Monday, March 30, 2015

No Christmas Card Miracle This Year

Growing up, we always had a rule at our house that you had to finish what you started.

So, if you signed up for tumbling or band, you had to stick with it, at least until the end of the season.  Then terms could be renegotiated.  

And it was a really good life lesson for me in keeping up with things. That is until this past Christmas season.  I regret to say that I will be unable to finish my Christmas card project from 2014.

That's a really hard thing for me to give up.  I have sent Christmas cards every single year for about as long as I can remember.  Even while I was away at college, I always had a list to cards to send, and loved going to the mailbox each day to check and see if I had gotten any in return.

As I got older, my Christmas cards grew to include a holiday letter and even photos.  And I always took time to write an individual note in each card.  That's something that was very important to me.

Well, as Grace's first Christmas came around, I found myself just about out of time in every corner.  So, with a  little encouragement from Kyle, I decided to work on them in the month of January.  It's always a little bit of a slower time at the paper, and I vowed to work on a few each evening until I got them all done, usually around 120 or so.  

And for the past few years, that plan has worked out just great!  Not only is it less stressful for me in the holiday season, but it also gives me the chance to include holiday thank you notes in many of the cards.  

So, instead of planning to work on them in December, I usually find a really cute photo of the three of us from Christmas and turn it into a card.  I also got away from a holiday letter.  The year before, we had gotten some unsettling results from Grace's MRI, and I couldn't bring myself to write a happy, cheerful letter.  Instead, I included a sheet with 12 photos, one from each month of the year, and called it "The Twelve Months of Herschelmans."  It was really fun to see how much Grace had changed from January to December.

Well, this Christmas came and went, and I got started about making my cards just after the first of the year.  I have a beautiful picture of the three of us all dressed up in front of the hospital's giant Christmas tree.  I also got my photo letter done, and got both things printed out and ready to go along with a list of Christmas thank you notes to write.

This year's unsent Christmas cards and letters . . .
I brought them home from work, set them on the table in our living room where I would see them all the time, an inspiration to finish them. Then, January came and went, and I decided to make it my goal to get them done by Valentine's Day. It came and went too, and I decided to try to do them in the month of March.

Well, now it's almost Easter, and I think I have to throw in the towel.  Not that I haven't had good intentions, but at the rate I'm going, it just might be next Christmas before I get them all done.

That being said, I don't like to waste anything, so I will be holding onto this year's cards and letters, since they're already printed, and including them in next year's Christmas card. 

Yes, I said next year.  Because I'm really hoping to get back in the habit.  It's one of my favorite things to do.  Sometimes it's the only correspondence I have with a friend all year long, but it gives me a chance to tell them I was thinking of them. 

I already have a few ideas to expedite my usual process, including some mailing labels and a new address list.  And Kyle has offered to help me too, because he knows how important it is to me.  I still probably won't get them done in December, but I'm hopeful to have them done in the first part of next year.  Who knows? Maybe I will even start some this summer.  

But there's still a chance I won't get them done this year or the next year. And that's hard for me. It's a project that I love, and I like to finish things I start.  But times change, and some things inevitably fall to the bottom of the list.  Even if I don't get them done, I know my friends and family will understand, and I'm confident they know I think of them whether or not I actually get my cards sent. 

Christmas will come and go each year whether or not I send out my cards, but it will still always be one of my favorite projects.


Sunday, March 29, 2015

Feet of Grace

The kindness and generosity of our community and surrounding communities never ceases to amaze me.

Several weeks ago, I got an e-mail at work from Heather Edwards, owner of Fusion Dance Center in Greenville. She also owns the studio in Hillsboro.  The e-mail said that each year, her dancers put on a benefit recital called "Feet of Grace" as a way to give back to their community.  And this year, they had selected Grace as the honoree.

These are the beautiful dancers who performed in today's "Feet of Grace" benefit recital.
Heather told me that many of the young dancers at the Hillsboro studio, taught by Shanna Conner, had been following our story and were very touched by Grace's journey.  And we are honored they asked us.

The studio in Hillsboro, which started at the Moose, opened around the same time Grace was born.  I can remember thinking how much fun it would be to sign her up for dance classes when she was big enough.  I did a little bit of tap dancing and tumbling when I was little, and couldn't wait for Grace to try on a tutu.

Some of the dancers from Hillsboro perform in the opening number.
Even though Grace may never have a chance to be a student at Fusion Dance Center, they honored her at today's recital.  And we were thrilled.

They have done this benefit recital for four years, and it's always been called "Feet of Grace," which is neat.  In addition to the awesome recital, they also took up a love offering for us to put toward the research study.

Another dance routine from the recital.
Today, March 29, was the big day.  Although Grace wouldn't be dancing, I still wanted her to look cute for the show.  And she always does!

After lunch, Kyle, Grace and I, along with Grandma Susie, rode over to the First Christian Church in Greenville, who generously donated the use of their gym for the recital.  

The gym was full of parents, grandparents and friends all eagerly waiting to see their favorite dancers perform. And the program included nearly 30 dance selections from dancers of all ages. Dancers from the Fusion Dance Center in Hillsboro and Greenville were joined by the Vandalia Performing Arts Center and Gracefully Yours Dance Academy in Collinsville.

Before the end, we had a chance to thank everyone for their kindness and generosity.
And we loved the whole show!  Grace especially liked the music, and she sort of moved to the music while sitting on her daddy's lap.  It was such a wonderful afternoon.

After the dances were finished, Heather asked us to come to the front and explained about this year's benefit.  And she thanked us for being there.  We wouldn't have missed it for the world, and we were so honored that they asked us.  The program said this was a chance for the dancers to give back to their community without expecting anything in return. Each and every young dancer today had a smile on his or her face as they performed some of their favorite numbers. They definitely touched our hearts today dancing for our Grace.  It was truly a "Feet of Grace."

These are the owners of the three dance studios who participated today.

Saturday, March 28, 2015

Happy Birthday, Aunt Emily!

Happy Birthday, Aunt Emily!  She's officially 29, and for the very first time!  And we're so glad we got to help her celebrate this weekend.

Johnny and Emily were back in Illinois this weekend to celebrate Emily's birthday with her family in Lombard.  The Voss family is always so gracious to invite us up to come and see Johnny and Emily.  It's still a four-hour drive, but it's much closer than Washington, D.C.

Grace is all smiles hanging out with Aunt Emily and Uncle John.
Over the past ten years or so, we've made the trip to Lombard more times than I can count for weddings, showers, parties and just visits.  I've even been up to be the guest speaker at Emily's sister Malory's high school journalism class once.  

And in all those visits, Emily's family has become part of ours too.  I know they're technically my brother's in-laws, but I think we've sort of adopted them - or maybe they adopted us.

It's hard to tell who is happier in this photo . . . 
Grace has been on several trips to Lombard too.  Emily's brother has a son, just a month or so younger than Grace, so it's always been fun to see the kids together.  This trip, Emily's mom and dad had a pink princess bear made for Grace at Build-a-Bear, and Lyncoln even helped her open it up.  It was so sweet.

And the Vosses have also become part of our "Grace Filled Journey." They've been a big financial support to the INAD research study, and it was so much fun to see them wearing purple "Gracelets" this weekend.  We continue to be humbled by the love and support so many have shown to us on this journey, and we are forever grateful to each and every one of you who lift us up in prayer.

Grace and her new pink princess bear.  She just loved it.
We spent a long time in the car this weekend for just a few short hours to visit with our family, but it was worth every single minute.

Friday, March 20, 2015

The Final Curtain

Happy or sad, it seems that endings always make me cry.  Tonight was no exception, as we shared some family togetherness time watching the series finale of Glee.

There's just something about the end of a show that gets to me. I also enjoyed the series finale of Parenthood earlier this year, and shed my share of tears there too.

I'll admit that I've not always been a Gleek.  I was a bit late to the party, but I'm glad that it's a show I tuned in for.

One day when Grace was taking a nap, I was looking for something to watch and found Glee on our instant Netflix list.  Kyle thought I might like it, but I was skeptical about watching a show about geeky high school kids.  I felt like I lived enough of that in my own high school experience.

But that particular day I couldn't find anything else on TV and thought I would give it a shot.  As luck would have it, Grace took a short nap that day, and I only managed to see about half an episode.  It wasn't the characters or even the storylines that captivated me.  It was the music.  And I've been a Gleek ever since.

Since I didn't get to watch the entire episode, Kyle decided he would watch it with me, and we've seen nearly every episode together and many of them with Grace.  One of my favorite videos we've taken is of Grace standing up next to the ottoman and dancing to the music.  It was so sweet.

Over the years, the cast sang many of my favorite Broadway songs and I even learned to love a few new songs.  But I also grew to enjoy the characters and the storylines too.  I found myself reliving some of my high school awkwardness as I watched and shared in their struggles.

Always the one to root for happy endings, I was very sad when Cory Monteith died midway through the series.  I somehow knew that Finn and Rachel would end up together, found myself hoping for that happy ending.

But in life, endings aren't always happy.  It doesn't mean the journey can't be great, but tonight, in the end, Finn and Rachel didn't end up together, because he wasn't there. And that made me sad.

Life is so hard sometimes.  I think that's been the hardest part about Grace's diagnosis, knowing that she might not get that happy ending, that we might not get a happy ending.  And that's unbelievably hard to fathom.

But then midway through tonight's two-hour finale, they played a segment from the very first season. It reminded me that endings aren't always happy, but there's always hope.

The clip showed the original cast members, including Monteith, singing the Journey hit "Don't Stop Believin.'"  The tears just rolled down my cheeks as I looked at Grace, who was smiling back up at me, and reminded me that I will never stop believing in her, no matter what.

Glee has been something I have really enjoyed watching together with my family, and although I'm sad to see the final curtain call, I know we can rewatch old episodes on Netflix and enjoy the music too.  Thanks to the cast and crew for sharing their talents with us these past few years, and reminding us why we should never stop believing.

Saturday, March 14, 2015

If You Can Dodge A Wrench

They say "if you can dodge a wrench, then you can dodge a ball."

Well, I'm pretty sure I can't dodge a wrench, and after watching today's dodgeball tournament at Hillsboro High School, I'm pretty sure I can't dodge a ball either.

This morning, the Hillsboro High School Interact Club and National Honor Society hosted a dodgeball tournament as a fundraiser for the INAD research study, and Grace was the special guest of honor.

Grace and the grand champion dodgeball team.
Shortly after the first of the year, the National Honor Society sponsor Kristy Andrews called me at work with the idea for the fundraiser.  At the time, Kyle and I had several requests to do fundraisers for Grace and our family, and we had been telling everyone no.  But since we had just started our crowdrise page to raise funds for the INAD research study, I told Kristy we would talk about it.

Kyle and I were hesitant to do any fundraisers for Grace because for the most part, our insurance covered everything we needed for her care.  However, the more we looked into the research study at Washington University, the more excited we got about it, and figured the fundraising would be one way that we could help.

Grace got a new snuggly teddy bear and flowers as the guest of honor.
So, I called Kristy back to tell her that we were honored they wanted to do this for our family.  Really, Kristy has sort of been like family for a long time, since she worked at the paper and was friends with my brother, Johnny, in high school.  In addition, the president of the National Honor Society this year, also works for the newspaper and helps babysit Grace some of the time.

After some correspondence back and forth, Kristy told me they were planning the tournament on Saturday, March 14, and I offered to write up a news item for the paper.  With everything set in place, we were really excited for the big day.

Some action from the tournament.
We didn't make it for the start of the tournament, but arrived in time for the last few games.  There were about ten teams, including one faculty team, signed up to participate.  When we got there, Kristy gave Grace a vase of flowers and a super soft teddy bear, since she was the guest of honor.  She was excited to snuggle with her new bear.

More tournament action.
As we stood on the sidelines and watched the tourney, one student came over and ask if she could take our photo.  She said she had been telling all her friends on Google+ about the tournament, and they thought it was really neat.  Another team asked if they could get their photo taken with Grace too.  It's hard to believe sometimes that she's a little local celebrity.  She could sign autographs if I could convince her that crayons were fun.   It was also really neat to see many of the high school kids sporting "Gracelets" in her honor.

Grace and I watching the tournament with Grandma and Grandpa Galer.
We sat and watched several of the games, and it was neat to see all the kids having such a good time. I also decided that I'm probably way too old to play dodgeball, since I haven't even looked at one since I was in high school (which contrary to what Kyle says was NOT in the Stone Age).

Kristy sent me a message after the tourney to say they raised around $700 for the INAD study, which is just incredible. We feel so honored and humbled to be adopted by this community, which six months ago didn't even know that INAD existed.  Now, they are with us every step of the way, helping us find an end to this disease one dodgeball at a time.

All the kids who played in the dodgeball tournament today were winners in our book!

Friday, March 13, 2015

In The Big Inning

With spring training officially underway, this family is definitely ready for baseball season!

Grace and I got our first taste of baseball this year at a special musical, In The Big Inning, at Zion Lutheran School in Litchfield on Tuesday night.  The musical was put on by the third and fourth grade Hosanna Choir, including Kyle's cousin, Katelyn, and we were thrilled to get to see her on stage.  We would have brought Kyle with us too, but he was sick this week.

We were also honored to be special guests at that evening's show.  During the day, Kyle's aunt, Angie, took "Gracelets" to students and staff in all grades, as they have been prayer warriors for Grace since day one.  They also voted to donate their fourth quarter chapel offerings to the INAD study at Washington University.

Principal Wes Jones introduced Grace and I at the musical.
Prior to the start of the show, the school's principal, Wes Jones, introduced himself to us, and showed me that he was proudly wearing his purple "Gracelet."  He told me a very touching story too.  Mr. Jones said the last time that he wore a bracelet like this was for a friend who was battling lymphoma, which is a form of cancer. His friend is still teaching, and just this year marked five years being cancer free.  I got goosebumps just thinking about the amazing ways that God works.

When they got ready to start the show, Mr. Jones shared our story with the audience, and asked Grace and I to stand up and wave to everyone, all the people that are keeping us in their prayers.  We feel so blessed to have so many prayer warriors.

Katelyn and her friends in the Zion Lutheran School musical.
The play begins with 20 or 25 third and fourth graders getting ready for the big baseball game against a hard team.  They feel like they need a "Hall of Famer" to help them win.  Along the way, the kids learn that God uses ordinary people to do extraordinary things if they have faith.  The kids called them "Hall of Faithers."  

I really enjoyed watching Grace during the play.  Part of the time she was trying to wave at the kids and she loved all the cute songs in the musical.  And the story behind the musical really got me thinking.  So many times I feel like God should have chosen someone more special to be Grace's mom.  I'm just an ordinary, small-town mom, not equipped to meet some of the demands required of me.  But I have faith that God can use me in some extraordinary ways. It will be tough each and every day, but God expects us to do our best. He doesn't expect us to be perfect, just to give Him everything we have. And I do my best each and every day to be the best mom to Gracie that I can be.  

And I have faith that God is going to use Grace in some extraordinary ways too.  He does each and every day in showing me the importance of determination, patience and courage.  She's the bravest little girl I've ever met.

Lots of smiles when you have this many grandmas loving on you.
Thanks to the generosity of this community and beyond, she may even make a difference in the world of INAD.  From donations, we mailed an $8,000 check to Washington University this week to start the research study, and I got an e-mail today saying we were the first official donors to the study.  We will continue raising funds for the study until the day they find a treatment for these very special kids.  

And we couldn't do it without each and every one of you who have helped us along the way.  You see, God is using each of you in an extraordinary way too.  So, take courage and wisdom, and God will make us all "Hall of Faithers," simply by believing. 

Grace always has a good time hanging out with her cousins.
Thanks to the staff and students at Zion Lutheran School this week for inviting us, inspiring us, loving us and most of all, for praying for us. It means the world to us.


Thursday, March 12, 2015

Freezin' For A Reason

There is a saying that “Life’s not measured in the breaths you take, but by the moments that take your breath away.”

On Saturday, I was able to take part in one of these moments, both literally and figuratively. That was the day that I decided that running into Lake Springfield, a balmy 34 degree Lake Springfield at that, would be a good idea.

Grace hangs out with her dad before this year's Polar Plunge.
That’s not exactly true. I had actually decided to take part in the 2015 Polar Plunge to benefit the Special Olympics almost a year before, after talking to Jen and Adrian Baker at the Litchfield Chamber of Commerce banquet.

Jen, Adrian and their 10-year-old son Gavin have been taking the plunge for the last half dozen years in honor of their daughter Ainsley, who has Down Syndrome and is the namesake of the Bakers’ team for the plunge, “Ainsley’s Army.”

Team Ainsley's Army (Jen Baker, Gavin Baker, Kyle and Stephanie Schofield)
 My beautiful wife Mary has done several news items about Jen and Adrian’s voyages into the chilly waters of Lake Springfield and I’m always up for new challenges, so I quickly said that I’d take the plunge in 2015, despite Adrian telling me they cut out more than a foot of ice from the lake for the 2014 edition.

I hadn’t really forgotten about my promise, but it wasn’t at the forefront of my mind when Jen brought it up to Mary earlier this year. We’ve had a lot going on lately and have asked a lot of the community in regard to fundraising, but still, I felt the pull to keep my promise and take the plunge.
Oddly enough, the older I get, the fewer hesitations I have to step outside my comfort zone and try things that could be epic, whether in regard to failure or success. Want to go to Colorado to see a concert? Sure. Want to do the Big Dawg Dare 5K obstacle run? Why not? Want to go traipsing into the cold and murky waters of Lake Springfield? Sign me up.

Heading into the chilly water!
So with a donation from our family and a spectacular sense of under-preparation, Mary, our daughter Grace and I set off for Litchfield, where we were meeting the Bakers. This year it would be just Jen and Gavin, after a back injury kept Adrian on the bench, so to speak. From the moment we pulled in the Bakers’ driveway, I realized just how unprepared I was.

“Did you bring shorts to plunge in?” Jen asked. Of course not. I had asked zero questions going in, so I had no idea what attire would be sensible, except that wetsuits were not allowed (probably a good thing because I imagine I would look like a stranded sea lion in a wet suit).
I also realized that I didn’t bring a towel, which one would think would be pretty high on the priority list. Fortunately, Jen brought extra and I didn’t have to air dry after the plunge.

Freezin' for a reason!
 We got to the KC Hall by the lake where registration was going on a little after 11 a.m. and were greeted by an assortment of Ninja Turtles, neon-haired women holding toilet plungers and other plungers who opted to go the costumed route. There were also a handful of people who were wearing decidedly fewer clothes than the workout pants and Ainsley’s Army pink cammo shirt I was sporting. They looked really cold, even before the plunge.

After getting registered and hanging around for a while, our group, including Jen’s friend Stephanie Schofield, made its way down to the water’s edge. It was a little interesting trying to get Grace down in her stroller, but Mary is pretty much Wonder Woman and managed to get a good spot along the fence where she could both hold Grace and take photos. I’m not sure I could have done one of those things successfully, let alone all three, but that’s why she’s Wonder Woman and I’m not.
With the time of reckoning upon us, I turned to Gavin and asked if this was a bad idea.

Okay, maybe not as bad as I thought.
 Gavin’s a pro at this. If he thinks this is a bad idea, what chance do I have? None. But then you remember two things, 1) You’re already in line to plunge and just minutes away from doing so; and 2) There is a reason for this.

Sure it’s fun to watch people in funny costumes run screaming into the frozen Central Illinois waters, but each and every one of those people, all 253 of them, made some kind of donation that will help the Special Olympics. They are making a difference in the lives of some very special children who have overcome a lot bigger obstacles in their lives than a little cold water.

Going under water!
 So in I went. In all honesty, it wasn’t as bad as I thought it would be. I made it out to the end of the plunge zone to give the Springfield EMT a high five, kind of a badge of honor for the plungers, and even went completely under water on the way back, on purpose. I figured at 6’3”, I wasn’t getting the full effect.

That resulted in one of the two times that the plunge actually hurt as for some reason it felt like my eyebrow had frozen to my skull. Mary has a nice picture of me trying to bring the little fella back to life.

The other time was in the changing tent, where the floor was half ice and half mud. Pretty sure one of my toes fell off, but I’ll just look for it next year.

That’s right, next year. Like the Big Dawg Dare and some of the other stunts I’ve done, this won’t be the last time I do the Polar Plunge.

This is the ice they cut out of the lake before this year's Plunge.
 Whenever I originally said I’d do it, I had two reasons – I wanted to help the Bakers, who are amazing advocates for their daughter, and at the time I thought there was a chance Grace could participate in the Special Olympics some day.

Kyle is all smiles after taking the Plunge!
While that may not be the case after we received Grace’s INAD diagnosis, I’m still happy that I could help such a good cause. And take this as a warning, my goal for next year is to convince at least one more person to do the Polar Plunge with me. You have 12 months to think about it. Don’t forget to bring a towel.


Friday, March 6, 2015

Snow Much Fun

Although I can remember countless hours of playing in the snow as a child, as an adult, I'm not really much for the cold. I don't mind the snow, so long as I can stay inside and watch it with a nice mug of hot chocolate.

Our favorite snow angel!
That being said, we also want Grace to have as many life experiences as possible, and building a snowman and sledding are just things that all kids should have a chance to do. It's hard sometimes, because Grace can't beg and beg to play in the snow, so I have to talk myself into suiting up to go outside in the cold.

It might be the fact that it takes almost as long to put on Grace's snow pants, her coat, mittens, hat and boots, as we spend in the snow.  But I have to say for the couple of days we played outside this week, it was worth it.

Grace and her daddy building their snowmen.
On Sunday, we opted for building a snowman.  Church was cancelled because of the weather, so we bundled up and headed out after finishing our lunch.

We set Grace in the 12-inches of snow in our front yard, and kind of packed it up around her so she wouldn't fall over.  We piled up some snow in front of her and let her play with it, while we worked on a snowman.  It wasn't the fanciest snowman in the neighborhood, but we were pretty proud of our efforts.

Our snowman!
So, after we warmed up, we headed back outside again on Friday afternoon.  Grace didn't have physical therapy in Springfield, so we enjoyed a rare day at home together.  

Daddy takes a turn pulling Grace in her sled.
Today, we decided we would try sledding.  The one problem was that we don't actually own a sled.  And let's just say it's hard to find one in stores in March!  So, I was wandering around Dollar General, trying to figure out something that would work, and thought about using a laundry basket with some rope to pull it.  I bought the rope, but we settled on a laundry basket at home.  It actually worked out much better because we discovered Grace would have had trouble staying on a regular sled, but was safe and sound in the basket.

Mommy liked pulling Grace too.
It took a few adjustments before we figured out how to pull her in it without tipping over, but once we did, we had a lot of fun pulling her around our yard.  There weren't any giggles of joy or squeals of laughter, but she did have lots of smiles as we pulled her through the snow.  And it was definitely a good workout for us!  Grace have decided not to take a nap today, but I sure could have used one!

It might not be the most conventional sled, but it worked!
Our last winter experience was actually one we did with her during her first snow, making a snow angel.  I think it was one of her favorite parts because she giggled as I moved her legs to make the bottom and her arms for the wings.

Making a beautiful snow angel.
I have to admit that I'm really glad that spring is just around the corner.  I much prefer taking Grace on walks and pushing her in the swing, but every once in awhile, winter proves it can be "snow much fun."

Snow much fun!

Thursday, March 5, 2015

A Lesson in Life

It's been more than ten years since I sat in the lecture hall of a college campus, but that's exactly where Kyle and I found ourselves today. Only this time, we weren't simply observers.

Shortly after Grace was diagnosed with INAD, I was corresponding with her geneticist at Children's Hospital, and she asked if we would be interested in talking to some of her genetics students at Washington University this spring.  Although she told us we could answer, "not now" or "no, never," but we didn't even hesitate for the chance to share our story.

Dr. Beth Kozel said she was teaching medical students about the importance of using exome sequencing in clinic, which is the genetics test Grace had done last summer. Since the test is relatively new, said she thought it would be good for students to hear about the impact of this technology from a parent perspective as well.

We said yes from the get go, but this was the part of her e-mail that really touched me, "To become good doctors, students need to learn how to approach conversations like this, and having insight from a family like yours would be wonderful."

So, today was the day.  Dr. Kozel started the lecture at 8:30 a.m. and asked us to be at the lecture hall by 9:15 for our portion.  She even provided someone to meet us by the parking garage and lead us to the hall, which was very helpful, and we enjoyed all the inside walkways.  And many would be surprised to learn we were even early!

Kyle and I got to sit in on the last part of her lecture, and it made us wish we had been able to stay for the entire part to learn more about the exome sequencing and the medical ethics behind some of the testing and results.

She had asked earlier this week if we were planning to bring Grace with us, and we really hadn't planned to. We thought it would be nice if she could keep her regular schedule and go to school, so we stuck with that.  Instead, we sent lots of pictures, which were put into a collage on the wall behind us.

Then it was our turn to talk.  There were between 40 and 50 medical students in attendance, but we weren't really that nervous.  We were just honored to share our story, including how we ended up in genetics and what the process and results meant to us and our future.  It also gave us a chance to talk about the research study, also happening at Washington University.

We even had a chance to field a few questions from the audience.  One student asked if we were planning to tell Grace she had this genetic condition, which is not really something we had ever thought of. Since Grace has very few words, chances are she won't understand. But we felt like we would talk to her about it, even if she did understand.

Another student asked us if we would do the clinical trials if they ever became available, and we would have to talk about that possibility in the future, but we were certainly excited about the prospect.

One of the best questions came from a student who asked us to tell the students as fellow doctors how to share information like that with families, and we encouraged kindness and compassion.  Aside from all the medical jargon and test results, what I remember from our visit when we learned about Grace's diagnosis, was the compassion Dr. Kozel showed us when she told us to never give up hope.  We told the students to remember that these children may just be a chart or a file number to doctors, but to parents, it's their whole world, and to remember to always show kindness.

After we finished our 30-minute presentation, we were touched that several students came over to thank us for coming to class and sharing our story.  One even stopped us in the hall to ask a few more questions.  It turns out, he had just met Dr. Kotzbauer (who is conducting the research study) not long ago to learn more about his research.  When he learned how rare INAD was, he said he was surprised to meet us after having just talked with Dr. Kotzbauer about his research.

As we walked back to the car, we talked about this amazing opportunity we had. Though we would have spoken for free, the university offered us an honorarium for our time.  We talked about it, and agreed to take it, with the sole purpose of returning it to the university for the INAD study.

This was the second class we have spoken to about INAD and our journey with Grace, the first being Janet Walch's class in Morrisonville. We hope that it's not our last opportunity to share our story.

Maybe someday, they will ask us to come back and talk to medical students about what it was like to be part of the fundraising efforts and research study when they find a viable treatment for the INAD kids. 


Monday, March 2, 2015

Disney Day Out

One of the reasons that we started this blog was to share some of the fun experiences we do with Grace.  Our trip to see Frozen on Ice this past weekend was just such an experience.

Last fall, one of our friends called to ask if I would be interested in a mommy and daughter date trip to see the hit show.  And I didn't even hesitate to say yes. All together, there were three mommies and three little princesses at the show.

Although I have been talking about it ever since we bought the tickets, I'm pretty sure Grace didn't understand what we were going to do. But I didn't let that wane my excitement.  I even asked mom and dad to get her an Elsa costume from the Disney Store for Christmas.  And I'm pretty sure I was WAY more excited about it when she opened it on Christmas Day.

Princess Grace in her new Queen Elsa costume and her new star wand.
It's not that I even like Frozen that much. I was just super excited to share such a neat experience with my little princess.

We tried the dress on one other time for a princess day fundraiser in Litchfield, and I must say Grace just looked darling.

So, needless to say, I was ready for the day to finally arrive. We got up early (which has always been a big feat for me), and I couldn't wait to get Grace dressed.  I even worried about what I would wear, not having any Frozen gear myself.  I settled on just a regular old boring shirt.

The dress wasn't exactly made for car seat riding, but we managed to get her in there nonetheless and met our friends in Litchfield.  Everyone was very excited to get there.

These little princesses are ready to see Frozen on Ice!
And even though not one of us was directionally savvy, we still managed to find our way to the Scottrade Center, and even found a place to park.  It was fun to walk the few blocks to the stadium and see all the little girls dressed in their favorite Frozen outfits.  

It was wall to wall people once we got in the doors, and plenty of souvenir and snack stands selling anything you could possibly imagine from Frozen.  All three girls settled on lighted star wands, and it was the best $32 I have spent all year. Some moms would probably envy the fact that Grace just can't ask for something at every souvenir stand.  I don't ever hear, "Mom, I want that" or "Mom, can we get that?" But just because she doesn't ask, doesn't mean I can't indulge her every now and then.  I picked the star wand because I knew she could wrap her hand around the wand part, and it wasn't too heavy.  She liked it during the show, but she has enjoyed playing with it even more at home.

Princesses cheesing at intermission, along with Bruce.
After we stopped by the snack stand, we made our way to our seats for the show.  It was a lot of fun with good skaters too.  It was a little long for Grace, and I'm not sure exactly how much she got out of it.  But I know she loved the music, because she was rocking in her seat.  I also know she just loved being there with me and our friends.

All of our favorite Frozen characters were there!
Sometimes, it's a big effort for me to go and do things like that, especially without Kyle to help.  I took a stroller to walk with Grace, but I still had to carry her some, and our friends were only too glad to help when we needed it, for which I will be forever grateful.

Although I don't know if Grace will ever remember anything about our special day, I know that it's a memory I will always treasure.

Sharing a special day with my favorite Frozen princess.