Thursday, December 21, 2017

Looking Back On A Year Of "Firsts"

As we prepare to celebrate Charlotte's very first Christmas with our family, I've been reminiscing about this past year and many of the "firsts" we've already celebrated.

The biggest first was of course the addition of Charlotte to our family in February, and it probably means I should start thinking about her first birthday party too!

Then there was the first time Charlotte rolled over during one of Grace's physical therapy sessions, the first time she sat up by herself, her first word (dada), her first tooth and her first time crawling.
It was a big year of firsts for Grace too!  In addition to becoming a big sister, she graduated from preschool, lost her first tooth, started kindergarten and even had her first overnight stay in the hospital.

 It's been interesting to me how much changes from the first child to the second child. I think Grace has "my first" bibs celebrating every single holiday that first year, even "My First Fourth of July." I did manage to dig out a few of those bibs for Charley, but I think most of her first holidays were met with a bit less fanfare.

And while we may not have had a party for Charlotte's first summer solstice, Kyle and I have celebrated each and every milestone she's met. It was a big deal when Grace first rolled over, but with Charlotte, we watched all the little signs that pointed her in that direction.

I have been fascinated watching Charlotte learn to feed herself. From the first time I put Puffs on her tray and she managed to get them all on the floor to watching her get them stuck on her hand and try to get them in her mouth. Now, she picks them up with her finger and thumb to carefully put them in her mouth. Well, most of the time.

And I have to say that I actually cried the first time she made her way over to our bookshelf and pulled as many of the DVDs on the floor as she could, wriggling in the huge mess she made with a big grin on her  face.

I have always told people I would give anything for Grace to be able to make such a mess and get into everything. And it brought me to tears to be able to see Charlotte do that.

Some firsts this year have been bittersweet. Often, they remind me of Grace's firsts, and of skills she no longer has. Sometimes, it's things Grace has just never been able to do.

 And while I find myself incredibly excited and happy for Charlotte, I also feel a twinge of guilt in celebrating the things Grace will probably never be able to do again.

But that moment usually passes quickly as Grace offers a smile for whatever crazy thing Charlotte has gotten into, and I'm reminded that Grace will be able to teach Charlotte far more than I ever will, and will be the best big sister Charlotte could ever ask for.

Most of the time, I'm pretty sure she thinks Charlotte is pretty great too. Just don't ask her when Charlotte is using her as a springboard to get across the room.

Thanks to everyone who has shared in our journey of "firsts" this past year. The journey is hard, and the road is bumpy, but when you have the chance to embrace each and every first with happiness, turns out it really is a wonderful life.


Monday, November 27, 2017

Surviving Our First Night In The Hospital

As I tossed and turned, trying to sleep in a recliner next to Grace's hospital bed, I couldn't help but think to myself how lucky we were to have made it six years without an overnight stay in the hospital. Between the beeping of the machines, the vital checks with the nurses and a chair that was definitely not designed for sleeping, I was definitely glad our first visit only lasted one night.

The week before Thanksgiving, Grace managed to pick up the same cold the rest of us had all week. But Grace has always had the uncanny ability to just sleep when she was sick. And usually a few days of extra sleep during the day was enough to get her healthy again.

So, when Wednesday rolled around, and Grace was sound asleep at lunch, we decided to keep her home from school that afternoon. She took a four-hour nap that day. Since she only goes for a few hours in the afternoon, we also kept her home on Thursday afternoon, hoping the extra rest would help. By Thursday evening, she had a pretty good fever, but some Tylenol brought it down, and we thought she was feeling a little better.

It just so happened that on Friday, she had a routine doctor's appointment. While we were there, her fever spiked, and after blood work and x-rays, they discovered Grace had pneumonia, which happens to be very common in INAD kids, due to low muscle tone and other respiratory issues. We were quickly sent on our way to St. John's Children's Hospital in Springfield, with no real indication of how long we would be there.

There aren't many times that Grace cries anymore, so when she whined quite a bit during her blood work and x-rays, I knew she didn't feel good. My mind raced with all the possible scenarios, even wondering if we would have Grace with us through the holidays. Although pneumonia is very treatable, kids with INAD have a very hard time getting over it, and a routine doctor's visit quickly turned scary for us.

Fortunately, Grace responded to another dose of Tylenol, and by the time we got to the hospital, she even had some smiles for us. The nurses were fantastic, and after a round of antibiotics, we got settled in for the night.

Before calling it a night, I stopped by the nurse's desk for a question, quietly noticing many parents, just like us, trying to find a way to rest in the hospital room. There were patients of all ages, from babies to teenagers, and lots and lots of worried parents, hoping and praying for their little ones to feel better.

My mind wandered to those parents who have been in the hospital for days, weeks, even months with their children. The strength that must take seems almost unfathomable, though those parents I know would tell you they are just doing what needs to be done to help their child. I'm fortunate to know some pretty amazing parents, who have been strong and courageous in the face of life's hardest circumstances.

Grace had a great night, and we were discharged the very next afternoon, much to our delight. She still had to take medicine all week long, but everyone got more rest at home. And Charlotte, who spent the night with my parents, had a big, sloppy kiss for me the moment I walked in the door.
Kyle and I can't say enough good things about Grace's doctor for getting us to the hospital, and the hospital staff for taking such good care of us when we were there. 

All things considered, it was a pretty amazing stay for our first overnight hospital trip. If you've never had to try and sleep in a hospital bed next to your child overnight, count all your blessings at least twice, and remember how lucky you are to have healthy children, even if they make you want to pull your hair out sometimes.

Although we were lucky to make it six years without a hospital visit, Kyle and I know it's very likely we will be looking to have more overnight trips to the hospital in the future. There will be times that we won't be so lucky to only stay one night. But we are grateful to have each other and wonderful families to help out when we need it.

I can't say it's exactly how I wanted to spend my weekend, but it could have been much worse. We had a chance to share Grace's story with some pretty wonderful medical staff, and we know they will be there to take care of us the next time as well. After all, it's just another adventure on our Grace-Filled Journey.

Friday, November 10, 2017

Making Halloween Memories

We've officially taken down our one Halloween decoration (of course, it's a pirate sign) and thrown our pumpkins away for the season. And though we look forward to spending the upcoming holidays with family and friends, Halloween is always one of our favorites!

Grace with her classmates in their Halloween costumes.
Grace and her friends in the Halloween parade.
Grace and her friend, Talullah, the bumblebee
It's always been fun to pick out costumes for Grace.  One year, she wore a clown costume that my grandma made for me when I was little, and another year, we picked out Minnie Mouse because that was always one of Grace's favorites.

Grace and her dalmation puppies at school!
Grace agreed to get her picture taken with me, but she wouldn't smile.
With the addition of Charlotte to our family this year, we decided to coordinate costumes together, and went through a ton of ideas.  But we kept coming back to Grace as Cruella deVil and Charlotte as her little dalmatian puppy.  And with a little help from the Disney Store, we were all set.

Grace was excited to be part of the mummy game.
Grace thought her friends were funny.
Although Grace usually has physical therapy in Springfield on Friday mornings, we cancelled the Friday before Halloween so Grace could celebrate with her classmates at school.  I got to take Grace to school for the Halloween parade around the building with her class, and then enjoy the party with the other kindergarten students.  I think Grace's favorite was a mummy game where two of her friends wrapped her up in toilet paper.  I'm constantly moved by how much the kids in her class love Grace for who she is.  It's pretty special.

Kyle might have picked out a giant pumpkin to carve.
Later that afternoon, after some naps of course, we ventured uptown for the annual Halloween parade. We had to stop by our friend and photographer Ken Meade for some pictures first. But I really like the Halloween parade, even if it is a little chilly.  For us, it's something that Grace can participate in just like the other kids, which is pretty cool.  Grace and Charley won third place in the groups division, and both girls really seemed to love the attention from everyone.

Grace's friends from preschool stopped to see her at the parade.
My favorite little characters in the parade.
That weekend was our annual pumpkin carving, which is always lots of fun.  Charley was a little impatient and took a nap during part of it, but Grace always seems to enjoy being with us.  I always pick a pattern, and Kyle still hates to clean the "pumpkin yuck" out of his pumpkin.  We also watched "The Great Pumpkin Charlie Brown" which is another favorite at our house.There's always lots of laughter and fun memories.  And I can't wait for Charley to be big enough to help out.

Getting ready to carve pumpkins.
The girls loved my pumpkin!
Kyle carving his huge pumpkin.
Finished pumpkins.
Spooky jack o'lanters.
Since neither girl can eat candy, we sort of skipped trick-or-treating this year.  Instead, we spent the first trick-or-treat night greeting friends at Grandma and Grandpa Galer's house.  We also got to decorate sugar cookies with pumpkin faces. Both girls got a taste of icing, and Charley's quick fingers almost got her an M&M.  But she'll have to wait for another day.

The girls looked so cute in their Halloween outfits.
We had fun decorating cookies with Grandma Susie.
Family photo opportunity in Halloween pajamas.
Over the years we have been together, it has been fun to take memories from our childhood and recreate them together, as well as make a few new fun, family traditions.  It will be fun to see what costumes Charley picks over the years, and whether or not she wants to carve pumpkins with us.  But whatever the holidays bring, I know we will always make the best memories just being together.

Monday, November 6, 2017

Always A Tiger

This month, we had the chance to take both our girls to their first college football game at my alma mater, the University of Missouri, and it ended up being a special event for our whole family.
Kyle and I often talk of things we want to do with Grace.  I don't like to call it a bucket list, because that sounds too final for me.  We just talk about experiences we want her to have while she's with us, and we hope that's a really long time!

Meeting Mizzou Head Coach Barry Odom
Since Kyle's the sports editor at the paper, a lot of the things we like to do as a family center around sports.  We can often be found with the girls at a variety of high school events to see some of our favorite kids play.  But we also love to go and see the Cardinals play in St. Louis.  A hockey game with the Blues is also on our list.

Photo opportunity with the Tiger cheerleaders
 But it's not just Kyle that loves sports. In fact, of the two of us, I'm probably a bigger fan of college sports, especially football. And I've been known to throw my Tiger ears at the TV a time or two.
It got me thinking about what it was that first got me interested in sports.  And I remembered the first time in sixth grade when a friend invited me to a junior high basketball game.  I went out to the garage and selected a couple of my favorite coloring books and some crayons and decided I was ready to go. My mom patiently explained that it probably wasn't the best idea to take those with me. I think she worried the other kids would make fun of me. But I couldn't possibly imagine what I would do at the basketball game for the whole time we were there.

Hanging out with Mrs. Odom before the game
I would say it took maybe five minutes or less after the start of the game that I found myself cheering for the Dragons and totally involved in the game. From then on, I knew I never needed much encouragement to attend a variety of sporting events.  I didn't always know about the plays or even all of the rules, especially when I started going to high school football games, but I was always a big fan of my team.

Family photo on the field before the game

Big dreams baby girl
And that's why I wanted to take our girls to a Mizzou football game. It had probably been ten years since I saw a game at Faurot Field. Fall is one of Kyle's busiest times covering high school sports, and it just hadn't worked out. But as luck would have it, Mizzou's Homecoming weekend seemed to be a perfect fit.

Cheering is such hard work
I'd forgotten about some of the chaos of going to a big-time event, like finding parking or bag searches, but we made it. And it was definitely worth it.

Family photo at the stadium
 Prior to the game, I had contacted Mizzou's head football coach, Barry Odom, about helping us to raise awareness for INAD. His wife responded to our request, and we had a chance to meet both of them before the game. Talk about making a special experience even more magical. The Odoms were such genuine people, welcoming us onto the field before the game. And we had so much fun walking around the field, just being part of the college football experience. The cheerleaders came over to get their photo taken with Grace, and a warm rush of memories just flooded through me. From participating in Marching Mizzou for a year to taking photos of the sidelines, I will always be a Tiger. And I'm glad that I got to share a football game with my whole family.

Checking out the Mizzou Sports Arena
The weather was perfect, and we stopped by to check out this year's men's and women's basketball preview at Mizzou Arena before we headed out. It's still on my list to get Grace to see a Mizzou men's basketball game too.

As Grace's condition continues to regress, we don't know how long we will be able to take her places with us. And I didn't want to wait to see what next year brought before we tried to get to a football game. Someday, it won't matter whether or not we made it to that football game, but I'm so glad it was something that we got to do together.

All smiles from our little Tiger fan
 Although Kyle and I are probably not the most competitive or the most athletically talented people, there's definitely something about sports that brings people together. We have seen it time and time again as our high school teams rally to help us raise funding and awareness for INAD. Win or lose, we consider all of these special programs to be part of Team Grace. And that makes every single player and coach a winner in our book.


Friday, October 6, 2017

Being Part Of Team Grace

As I was scrolling through my Facebook news feed tonight, I read a post that the Litchfield High School football team raised $250 for a player on the opposing team who is currently battling cancer. I couldn't help but smile as I read through some of the comments, and discovering the money was raised in memory of one of our favorite superheroes, Faith Hartzell.

It hasn't been the best season for the Litchfield football team, as one of their best chances to win this season got away from them tonight. But, regardless of the score, their efforts off the field to help an opposing player truly make them winners in my book.

The top eight volleyball teams with Gracie Lou
It got me thinking about a lot of things. Just this past week, we attended the final check presentation volleyball game from this year's inaugural Montgomery County Invitational volleyball tournament, affectionately dubbed "A Grace-Filled Tourney." Hosted at Hillsboro and Lincolnwood high schools, all four of our county high schools raised over $7,500 for INAD research in honor of our Grace.

Grace and Charley at a Friday night game
I'm sure when each of the 16 teams signed up for the tournament, each hoped they would be the one to take home the trophy. After all, it did have a darling Princess Grace logo on it!  But at the end of the two-day tournament, only one team got to take home the trophy. And only one player on that team got to be named the most valuable player. More than 100 volleyball players competed in the tournament, but still only one gets to be "the best." 

Grace and one of her best preschool buddies, Lauren
Does that mean the other players don't get to win? I don't see it that way. When we showed up at the tournament on Friday night to see some of the county teams play, our family was particularly touched to see players from other towns wearing purple ribbons in their hair or purple socks. None of these players had ever met Grace before. But they still wanted to be part of something that was bigger than the actual game.

Grace's cheering section
Some teams knew they may not finish in the championship bracket, but fought hard to get enough wins to play at Lincolnwood on Friday in the top two brackets, because they knew Grace would be there. But only half the teams made it in the top, and some teams didn't pick up a single win all weekend. I have no doubt those girls played just as hard and with as much heart as the ones who played in the championship game.

The prayer circle before the game
It seems like we all have that inner desire to win and to be the best, and that's a great driving force for all of us to give our best at everything we do. But at the end of the day, not all of us are going to be the one that comes home with the victory, whether it's in a game or a promotion at work. But even when we don't get the win, I hope we'll always still give our best and remember there's something bigger than winning.

Kyle in the "Serving for Grace" fundraiser
Just before the start of the championship game, Grace was presented with a plaque and named an honorary member of the all-tournament team, probably the only time in her life she'll have such an honor. But it certainly warmed my heart. And before the first serve, those top eight teams made a huge circle around the gym and prayed for Grace and those researching INAD to find a cure. A few tears might have fallen down my cheeks, as I stood in awe of the entire gym full of winners, learning to be part of something much bigger than the game.

Kayley and Kensey presented Grace with her all-tournament team plaque
In the end, only one team got to take home Grace's trophy, but I can tell you that all 16 teams will always be a very special part of Team Grace for their efforts off the court. Oftentimes, some of the best stories in sports come from the athletes who learn to give of themselves win or lose. So, remember, it doesn't matter how much playing time you get or how many points you score, what you'll be remembered for is the kindness and compassion you show off the court. And you'll always be a member of Team Grace.


Thursday, September 28, 2017

Making Little Moments Wonderful

It was nearly ten years ago that Kyle and I took our first spin on the dance floor together, swaying to Eric Clapton's famous "Wonderful Tonight," at the Litchfield Sports Boosters first $10,000 dance fundraiser.
Kyle and I had only been dating a few weeks, when our friend Denise talked me into buying tickets for the dinner, which was nearly two months later.  I didn't have any idea if Kyle and I would even still be dating when the dinner rolled around, but Denise was very persuasive, and I bought the tickets anyway.  My friend, Amy, bought tickets too, so we figured if we didn't have dates, we would just go and enjoy ourselves.

But, Kyle and I were still together, and that night was such a fun one.  I got a new dress, and had my hair and make-up done. Kyle showed up at Amy's to pick the two of us up and had a rose for each of us.  Talk about brownie points!
And although neither of us is much into dancing, when the first slow song came on, I took Kyle out to the dance floor, for what has now sort of become our song.
I admit it seems a bit odd, when there are other songs that may tell our story better, like Blake Shelton's "God Gave Me You" (for the ups and downs) or Rascal Flatt's "God Bless the Broken Road." But we've sort of always stuck with "Wonderful Tonight."

I feel wonderful because I see
The love light in your eyes
And the wonder of it all
Is that you just don't realize
how much I love you

As the chorus refrain plays in my head, I stop and think about what the words mean to us. I think it's sometimes easy to be "hopelessly devoted" in the beginning of any relationship. Both partners are on their best behavior, trying to impress the other, and show how much they really do feel for each other.
But as life takes over, some of those simple gestures seem to fall by the wayside, and it's easy to take that other person for granted, just expecting they will always be there. It's easy to lose that "wonderful" sort of feeling.
One of our favorite Christmas gifts each year is a devotional book my mom gets us that we read daily together. There's one that always sticks out in my mind. Someone had gone to their pastor and said he just didn't love his spouse anymore. And the pastor said that love was not a noun, but rather an action verb, and that if he wanted to feel those loving feelings, then he needed to act lovingly to his spouse. It's kind of in line with the Kirk Cameron movie, "Fireproof."
And though that sounds simple enough, I'm here to tell you that marriage is hard, every single day. Add in the stresses of work and raising children, and it's easy to see how one can feel taken for granted.
But in our house, most nights before bed, we take a few moments to write in our "Blessings Book." Each of us has to write at least five things we were grateful for that day. Some days it's harder than others, but we can always find small things, like getting to have lunch together or take a walk as a family. It sort of helps the two of us refocus on what really matters, and finding "wonderful" moments to spend together.
Some days, it's easy to find my way into a pity party, because raising a child with a terminal illness is hard. I find myself angry that our family can't do things many consider "normal." Even just taking both girls to a ball game is a big job, especially trying to work around Grace's eating schedule. Some days, it's almost more than I can bear, wishing for things to be different.
But on those days, it's more important than ever to remember that life can be wonderful. I have to work hard at that every single day, and Kyle and I still fight more than either of us would probably care to admit. And even though life is hard, and that it's easy to take the ones you love the most for granted, really good things happen when we remember that life will always be full of "wonderful" moments. Sometimes you just have to look harder to find them and remember

Oh my darling, you were
wonderful tonight.

Team Grace

The following post was written for this year's programs for the inaugural Montgomery County Invitational, "A Grace-Filled Tourney." It featured 16 teams playing at Hillsboro High School and Lincolnwood High School over two days.  We loved every minute, and are glad to induct some new members onto Team Grace.

When my wife Mary and I were expecting our first child in 2011, I had some of the same dreams that I think most fathers do. I wondered what sport Grace would be interested in once she got older. Would it be tennis like her mom or soccer, her daddy's favorite sport, or volleyball under the tutelage of Aunt Monica, who played at Marquette University. My family is so sports-centric that the thought that she wouldn't be interested in any of the above was fleeting at best.

After Grace was born, my thoughts on my little girl's sporting future continued. Sure I'm as athletic as a water buffalo on ice skates, but Grace would be different. She was born just weeks before David Freese carried our favorite team, the St. Louis Cardinals to their 11th World Series title in improbable fashion. The doctors continued to track her growth in the 80th to 90th percentile in height, taylor made for volleyball or basketball. We watched the United States men's and women's national soccer teams and the English Premier League any chance we could and even chased each other around the ottoman in our living room with a soccer ball once she was able to walk.

The latter memory comes with a caveat, one that would become the biggest part of my life. While Grace cruised on the furniture, getting from Point A to Point B as long as she had a hand on something, she never walked on her own. That was one of the things that set us down our journey to find out why and eventually led us to the crushing news that Grace had a degenerative neurological disorder called Infantile Neuroaxonal Dystrophy, or INAD. If you've never heard of INAD, you're in good company. There are only about 50 known cases worldwide and until a few years ago, there were no studies looking for a cure. The disease is characterized by loss of muscle function and the ability to walk or talk. It also carries a pretty grim prognosis, with most children with INAD not living past the age of ten.

Since we first learned about this rare disease, we have become somewhat "experts" on INAD, genetic testing and pretty much anything else that relates to our daughters health and future. There are now multiple studies that are looking for a cure or a treatment for INAD, including one at Washington University in St. Louis, all of which are funded by the families of children with INAD. We have met with Doctor Paul Kotzbauer, who is in charge of the Washington University study, and we consider ourselves blessed to have him in our corner. We know that someday, he will play a part in curing this horrific disease.

While INAD has robbed Grace of her ability to walk, it has not robbed her of her spirit, which shines through even in the hardest times. Over the last few years, she has provided our family and our community with countless reasons to smile and to find the joy in a world that can sometimes feel like it's collapsing in on itself. In return, our community has embraced our family in a way that is awe inspiring. From bake sales to penny wars to donation raffles to T-shirts, the people of Montgomery County and the surrounding communities have raised more than $130,000 for INAD research, with most of that money going to the study at Washington University. Even beyond the fundraising efforts has been the support that our family has received. We have tried our best to give Grace as many experiences as we can while we still have her, whether that is eight minutes, eight years or eight decades. Our local teams have helped make that a reality through Volley For Grace games, first pitches, honorary medals and even a ceremonial "slam dunk" once.

All of this has helped make my dream a reality. While Grace may not be in between the pipes for the 2035 United States Women's National Team or hammering down a kill for her mommy's 2030 Mizzou Tigers, she has inspired a set of champions, who will not only carry lessons of compassion and humanity on the court, but off it as well. The student athletes that have been with us on this journey are world changers. They are helping us find an answer to INAD, to make sure that no other family has to go through what we have with this terrible disease. They are Team Grace. Now you are too.


Sunday, September 10, 2017

Grace's Sixth Birthday

Six years ago, the most beautiful blonde-haired, blue-eyed girl entered our hearts and forever changing our lives.

In a matter of moments, I went from being in labor to having an emergency c-section, to becoming a parent. Like most new parents, we felt a huge range of emotions that first day, from total and absolute love and adoration to complete fear.  We went from being able to decide for ourselves when we wanted to sleep and eat, to having someone, weighing less than ten pounds, dictate our entires lives.

Charley loved her first real food at Pappy's Smokehouse
It was a hard adjustment for me at first.  Although I always loved babysitting when I was growing up, and loved being around children in general, it was completely different having a child totally reliant on me for everything.  I was overwhelmed and just sure I was going to mess everything up.

But eventually, we found a routine that worked for us, and even though that routine was constantly changing, we seemed to find a groove as a family and enjoy being together.

Family photo at the zoo
Mommy and her girls
Birthdays have always been a fun celebration in my family, so as we neared Grace's first birthday, Kyle and I had a lot of fun planning a big Elmo-themed birthday party for our family and friends. We even had a mini party at the nursing home with my Grandpa Phil, who shared Grace's birthday. Even though they only got to celebrate that one birthday together, I know it was one of his favorites.

Shortly after Grace's first birthday is when she began to miss milestones. In the beginning, it was easy to think Grace would eventually catch up, and we just worked harder with her in therapy.  

Cheesing at the zoo
But catching up just wasn't meant to be for Grace. She continued to miss milestones and even began to lose some of the skills she had. Then, we found out Grace had INAD, and would be lucky to live long enough to celebrate her tenth birthday.

That made her sixth birthday a tough one for me. No one should have to think that their child's life is already half over when they turn six. They should be celebrating a bright future full of potential and possibilities, not worrying about increasing medical issues, and just how many birthdays they would have left to celebrate together.

Pretty great birthday present, raising $22,000 for INAD research
Those negative thoughts creep into my mind, and this year, made it hard for me to want to celebrate.  I caught myself thinking that Grace wouldn't really know whether or not we had a party. She wouldn't be able to eat the cake or open the presents, and it felt like it was just too much for me.

The birthday girl fell asleep at her party
However, with a little encouragement from Kyle, I was reminded that Grace is still here with us, and I wouldn't want to miss any of her birthday celebrations, even if she doesn't get to celebrate as many as I hope for.

New birthday outfits from PaPa Randy
The week before her birthday, Grace's physical therapist was gone on Friday, so Kyle and I decided to take the girls to the St. Louis Zoo as a family celebration for  her birthday. We had lunch at Pappy's Smokehouse first, and Charlotte got to enjoy her first real baby food, although I think she would much rather have had the ribs her daddy was eating.

Charley came to school with Grace on her birthday
Gracie loved reading books with her class
Then, we were off to the zoo.  It has always been a special place for us. We took Grace on her first trip to the zoo for my first Mother's Day. And she has always loved being outside and seeing the animals.  We aren't sure how much she is able to see anymore, but we know that she enjoy being with us.  And we made the most of the beautiful day, taking lots of photos of the girls.  Kyle and Charley loved hanging out with the penguins, and I loved seeing the flamingoes.  Both girls were sound asleep before we got to the River's Edge to see the elephants and the hippos.  All in all, it was a very relaxing, fun day to be together and celebrate Grace.

The weekend before her birthday was the Grace Race fundraiser for INAD research, so Grace had the chance to see so many wonderful people, who turned out to help us raise more than $22,000 for the study at Washington University.  Each of the kids got a birthday sucker from Grace and a chance to enjoy many of the kids activities.

The Volley for Grace night in Morrisonville was a huge success
After the race was over, we had cake and ice cream with family and friends who were already in town for the race.  Grace was sound asleep from the race, and slept almost the entire way through the festivities, but I enjoyed singing Happy Birthday to her and helping her blow out her candles.  I'm sure everyone already knows the wish we made together.  And I still hope and pray that it comes true.

Grace's actual birthday was a school day, so she had a great time celebrating with her friends. It was class picture day too, so we went to school bright and early for photos before returning later in the afternoon.  After I dropped Grace off at school, Charley and I walked back up to be part of the school festivities. For her birthday treat, I picked out orange Oreos (since that's Topper colors), and we made treat bags of Play-doh and Sixlets.  The kids loved singing Happy Birthday to Grace, and she got to sit right by the teacher when they read Junie B. Jones.  Charley and I left when the kids got ready to go out to recess.

Sharing birthday ice cream with Grandma Susie
And as if all that celebrating weren't enough, that night was a Volley for Grace fundraiser night in Morrisonville.  They raised over $200 for INAD research, and even had the entire gym sing Happy Birthday to her.  I think she definitely liked all the attention.

We ended the evening sharing some ice cream with Grandma and Grandpa Galer, who brought over some very popular birthday balloons and helped us ring in another very wonderful year.

Although I'm sure this year will present a variety of challenges related to Grace's condition, I'm excited for the new adventures they will bring as well. And I plan to cherish each of Grace's birthdays that I'm blessed to spend with her.