Wednesday, November 13, 2019

A Five-Year Anniversary

"It does not do to dwell on dreams and forget to live." ~ the fictional Albus Dumbledore, headmaster of Hogwarts (Harry Potter series)

Five years ago, every single dream that we had for our then three-year-old Grace were crushed. How do I remember that it was five years ago today? When I looked at TimeHop, a photo came up of a billboard for St. Francis Hospital with our family photo. We were so excited to have been asked to be part of their campaign for their maternal center, and that day was the very first day I saw that billboard from the parking lot at the Ariston.

Kyle and I picked Grace up at preschool and went to the backroom at the newspaper office where we returned a call to a geneticist at St. Louis Children's Hospital. She had the results of Grace's whole exome sequencing test that had been done four months earlier in July. She patiently explained to us that Grace had an ultra rare genetic disorder called INAD (infantile neuroaxonal dystrophy). It's a disease that is characterized by a build-up of iron and other toxins in the brain and on the nerves, which causes a loss of all nerve function, and is always terminal. At that time, there were no treatment options or a cure. We were told just to continue doing therapy with Grace and making the best of the time we had with her. 

I was at the Ariston that Thursday because as most Thursdays, I had lunch with my mom at the Ariston. This particular day, I asked her if we could sit in the back room away from the crowded lunch spot. And I tearfully told her what we had learned, which is probably one of the hardest things I have ever had to do.  Kyle didn't join us for lunch that day, but he made a similar phone call to his mom, and we very gradually told family and friends. Kyle would eventually write a column about it for the paper, and we soon found out what a generous and supportive community we live in.

One of the most devastating statistics about INAD is that most kids don't live to see their tenth birthday. And while that's not always the case, we have seen quite a bit of regression in her condition over the past year. Grace was only three when we found out she had INAD, and it seemed impossible to believe we might only have seven years left with her. This fall, she turned eight, and while no one knows what the future holds, our days with Grace are numbered.

Although we knew that Grace had global delays in her development, like the fact that she never learned to walk independently or say more than a handful of words, therapists and health care providers thought for awhile she would be able to catch up on her skills. Kyle had dreams of her being on the United States women's national soccer team or being president of the United States someday. More realistically, he had dreams that she would go to high school sporting events with him to help him take stats, loving sports just as much as he does.  I always hoped she would excel in school and maybe someday want to help us at the paper, making a difference in her community. But five years ago today, all our dreams for Grace, whether they be ballet classes, playing in volleyball games or just saying "Mommy, I love you," were gone.  I know how much Grace loves me, but I will never get to hear her say those words.

I was having a particularly hard time one night in our kitchen, and Kyle looked at me and told me that if I didn't figure things out, I was going to miss everything that was great about Grace. At the time, it probably made me really mad at him, and was the cause of a fight. But it's kind of become a family mantra.  You see, after her diagnosis, I spent a lot of time grieving for the dreams I had for Grace, dreams that would never come true. But Kyle was right. To continue grieving for those dreams meant I would miss all the wonderful things about Grace. And just because none of my dreams for her wouldn't come true, didn't mean that life still couldn't be wonderful.

Life's simply not fair. It never will be, and we may never know why things happen. Marriages fall apart. Kids get sick. Jobs fall through. Life is hard, and everyone faces different challenges. It's a good reason to be kind to everyone you meet because you never know what challenges they are facing. 

But despite all those challenges, we find there's always a reason to be happy every day. Just last month, we posted our 2000th #foreverhappydays photo. For the math majors in the room, that's almost five and a half years. I would be the first to admit that some days life's challenges make it incredibly hard to post a #foreverhappydays photo. And when I look back over the days, I can always tell when we had a particularly hard day. But we kept trying and we keep going. 

Five years ago today was probably the single hardest day of my life in letting go of all the dreams I had for Grace. But I'm so glad that it doesn't keep us from living our best days with her. Remember, "it does not do to dwell on dreams and forget to live."


Friday, April 19, 2019

Dancing Queen Of The Softball Field

Sometimes you have to make sacrifices to get what you want in life. Mary has always told me at work that you do the things you don't want to do, so you can do the things you do want to do. I've also learned that sometimes you do the things you want to do, consequences be damned.

Family photo at the Father Daughter Dance
Kyle and his beautiful dates
This weekend was a little bit of the latter as we managed to cram a week's worth of memories into two days with the daddy/daughter dance at Lincolnwood and the Grace-Filled Journey Game at Purdue Northwest University. The trip featured plenty of long drives and short nights, but looking back we wouldn't have changed a thing.

Kyle, Grace and the dance committee
The daddy/daughter dance at Lincolnwood has been one of our favorites since it began four years ago. The second one was particularly special for me as I got to celebrate with not one, but two daughters as Charlotte was just a few weeks old. The night is always a little bittersweet, especially watching the other girls run around, something Grace should be doing if it weren't for this terrible thing called INAD. But ultimately, it's more inspirational than anything as I watch the community I love come out in droves in honor of my little girl.

Kensey and Charley
This year was no different, with 70 young ladies and their dates in attendance, including my two princesses. With a western theme this year, Charley sported her boots, while both girls wore their special Bisous For Leo dresses we ordered from Pixie Lane. A portion of the proceeds of the dresses, made of a soft black fabric adorned with "kisses", go to the INAD Cure Foundation, which supports studies like Dr. Kotzbauer's at Washington University in St. Louis. They looked amazing and the dresses were a huge hit.

While we didn't spend a lot of time dancing, we did spend a lot of time on the dance floor as Charley was in heaven running around with my cousins Kayley and Kensey, who donated their time to the event along with my other cousin Katelyn and my aunt Angie. They've been at every dance too, which means the world to us. 

The best part of the dance is what the proceeds go to. The group that puts on the dance decided to start a scholarship in Grace's honor for students going into the therapy or medical or special education fields. Reading the essays for the scholarship is always inspiring and we are proud that these talented and caring young men and women are representing Grace so well.

Hanging out with the Purdue Northwest softball team
As the night wore down, we made our way to my parents' house, where we fed Grace supper. Originally we thought about feeding her at the dance, but we opted to just enjoy the moment and get a slightly later start for the next part of our journey. Rather than wake up early and head north to Hammond, IN, about a four hour drive or so from Hillsboro, we decided to make the trip after the dance so the girls could sleep in the car. We hit the road about 9:30 p.m. from Mom and Dad's and made it to the Hampton Inn in Tinley Park around 1 a.m. Traffic was nonexistent and the girls slept almost the whole way, which gave Mary and I some time to catch up. I like to drive, but I'm extremely lucky to have such a great co-pilot on long trips.

Charley helping Coach Stansell with the line up

Being just a half hour away from the field allowed us to sleep in, or at least as much as you can with a two-year-old ball of fire like Charley Danger. Still, we managed to stay in bed until after 8 and took our time getting ready to make the final drive. After a quick lunch at Buffalo Wild Wings, where Charley showed that she has her daddy's skill at the claw machine, we made our way to the field.

Pride Coach Niki Stansell had told us that they had Grace-Filled Journey sunglasses and bracelets to hand out at the game, so we made sure to pick up ours. They came in handy as the weather was fantastic for the game, a lucky break since Hammond actually got snow the following day and Purdue Northwest called off their scheduled doubleheader.

Charley helped Grace with her first pitch
We found Coach Stansell and our buddy, Pride shortstop Tessa Steffens, after that to see what they had planned. I had the pleasure of covering Tessa when she played for Litchfield High School and the support of her and her parents, Marty and Kara, have made these Grace games at Purdue Northwest possible. 

Tessa giving Charley a signed ball for Grace
Like the year before, the plan was for Grace, Mary, Charley and I to join the team on the field after player introductions, then for Charley to throw out the first pitch. What we weren't expecting was the Dangerous One to latch on to Coach Stansell and join her for the line-ups at home plate. Charley is very much a mama's girl and usually doesn't let Mary get far from her sight, but in this case, she seemed perfectly at home in the middle of the action.

Charley giving high fives to the players
While we waited for the introductions, we watched the players get ready for the game, except Charley of course, who ran full tilt into center field, claiming Dowling Park as her own. I tried to prep her for her big first pitch, but she refused to even touch the softball I tried to hand her. Of course when the time came for the real thing, she rocked it, sprinting to within a few feet of Tessa before lobbing a perfect strike. I may be biased, but I'm pretty sure she's the next Jenny Finch. 

She and Mary then went down the line and gave high-fives to the Purdue Northwest players, or at least some of them as Charley played favorites and shutout some of the Pride. After the national anthem, we found some seats behind the plate and settled in for the first of two games.

As good as the weather was, the Pride were even better as they swept both games from Ferris State. I got to hang with Grace for the first game, while Mary tracked the ever-in-motion Charley Danger around the park. Mary got her break in game two, when she was able to just sit back and feed Grace while watching our team continue to succeed. I got to watch part of that game too, but took one for the team and took Charley to the van for a nap after the opening inning. She made it all the way through the first song in her Frozen dvd before zonking out for an hour, waking up just in time to see the Pride put a bow on the second win.

Snuggling at the game.
After the game we said our goodbyes and took a few pictures, with a hope to return again next year. Tessa graduates this year, but the game has become one of our favorite events and we will take Coach Stansell and Purdue Northwest up on their hospitality as long as they'll have us.

Grace was all smiles to get her photo taken with Tessa after the game
The drive home was filled with more naps and more conversation, with a pit stop for pizza in Bloomington. We even got to share our story with some new friends at the table next to us. We are always touched when someone asks about Grace and we love to share her story. She inspires us a lot and hopefully she can do the same with our new friends, who we gave a couple Flat Gracies.

Family photo before heading for home

It was late when we got home, but it was more than worth the limited sleep for all the memories. Ultimately, the weekend was kind of what I dreamed for Grace and for Charlotte when I found out we were having girls. I hoped they would be able to do what they wanted in life, whether that be the princess on the dance floor or the warrior on the playing field. I know that's probably not going to be possible for Grace, but God has given her a different mission and she is definitely both a warrior and a princess. For Charley, I just want to keep surrounding her with good role models, strong, smart and talented women like the group that organizes the dance, my cousins, Tessa and of course, her mom and Grace. And I'll make whatever sacrifices I need to to make that happen.


Monday, April 8, 2019

A One-Month Update

It seems hard to believe that we have already passed the one-month check ins as part of the clinical trial last month.  Some days, it seems like it’s been so long since we have been to New Jersey, and other times, it feels like we just started the trial.

But one month has already come and gone. After the first 30 days, we switched from two tablets twice a day to one tablet three times a day. Grace can’t swallow tablets, so we pierce them and squirt the liquid into her mouth. And I’m happy to report only one injury when Kyle poked himself in the hand trying to get it open. We consider that a win. 

Also part of the clinical trial, we have to make a set of four two-minute videos and submit them to the study. They include feeding, interacting, bathing and sitting/standing/walking. Although it’s kind of a challenge to do the videos, mostly from a logistics point (two-minute videos take up a lot of space on my phone!), I think it will be a great way to track progress in the study.  

Shortly after Grace started taking the study drug, we noticed more vocalizations, more smiles, more alertness and some trying to move her arms. That was very similar to what other families in the study were seeing, and although those are very small things, we consider them big wins in our household, especially the smiles.

But I did notice another improvement when I made one of the one-month check in videos. Although Grace cannot sit, stand or walk on her own, you have to document that in a video. So, I sat her right in the middle of our loveseat, where her back was supported, but not the kind of support she is provided in her wheelchair. We’ve propped her up there in the past for photos, and I honestly expected she would immediately topple over to one side or the other, which is still probably important to document. However, much to my surprise, Grace sat up for the entire two-minute video, moving her arms and her head just a little as well. She tipped over just after the two-minute mark, and I have to say I was completely shocked. It’s nearly impossible to know if that’s an effect of the drug or just a good day for Grace, but I will always take small victories.

We are especially grateful to everyone who has supported us on our journey with the clinical trial this year. From those who have provided financial contributions for travel or other resources in helping us figure out exactly what we are trying to do, we feel truly blessed. You guys make life great on this Grace-Filled Journey, and I can’t wait to see what improvements the next video might show. 

And while we know this isn’t a cure for INAD, and likely won’t restore Grace’s health completely, we have already seen improvements in her quality of life, which is an awesome win for our family in the fight to #BeatINAD.


Sunday, March 17, 2019

Thank You For Being A Friend

Thank you for being a friend. Every time I have stopped to think about our church’s pancake fundraiser, I can’t help but think of the theme song from the Golden Girls. And I keep singing it over and over again in my head, because we really, truly are blessed to have such amazing friends.

Family photo at the pancake and sausage benefit.

Some of the decorations in the church fellowship hall.
One of our favorite photos of Gracie Lou!
Each year, our church hosts a pancake and sausage breakfast as a fundraiser for someone in the community, and this year, they asked if they could host it for us to help offset the travel costs of taking Grace to the clinical trial in New Jersey. Although sometimes it’s hard to be accepting of such generous thoughts and gifts, we agreed, mostly because it is a HUGE help to us in paying for the travel expenses, which add up fast, even when you’re frugal!

Grace's friends colored Beat INAD pictures for the wall.
Toppings for the pancakes.
Not that we arrived when it started first thing in the morning, but the church’s fellowship hall was absolutely beautiful. They had purple balloons on every table, and special Grace-Filled Journey placemats. Kids in the church’s preschool program and Grace’s kindergarten class colored Beat INAD pictures that hung on the wall in one corner of the room. They even set up a special coloring table where kids attending the breakfast could color their own pictures and hang them on the wall. We especially liked a photo booth type station where kids and families could get their photo taken with Flat Gracie.

Charlotte and her Mickey Mouse pancake.
I just happened to check Facebook when I was getting ready in the morning, and some of our friends had already been to breakfast and had tagged us in photos. It was so much fun to see them enjoying themselves and a really special community event.

Volunteers from the church wearing new Grace shirts.
Although breakfast was served starting at 7, I would say we arrived sometime after 9:30. It takes a little while to feed Grace in the morning, and most anyone that knows us, knows we don’t see 7 a.m. very often! 

Grace and her teachers.
Since it was raining, Kyle let me and the girls out underneath the awning and some of her former classmates were already waiting to see her. She had big smiles when Hazel and Kendall came over to say hello. And we enjoyed visiting with all those who came while we were there.

Grace and her friends Tim and Kris Carpenter.
Grace and some of her friends at the breakfast!
I have to say the food was fantastic as well. We loved the pancakes and sausage, and Charlotte even got a Mickey Mouse pancake that they made special for the kids who came. I think her dad ended up eating most of it though, as there was WAY too much going on for Charlotte to care anything about eating.

Kinsley Trader saved $100 of her own money from working to give to Grace.
 One especially touching moment was when Kinsley Trader, a junior high student in Hillsboro, brought Grace the money she had herself saved to donate. She had been working hard in her Uncle Matt and Aunt Alora's food truck and wanted to save her money to donate. Her mom told me she made a thermometer chart so she could keep track of her goal to raise $100. How amazing is that!!

Hanging out with my mom and dad.
After we ate, we just enjoyed chatting with our friends who came from all over the county to support us. Some came over to the table to get their picture taken with Grace. Others enjoyed visiting while Charley and I mingled around the room. But that entire morning, I just had such an overwhelming feeling of gratitude for everyone. From those who came early to set up and cook, to those who served and cleaned up, and of course, all those who came to eat, we feel truly blessed.

Charley coloring pictures with Dahlia and Demi Maass.
They announced in church the following morning that the breakfast raised about $5,700. Wow! Can you believe that?! We were so humbled, and that money will definitely help us offset the travel expenses we incurred in our first two trips out east, and we will save the rest for our return trip in August.

Grace's friends Lucy and Frankie in the photo booth.
So, to everyone who helped out that morning and to everyone who continues to follow our story and help us raise awareness for INAD, thank you for being a friend.


Thursday, March 7, 2019

Team Grace

Team Grace: Because some of the best athletes know that it’s always about more than just a game.

Over the past five years, countless teams have shared in our Grace-Filled Journey and invited Grace to be part of their team. From local junior high and high school teams, club teams, college teams, and even one Major League Baseball pitcher, we feel pretty blessed for the opportunity to raise awareness through sports.

The Lady Hiltoppers gave Grace one of their state medals.
Holding her state medal.
 In the past week alone, four teams have found a way to recognize Grace through their efforts. And that’s just the past seven days.

It started at the Orlando International Airport. I happened to be wearing one of the t-shirts from the Grace-Filled volleyball tournament last year, and two girls in line asked me if I was a volleyball player. After Kyle stopped laughing hysterically at their question, we had the chance to tell them about Grace. Turns out, they were part of a women’s rowing team at Johnson and Wales University in Rhode Island and they had a spring camp down in Florida. They wanted to know more about our story, so we shared a Flat Gracie with them and told them about our blog. We even managed to take a photo in the airport before we went our separate ways.

Members of the Johnson and Wales University women's rowing team and Flat Gracie.
When we returned home, we took the girls to the IESA seventh grade volleyball sectionals in Nokomis. Kyle’s cousin is a member of the team, and we went to cheer them on. When the team won regionals the week before, they posed with Flat Gracie for their team trophy photo. It was a fun game to watch, and we even had a connection to the opposing team, who also wanted to get her photo taken with Flat Gracie. When it came time for the team photo with the sectional trophy, the Lincolnwood coach came over and asked if Grace could be in it, as part of the team.

The very next night, we had been invited to bring the girls to the Hillsboro High School girls basketball season banquet. Coach Tuetken had texted Kyle the week before that the senior girls wanted to give Grace one of their state medals. After the meal, the five senior players got up to present a medal to Grace (who slept through the whole thing!) Senior MVP Sammi Matoush thanked Grace for being a special part of the Lady Toppers’ journey and for allowing the team to be part of hers. This momma might have cried just a little bit. I’m so grateful for such amazing young people with big hearts and a beautiful little girl, who shows the world what it means to be courageous each and every day.

Grace with the sectional champion Lady Knights volleyball team!
And before the week was done, we received a message from Kenny Lauderdale, a men’s soccer player at Rockford University (and an alum of the Grace Cup), inquiring about a Flat Gracie to take back to school and take a photo with his team. They want to be part of the journey too.

And like I said before, that’s just one week. There have been so many special teams and great athletes over the past five years. And we have tried to take Grace to as many games as we can, so she can be a part of all these amazing events.

Grace hanging out with Mary, who played on the Hardin-Calhoun seventh grade team.
Earlier this year, we got a letter from one of our favorite Team Grace members. She talked about what she had learned being part of this Grace-Filled Journey and why she wears her gracelet all the time. Even though she can’t wear it when she plays, she wrote that she put it on her water bottle to help her remember that it was just a game, and that she’s blessed to have the opportunity to play, something that’s truly not guaranteed for everyone.

Lincolnwood Lady Knights eighth graders and Flat Gracie.
We know that it’s highly unlikely Grace will ever kick a soccer ball, score the winning basket or run the one-mile race, but in her short seven years, she has already taught so many of us about the things that really matter in life. It’s fun to play, and even more fun to win. But at the end of the day, it’s always still just a game. And the things that matter most are the players who take some of these lessons to heart.

No matter the mascot or the team colors, all the players on Team Grace will always be the biggest winners in our book!


Wednesday, March 6, 2019

A Benefit Breakfast

If you’re anything like me, you’re already thinking about your next meal and and how you’re going to get away with not cooking it.  Well, on Saturday morning, we have a great plan already set in motion for you!

Our church family at the Hillsboro United Methodist Church (537 Rountree St.) is hosting its annual pancake and sausage breakfast as a benefit for Grace and to help our family offset the costs of taking her to New Jersey for the first-ever clinical trial.

Charlotte loved her Mickey Mouse pancake last year.
Before I get too far along, here’s the details on how you can participate. Church volunteers will be serving pancakes and sausage in the fellowship hall from 7 a.m. to noon on Saturday, March 9. Donations will be accepted for the meal. And I’ve heard there will even be Mickey Mouse pancakes for the kiddos!

We feel so blessed that our church family has offered to help us out this year. For many years now, our church has hosted this breakfast and raised funds for local families or groups. This year, organizers knew we would have added expenses in taking Grace to New Jersey so she could be part of the clinical trial. This year, we will have three trips out east and one next February at the completion of the trial.

The trial itself is free for Grace to participate in. We don’t have to pay for any of the medicine or any of the testing or appointments that go with it. However, we do have to pay for the travel to get out there, which has included gas, hotel stays, airfare and meals. We try to be pretty thrifty when we can, but this benefit will definitely help us out in making sure we have everything covered.

It’s always a really neat day too. When Kyle and I first got married, we used to volunteer on the Friday evening before the benefit to help set up tables and get everything ready. You see, Kyle and I aren’t exactly what you call “early risers,” so the Friday night set up worked much better for us than actually having to be there by like 5 a.m. (which we almost never see . . . )

Since having kids, it’s gotten harder for us to volunteer, but we always try to make it to eat there and support our church and the community they are helping that particular year. Last year, it fell on the same day as Charlotte’s first birthday party, so we didn’t get to eat there, but we managed to get a to-go order and eat at home.  She was thrilled with her Mickey Mouse pancake, and I’m sure she will love it just as much this year!

Our family is planning to be there that morning to enjoy some awesome breakfast and say thanks to everyone who continues to support us on our Grace-Filled Journey. You probably won’t find us there when it starts at 7 a.m., but we look forward to being there. We hope to see you there too!


Monday, March 4, 2019

Happy Tenth Anniversary

As we rode into Walt Disney World last Thursday, I told Kyle it was just about the same time that we were getting married ten years earlier. In some ways, it seems hard to believe we’ve been married for ten years, while other times, it’s hard to remember a time that we weren’t together.

Anniversary Dinner at Cafe Narcoosee's
This year, we celebrated with a three-day trip to Orlando, FL, to visit the Wizarding World of Harry Potter at Universal Studios. We started talking about taking a trip to celebrate sometime last year, and it seems like we talked about a million places. Kyle lobbied for New York City in the beginning because he wanted to take me to see a show on Broadway. But ultimately, we decided that Universal Studios was the perfect place to mark ten years together. And thanks to our friend, Laura Wagahoff at It’s a Small World Adventures by Laura, it was perfect. Extra special thanks to Grandma and Grandpa Galer for keeping the girls so we could enjoy a weekend getaway.

All dressed up to celebrate our tenth anniversary.
Laura did all the booking for us, and somehow, we’ll say that old Disney magic, everywhere we went, people knew it was our anniversary. We got purple and orange Happy Anniversary balloons (to match our Magic Bands) when we checked into the hotel, along with a photo signed by Mickey and his crew. The hotel manager even left a card on our bed with a chocolate treat in celebration of our anniversary. I would definitely say we felt spoiled the entire time we were there.

Getting spoiled at dinner.
Although we stayed on Disney property, we hadn’t really planned on visiting any of the Disney Parks, so Laura found us a romantic restaurant called Cafe Narcoosee’s at the Grand Floridian to celebrate on our anniversary. We took a bus from our hotel to the Magic Kingdom, and then Kyle suggested a boat ride across the lagoon to get to the restaurant. Our table was right on the water and the food was amazing. We capped off the evening watching the fireworks at the Magic Kingdom.

Visiting the Wizarding World of Harry Potter.
We spent the next day wandering around two parks at Universal Studios. And from the “caraoke” on our first Uber ride to the butterbeer at the Leaky Cauldron, the day was nearly perfect. We enjoyed walking around all the Harry Potter sights and doing some shopping. And even though we were way too chicken to ride the Harry Potter roller coasters, we found a few rides in the Dr. Seuss section that were more our speed. I even beat Kyle at air hockey in the arcade.  To end our day, we found an Italian restaurant just outside Universal that reminded us of our honeymoon to Italy.

Drinking butterbeer at Universal Studios.
All too soon, it was the final day of our trip. We slept in and enjoyed some time at Disney Springs. Lunch at Frontera by Rick Bayless was one of the best meals of our trip, and of course, we did way too much shopping for the girls again. Before we left, we stopped for some gelato, which also reminded us of our time in Italy ten years ago, and a visit with one of my high school friends.

Throughout the weekend, Kyle and I talked about other anniversary celebrations. We moved into our new house the day before our first anniversary, so that one was extra special to us, celebrating in our first home. My mom brought over dinner, and we dined by candlelight before eating some not-so-delicious year-old wedding cake. I’m not sure who started that tradition, but I think it’s one we could live without!

Lunch at Disney Springs on the last day of our trip.
Other years are fuzzy. TimeHop reminded me that Kyle made me breakfast in bed of French toast a couple of years. And we love to eat out at the former Church Street Pub and Canton Inn. We’ve taken a couple other trips to celebrate over the years, just not on our anniversary date. We spent one cold weekend in Madison, WI, to see the Avett Brothers, and another warmer weekend in July to see the same band at Red Rocks in Colorado.

It’s kind of funny that we had trouble remembering what we did on our anniversary the previous nine years. And we didn’t always celebrate on the exact day. But we always make time to celebrate both our love and our marriage.

Having some Italian gelato before heading home.
When we returned to our hotel room after dinner at the Grand Floridian, we watched a video of our wedding highlights on Facebook posted by Video Edited Memories. The video included our vows, “in good times and bad, for richer, for poorer, in sickness and in health.”  I can’t say that when anyone ever gets married they feel like there will be bad times. I just remember being so incredibly happy that day, thinking that marriage would be like all those romantic comedies I watched all those years.

Marriage is definitely not the simple “happily ever after” portrayed in all those movies. Marriage means compromise (which is always hard). It means being there for the other person when he or she is having one of those bad times. And it means always remembering why you fell in love in the first place.

So, here’s to the next ten years of marriage, and the next 20 after that. I can’t wait to see what adventures await us.


Monday, February 25, 2019

Appointments and Adventures

Auguste Rodin said, "nothing is a waste of time if you use the experience wisely."

Today, our adventures took us to St. Louis Children's Hospital where Grace had an appointment with her neurologist. Over the winter, we had noticed Grace had been having some seizure-like activity, and we wanted to get it checked out.  We just got a new neurologist last November, and we really liked her. But she was out on maternity leave until recently, so today was the day we got together.

As part of the clinical trial, Grace had her first EEG done, and it showed some baseline seizure activity. Grace's regular doctor suggested we start on a low dose of seizure medicine until we saw her neurologist, as a precaution for aspiration.

I have always loved this butterfly at Children's Hospital. Just reminds me of hope.
At the appointment today, her neurologist suggested we continue the medication plan, and it gave us a chance to talk to her about the clinical trial. We feel so lucky to have her to bounce ideas off of, and she really understands the way we choose to help Grace live each and every day to the fullest.

And because we like to make the most of our trips to St. Louis, we usually plan for something fun. Sometimes, we go to the St. Louis Zoo or the Magic House. Other times, we stop by to see Dr. Kotzbauer for an INAD research update or Dr. Omurtag to show off how much Charlotte has grown!

But today, was an extra special visit. Our friend Caleb is currently at the Siteman Cancer Center battling osteosarcoma, and we had a chance to stop by and visit with he and his awesome wife, Bethany, who works with us at the paper.  It was such a good time chatting and laughing, and we continue to pray for a miracle as Caleb continues his battle against cancer.

Delicious lunch at Pappy's Smokehouse.
Then, we stopped at one of our favorite haunts for lunch. Although Grace Meat + Three is always one of our favorite stops, it's closed on Mondays. So, we picked Pappy's Smokehouse, and I got my usual BBQ Spud (with enough left over for lunch tomorrow). Everyone there is always so friendly and helpful, and there's plenty of room to feed Grace. 

So, while doctor's appointments can sometimes be a drag or just one more thing to do. We always try to make the most of our time together on this Grace-Filled Journey!