.

It makes me sad sometimes, but then I just stop and remember how lucky I am to have Grace in my life.

This past weekend, my cousin, Todd, brought his family down from Naperville, and we all got together for dinner at my aunt and uncle's house.  We don't get to see each other nearly often enough, so it was fun to catch up with he and his wife, Tanya, and their kids, Peter, Matthew and Abby.  I loved hearing the kids talk about what they were learning in school and what kinds of things they like to do.

They know that Grace likes books very much, and were so sweet to bring her a brand new Elephant and Piggie book.  She has one from Kyle's Aunt Karen that we love, so it was fun to get a new one.

Grace's cousins, Peter and Abby, read a new book to her!
My favorite part of the whole evening was when Peter (who is in second grade), sat right next to Grace on the couch and read her the new book.  He did an awesome job, and she just loved being a part of it.  He also let her play with his St. Louis Cardinals hat, and helped his sister, Abby, take a turn reading to Grace.  Then they all settled in to watch some Disney Junior shows together.  And it just made my heart smile.

I just love this girl and her sweet smile!
No, watching Grace with her cousins is not exactly how I envisioned it would be.  But in true Grace fashion, she found her own way to get to know them better.  And I wouldn't trade that for anything.


Thursday, January 22, 2015

Stamp Out Cancer

Wow! We feel so blessed to live in such an awesome community and grateful for all the love and support everyone has shown us. So, we decided it was time to give a little something back to our community!

This weekend, Montgomery County will be home to a HUGE fundraiser for the Montgomery County Cancer Association. For those that don't know about the MCCA, it is an all-volunteer run organization that provides financial assistance to local residents undergoing treatment for cancer, grants for cancer research and scholarship funding.  It's an amazing organization that has helped so many people in this year.

Well, this weekend is Stamp Out Cancer, which last year raised $70,000 for the MCCA in just one night!!  The event includes a "Dancing with the Stars" theme with five celebrity dancing couples, a live band and a silent auction.

After very little discussion (we were both kind of excited about it), Kyle and I decided to make "A Grace Filled Journey" basket in honor of Grace.  It's packed to the brim with so many of her favorite things, including a "Bruce" puppy, donated by her speech therapist, Dana Holshouser.  

These are the items inside Grace's Stamp Out Cancer basket.
In addition to Bruce, it has a stuffed Minnie Mouse, two bows, a pink soccer ball, Rapunzel wand, bubbles, two books, a Frozen DVD (the NEW sing-a-long edition), Princess Sofia stickers and of course, M&Ms.  We even found a Minnie Mouse trash can to pack it in.  And the lucky winner will also get TWO purple "A Grace Filled Journey" bracelets tucked just inside.

All packaged up and ready for bids!
Kyle, Grace and I had so much fun shopping for things she liked to create the basket, and we hope if you are going to Stamp Out Cancer that you will big bid to help out an awesome organization.

And together, we can make a BIG difference!


Wednesday, January 21, 2015

Prayer Bracelets

We have been so incredibly humbled by the love and support these past few weeks of our family, friends and our community.  It touches my heart to know that so many people have lifted our sweet little Grace up in your prayers and continue to do so.  

As we continue on our journey, we know that we will need each and every one of you to keep praying for us and encouraging us to find joy and happiness in each and every moment.

My parents, John and Susie Galer, along with some help from my brother, Johnny, and his wife, Emily, bought some bracelets to wear that say "A Grace Filled Journey." Mom wanted them to be either pink or purple for Grace, but since pink is so universally known for breast cancer awareness, we decided on purple.

New prayer bracelets in honor of Grace.
Kyle and I, along with both sets of our parents, are already wearing or bracelets each and every day.  Tomorrow, I will be taking some to the kids in Grace's class because they love on her all the time, making her time at preschool so much brighter.

Many of you have asked how YOU can buy a bracelet.  Well, they're not for sale. But you're more than welcome to have one.  The idea behind it is that when you wear it, you will say a prayer for Grace each time you see it. 

Starting on Thursday, the bracelets will be available at The Journal-News office, located at 431 South Main Street in Hillsboro.  If you would like to have one, stop in and ask for one, and there is no charge. For those that feel so inclined, you may make a donation, which will be given to "iCan for iNAD," a fundraiser to support a researcher studying this disorder at Washington University.

For those that live outside this area, feel free to contact me, and we will make arrangements to get one to you.

Right now, there is a limited supply of the bracelets, but we will be able to order more if we need to.

We hope you will wear your bracelets proudly, remembering that each and every day is always "a Grace filled journey." And we thank you ALL so much for your love, support and most of all your prayers.


Tuesday, January 20, 2015

Daddy Daughter Night

So yesterday I got to see Grace all of 30 minutes, maybe. Fortunately I got the chance to make up for it tonight as Grace and I hung out while Mary and Lindsay Wagahoff hit the Fox for Cinderella (the Broadway show, not the mid-80s hair band). It was an awesome night. Here's a few pics.

Chilling out after the Happy Feet class at Fusion.
A little candle light dinner with the Princess.
Bath time.
Post-bath, pre-bed drum solo.
Future drummer for the US Soccer American Outlaws Fan Section.
A little catch before bed.
Fading fast.
A little light reading before lights out.
The Pete the Cat book has a fitting end...
"The moral of Pete's story is: No matter what you step in,
keep walking along and singing your song...
... Because it's all good."

Monday, January 19, 2015

Princess Grace

Our Princess Grace.

I think we have called her the princess since long before she was ever born.  The night I was induced with her, the nurses kept coming in to wake me up when Grace wouldn't like the position I was laying in.  It's safe to say that she's always had a mind of her own and wanted to do things her own way.

Do you think I could wear that, Sunny?  Grace managed to find her way into Queen Sunny's arms at the Montgomery County Fair in June 2012.

It's kind of funny, but even as a newborn infant there were songs she wouldn't let you sing to her and books she wouldn't let you read to her.  If it was a song I really wanted to sing, I did it anyway, but she always let me know what she really thought.

Like I said, she's always been the princess.

Our friend Queen Summer (Miss Illinois County Fair Queen) stopped to pose with Grace at the Illinois State Fair this past August. 
Since I've always loved dresses, Grace has always had more than one or two to wear.  Her grandmas have been fond of shopping for dresses too.  Although Grace may never tell me she likes playing dress up with me, I know she likes to be all dolled up.  And she especially likes it when people tell her how pretty she is.  

When mom needed some ideas for Christmas this year, I told her I wanted Grace to have an Elsa costume (from the Disney movie Frozen) that she could wear when we go see Frozen on Ice in February.  And that was exactly one of the things Grace opened on Christmas.

Last week, we saw an ad in the paper for a "princess for a day" fundraiser for Stamp Out Cancer.  For a donation to the MCCA, little girls could have their hair done and nails painted, and even get to meet Queen Elsa.  While we knew Grace wouldn't like having her hair done, we thought it would be fun to dress her up in her Elsa costume and get her photo taken, especially since it was for such a great cause.  And Grace had big smiles for everyone there, and she loved when people stopped to tell her she was a beautiful princess.

Grace got to try out her new princess crown and her Elsa costume when she met Queen Elsa in Litchfield over the weekend.
Did I mention that Grace even has her very OWN princess crown?  A friend of mine from Indiana sent her this tiara, that she won in a pageant years ago.  She mailed it to Grace so she could have a princess crown of her own.  It's such a sweet gift, and one we will always treasure.   Our Grace sure is one lucky little princess.


Sunday, January 18, 2015

Rooting For Our Home Teams

The generosity of our community continues to amaze us as cards and letters keep coming in since we first shared our journey with Grace. The crazy thing to Mary and I is that it’s not just from the Hillsboro community or Raymond area, where I grew up, but the support comes from all over, especially Montgomery County.

Mary and I really work hard to make the newspaper something to be proud of – not just for Hillsboro, but for Montgomery County as a whole. That work has really helped us build relationships both in our hometowns and outside them, but I don’t think we realized how much people cared until the news about Grace broke.

A testament to that point came last night at the Hillsboro boys basketball game at the Litchfield Invitational Tournament. As we were sitting in the stands at Simmons Gym, Litchfield Assistant Coach and SADD sponsor Jason Cooper stopped by with something for Grace.

“We know she’s not a Panther fan, but we wanted to do something for her.”

Jason gave us a bag from the LHS SADD group, filled with Panther goodies like rally towel, a basketball and pom poms, which Grace played with the entire second half. While we really appreciated the gesture, Jason had one thing wrong. Grace is totally a Panther fan. And a Redskin fan. And a Lancer fan. And a Topper fan.

We are blessed to live in such a supportive community and we are always rooting for Montgomery County too do well.
Grace LOVED her gift from the Panthers Against Destructive Decisions group, especially the pom poms.

Thursday, January 15, 2015

More Than A Ball

Grace has always gone with me to games. I think her first one was a volleyball match between Hillsboro and Litchfield just a few weeks after her birth. I had some help on that one - my brother Shane, who watched her and batted away a loose ball that made its way up into the stands, while I was on the floor with my camera.

Regardless of the sport or the season, Grace was there. A brisk October fall football game? There. A late February postseason basketball game? There. An extra-inning college baseball game that ended around midnight? Yup, there too. That one was with Grandpa and Grandma Herschelman though. Grace was often a constant companion on trips to watch Uncle Shane play baseball for Maryville University over the last three years.

Usually she just went along for the ride, happy as can be to be with people that she loved and who loved her more than anything. Sure she would get fussy sometimes and more than once Daddy had to hope that he got a decent shot in the first few minutes because a camera in one hand and a baby in the other isn't a recipe for journalistic success, but overall she has been outstanding.

Of all the sports, I think my favorite to watch live with Grace is basketball. At home, we are much more of a soccer and baseball family in regards to our viewing habits and our play. "Ball" has always been in our vocabulary, whether we were pretending to score the game winning goal in the 2027 Women's World Cup or gunning a runner down at home plate with a pinpoint throw, but as far as in person viewing, basketball takes the cake.

I remember bits and pieces of the first high school basketball game that we took her to. She would have been about four months old and Mary and I sat with my parents and Shane on the far side of the Nokomis High School gym, watching the Redskins take on my alma mater, Lincolnwood, for the 79th time in the history of the two schools.

Admittedly, I didn't remember the score, probably because I had subconsciously blocked out the 50-point thrashing the Redskins handed out to the Lancers, one of the most lopsided losses in a rivalry that is nearly as lopsided (Nokomis holds a 64-21 advantage all-time).
What I do remember is how excited I was to share something that I love so much with my little girl. Decked out in an orange and black tutu, which works for both my alma mater and her current home district of Hillsboro, Grace looked adorable, even if she did sleep through much of the game on my mom's lap.

This was taken at Grace's very first high school basketball game when Nokomis hosted Lincolnwood in January 2012. We still have her orange fan towel.

 I remember thinking how cool it would be to have her sitting next to me five years from then, coloring away on the bleachers, or even better 15 years from then, taking stats for her daddy while he gets an action shot or two.

The choice to make the Nokomis/Lincolnwood game Grace's first wasn't by accident either. Watching the Lancers and Redskins battle things out in the Mohawk Classic championship game when I was in junior high and high school are what got me hooked on high school athletics. When it was time to introduce Mary to my parents, I chose a Nokomis/Lincolnwood game as well, saying "This is Mary. She has poor taste in men." A statement that still holds true.

And on Friday, Jan. 9, a new chapter was added to my family's story that is intertwined with that rivalry. Before the game, Lincolnwood Head Coach Matt Millburg, who was just a few years behind me in school, handed me a basketball, covered in the familiar scene of black Sharpie scribbles.
"All the guys from the alumni tournament signed it for Grace," Matt said. "We appreciate all you do."
It's a ball. But it's not. It's more. There are signatures, just names. But they aren't just names. They are way more than that too.

Grace loves her basketball signed by players in this year's Lincolnwood alumni basketball tournament.

 These are guys that I went to school with or my family went to school with or that I have covered during my time at the Journal-News. A lot of them have kids that I will cover somewhere down the line, some of them I already have covered.

I'm probably not going to get to cover Grace playing a sport. I know that anything is possible and that if anyone could prove me wrong, it's Grace, but I know the odds aren't in our favor with her recent prognosis.

But this ball may be the next best thing. She's part of a team. She's part of a family that is much bigger than just those with the last names of Herschelman or Galer or Armour or Hutson.
People from every corner of the county have sent us words of hope and support through this Grace-filled journey that we are on. And we need everyone.

Sometimes it's hard not to get down. I've had to stop writing this column three times before pushing forward. But I know, regardless what happens, I'll have that ball. And I'll know that I have an endless line of support behind me, through good times and in bad.


Friday, January 9, 2015

Doctors And Dinosaurs

While the main reason we started this blog was to share our incredible journey with Grace, we also wanted a place to share all of her experiences.  She may only be three, but we've been fortunate enough to do LOTS of cool things.

This morning, we had a very nice follow-up appointment at Shriner's Hospital in St. Louis, followed by lunch with one of my friends from my college days at Mizzou.  I haven't seen Karen since she and her husband attended our wedding six years ago, and it was so much fun to catch up.  I think she liked meeting our beautiful Grace too.

On days that we have doctor's appointments, we try to take Grace to do something fun afterwards.  It doesn't always work, but we sure do like it when it does.

Although the St. Louis Zoo is one of our favorite places, the freezing temperatures kept us indoors today.  So, we picked the St. Louis Science Center.  We'd never had the chance to take Grace, and decided it had been years since either one of us had been there.  And, as a special treat, Aunt Mikaela joined us for a really fun afternoon.

Everyone indulges my LOVE for the birthday cakes in St. Louis.

At Kyle's request, we started in the dinosaur section.  In speech therapy yesterday, Dana worked with Grace, telling her that a dinosaur says "ROAR." Grace didn't try to say it herself, but she sure smiled a lot when Dana did.  We had lots of fun practicing our roaring looking at the giant T-rex today.  

Another favorite section was learning about energy. And one of the coolest parts about the Science Center is that nearly every exhibit is hands on-fun for kids of ALL ages.  Just ask Kyle.  They had one exhibit about coal power, where "kids" could through black foam shaped like coal to see how long they could power a light.  Grace tried several times to throw the coal, and just giggled and giggled as Kyle threw them in.  Kyle also tried his hand (and well, legs) at using an exercise bike to see how much energy he could create.  We found out he saved us $.0007, and I think we'll keep our service with Ameren.

Grace just giggled and giggled when we touched the "tornado."

No trip to the Science Center would be complete without a chance to build the Arch.  Since Grace was snuggling with me, Kyle and Mikaela tried their best to build a free-standing Arch.  Unfortunately, it fell before it was completed. Fortunately, no Kyles were harmed during the falling.

The poor Arch just didn't make it.

I would say we spent about two hours exploring just a few parts of the Science Center today, and I'm truly not sure who had the most fun.  We are very lucky to live so close to St. Louis and all the things it offers.  The best part is that many of those things, like the Zoo and the Science Center are even free of charge!

Although he managed to work up a sweat, moving this tower was one of the highlights of Kyle's trip.  Grace liked it too!

But the best part of the whole experience was just enjoying some family time together, which makes every adventure truly worth it.


Thursday, January 8, 2015

iCan for INAD

As we turned the calendar over to the new year, Kyle and I began our yearly talk about New Year's resolutions. Last year, I resolved to worry about money less, a resolution which was definitely put to the test in 2014.

We started talking once again about New Year's resolutions, and it was tougher this year. I felt like making resolutions seemed sort of pointless in the face of our reality.

But then I found this challenge, and it was started by a mom in Texas, whom I am just now getting to know. Her son, Jake, is five-years-old, and shares the same diagnosis as Grace. She started a challenge called "iCan for INAD." I will share the link to the challenge as well.

Part of it is a fundraiser. This mom has partnered with a national organization, Ainsley's Angels, to raise money to fund a new treatment study with Dr. Paul Kotzbauer at Washington University in St. Louis. Currently, there are no treatment options at all for children diagnosed with INAD, and this study could be very exciting for INAD families. Kyle and I have already made a contribution to help with the funding.

And while the fundraising is a part of the challenge, the part I liked most was the challenge itself. "iCan for INAD." This year, challenge yourself to do five things you "can't" do, and turn them into "i Cans."

Sometimes I get caught up in all the things that Grace can't do. During her Thanksgiving program, I couldn't help but wish she could sing and dance with her classmates at the front of the church. But then I turned to look at Grace. She had a smile on her face the whole program, and loved being a part of it. We feel very fortunate for all the experience she CAN have at preschool and in our day-to-day lives.

So, instead of focusing on the "cant's" this year, let's challenge ourselves to things we never thought we could do in honor of Grace. Kyle and I have already made our lists, and they will appear in this blog. We encourage everyone we know to pick five things to do this year. Because we know you can! Keep in mind that it's not something you have to finish in just one month, you have the whole year.

In 2015, Kyle says he "CAN"
• Run a 10K
• Exercise three or more times a week
• Write a fictional short story
• Write at least 12 columns
• Build something

In 2015, Mary says she "CAN"
• Read five or more books for fun
• Have a guest spot on Kyle's podcast
• Eat healthier
• Do a 5K run/walk with Grace
• Help find a cure for INAD by donating

This is the link for the iCan for Grace page:

We would love for you to check it out and let us know what you "CAN" do this year.  Together, let's make 2015, a year to remember!

Tuesday, January 6, 2015

You've Got Mail

For as long as I can remember, I have ALWAYS loved to get mail.  As a young girl, I can remember nearly running to the mailbox every day to see if there was anything for me.  

I loved pen pals, and had at least two from Japan for a time, as well as others from across the United States.  If I met someone that lived far away, I would make it my mission to send them mail, and I just loved when it came back in return. I've also been somewhat of a pack rat, and could probably still find most of the letters and notes I've been sent.

While each card is special, I still have a box full of letters that I used to write back and forth to my Grandma Hutson. She only lived about 30 miles away in Vandalia, but she knew how much I loved to get mail. I also exchanged letters with my cousin Stefanie, who used to make it her mission to write hers in return on the most unusual things she could find.  I still have some letters she wrote on toilet paper.  

For a time, as I went away to college, I truly tried to keep in touch with everyone I'd ever met.  Prior to Facebook, that was quite a challenge.  My college roommate's dad used to think I single handedly kept the United States Post Office in business with my Christmas card list.

Funnily enough, one of the first questions that Kyle asked me when we started dating was how much money I spent at Hallmark every year.  I told him I had NO idea, and if I did, I probably wouldn't do it.  I just considered it a hobby.

I have to admit that marriage and children have somewhat curbed my ability to send as many notes as I used to.  I still love when I have the chance to sit down and write notes, it's just not always as often as I would like.

And while I may not send as many notes as I used to, I have been humbled these last few months by the outpouring of support for Grace.  Since Kyle's column came out, not a single day has gone by that we haven't gotten a note or a card, either at home or at the newspaper office.  It's been amazing.

Just a FEW of the kind notes and treasures we have received recently.

Some notes contain favorite scripture verses, and others contain sweet messages or letters of encouragement about our journey.  I have read and re-read them all many times, and keep them next to my bed, so that I can pick the up anytime I'm down.

I hear over and over again how hard it is to live in a small town because everyone knows everything about everyone else.  I have to admit that probably has some truth to it.  But small communities have their good side too.  The support we have received from this community and beyond has truly touched us., and we are so grateful to everyone who has sent a card or a note, left a message on Facebook or said a prayer for us.  Your kindness means more than you will ever know.

I know there's no way that I will be able to write a card or a note to each person who has sent one to me.  Just know how excited I still am every time I go to our mailbox and find that someone has shared their kindness with us.


Sunday, January 4, 2015

1000 Reasons to Smile

"When life gives you 100 reasons to cry, give it 1,000 reasons to smile."

My sister-in-law sent me this quote not long after we found out about Grace's diagnosis.  And I must admit I've done my fair share of crying lately.

I cried because my beautiful three-year-old daughter has an incurable, untreatable rare genetic disorder that affects less than 25 children in the world.  And I cried because the prognosis is that she might not live until her 10th birthday.

I also cried for all the things I won't get to do with Grace.  I won't get to take her shopping for a prom dress or a wedding dress.  I won't get to teach her how to drive, how to count or even sing the alphabet song with her.

And then I cried because it's just not fair.  I look around and see healthy children running around, making messes, singing songs, saying "I love you." And my heart just aches for what is not to be.

But then I got this quote. "When life gives you 100 reasons to cry, give it 1,000 reasons to smile."  In fact, my sister-in-law had shoe tags made for us with just that quote, an ever-present reminder that life is to be lived to its very fullest.

I may have 100 reasons to cry every morning when I get up.  But that doesn't mean I can't have a day filled with 1,000 reasons to smile.

Grace takes up more than 900 of those reasons on her own.  Despite her own set of challenges, Grace finds a way to love life, and almost always has a huge smile on her face.  She loves to play peek-a-boo with you, which is usually followed by lots of laughter.  And it's hard not to smile when Grace laughs, maybe impossible.

Grace loves preschool.  She loves watching the kids and interacting with them.  No, she can't run around in the play room or sing the songs or even open the door when it's her day to be leader.  But she brings her smile with her each and every day.  When I come to pick her up, she always has a big smile and a hug for me, and I smile as I watch the kids come to tell her bye and that they will see her the next day.

One of my very favorite things is to play with Grace.  When she was a baby, I couldn't wait for her to big enough to play Barbies or board games with me.  And sometimes I'm sad I may never have that chance.  But instead of crying, I choose to play catch with Grace.  That's her favorite.  She likes to sit in the chair and throw you the ball.  She just giggles and giggles with delight (and laughs even harder if I manage to throw the ball at her daddy instead).  

Sure, life can give you 100 reasons to cry each and every day.  But instead of letting the tears pool up in your eyes, find 1,000 reasons to smile. I bet if you start, you won't even be able to stop smiling.


The Beginning Of A Grace Filled Journey

I think the things that we remember most about our lives are the moments that change it, for better or for worse. Graduations, marriages, births, deaths. Some good, some bad, some that fall in the gray areas in between.
For me, one of those moments was on Sept. 7, 2011, the day Grace Louise Herschelman entered my beautiful wife Mary and I's life kicking and screaming. Granted, if you were being yanked out of your slumber by a pair of guys in masks wielding surgical equipment you'd probably yell too.
Almost every moment since then has been memorable in one  way or another. On the outside, Mary and I may have looked like we had this parenting thing down, although the reality of the situation was far from that. 
We relied heavily on our parents for advice, support and free babysitting, all of which they gave willingly. We relied on each other when we were at our wits end and didn't know which way was up and which way to turn. And we relied on God. Asking him if we were doing ok as parents and praying for Grace in both the present and future.
Things would get a little more complicated not long after Grace's first birthday. Our moms, independently of one another, noticed that one of Grace's eyes was wandering a bit, so we spoke to our doctor about it and got set up with an pediatric ophthalmologist.
Around that same time, we started to notice that Grace wasn't quite hitting all of her milestones, like walking, number of words spoken and some other skills that we never really thought about.
That set us off on the journey through the state's Early Intervention program, starting with occupational therapy, then adding physical, speech and developmental therapy at different times along the way.
In general it was a taxing, but positive experience and at different times Grace seemed to be making strides. During this whole time, we were still confident that our little girl would walk, talk, run, take over the world and anything else she wanted to do someday.
In addition to the therapies, we also started seeing specialists at St. Louis Children's Hospital - first in orthopedics to get Grace fitted for some braces that her PTs recommended, then in neurology and genetics to try to find out what was causing the delays.
A year ago, a little bit of the wind was taken out of our sails as an MRI showed that Grace's cerebellum was a little bit smaller than that of children her age. The neurologist told us that was what was causing the issues with balance and walking, but it was really more of a symptom than a disease.
In July of this year, we underwent something called "whole exome sequencing" which looks at all 20,000 genes, even though they only know what about 6,000 do. This test would either tell us, what was wrong and how we could fix it, what was wrong and that there was no known fix, or that they still had no idea what was wrong. And it would take almost six agonizing months to come back with the results.
We hardly waited with baited breath. I fully expected that the answer would be inconclusive and that we would still be stuck in neutral on what was causing the delays. In the meantime, Grace had aged out of Early Intervention, but still did physical therapy in Hillsboro at RehabEdge and in Springfield at Kids at Koke Mill, plus speech therapy at Hillsboro Area Hospital.
Everything had pretty much been normal, with a string of doctors appointments and therapy sessions. Grace's progression seemed to slow slightly, but we chalked that up a delay in getting her new leg braces after she outgrew the last pair.
Then on Thursday, Nov. 13, the genetic testing came back with an answer.
As Mary and I sat in the back office at work, we listened to the solemn voice of our genetic counselor tell us that they believed that they had found the problem gene.
It seems that we had each passed on a recessive mutated gene to Grace and that the gene was responsible for depositing iron on Grace's brain. She said that the genetic disorder, which is lumped in a group called INAD (infantile neuraxonal dystrophy) was responsible for such things as slowing of growth and development, slower language development and eye issues, among others. The disease is neurodegenerative and loss of muscle strength and movement continues over time.
And then the nuclear bomb.
"Most children that have this condition don't make it to their second decade."
Just like that, the world seemed to fall apart. How could this bright, smiling, happy little girl all of the sudden receive the equivalent of a death sentence before she even spent her first day in kindergarten?
We learned more about the condition the following day when we met with our genetic counselor and neurologist at Children's. I believe that doctors are taught to prepare people for the worst case scenario, and while they did that, they did a good job of treating us like human beings who just had the rug pulled out from under them in one of the worst possible ways.
The last month or so have been pretty much a blur. We've spent a lot of time with family and friends, telling a few people at a time.
We've prayed a lot as well, mostly for miracles, no matter how slim the chance. They say that having the condition is a one in a million chance, but they tell us that there are only 10 documented cases of what Grace has in the US, so it's really more like one in 30 million, give or take.
Our hesitation to tell people has been in part with our own struggles to grasp the news and in part the fact that this isn't going to be a short term thing. Pneumonia is now our worst enemy, not the disorder, which will weaken the muscles and make it harder to make sure everything goes down the right pipe.
Those that we have told have been extremely supportive. For some reason, people just gravitate to Grace. There are more people in our lives that love that little girl than I can possibly fathom. And we need every one of them. 
We are not relying on a miracle (we continue to go to therapy and work to keep Grace as strong as possible every day), but we continue to pray for one every day. But if that never comes, we plan to never take another day with Grace for granted. It's easy to tell yourself that each day could be your last, but I never actually felt the importance of every second until this news.
Whether I have eight years, eight days or eight decades left with Grace, I plan to make the most of it. Every second I spend with her is life changing. And I'll never forget that.
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