Let's Go Blues!

 Ever since we first found out that Grace had infantile neuroaxonal dystrophy, we have dedicated as much time as we can to give our little girl as many awesome life experiences as possible. As the calendar flipped over to 2018, we are already off an running with that mission. While we aren't the biggest hockey fans on the planet, going to a St. Louis Blues game has been on our short list of Grace experiences for some time. I don't really follow the Blues, but a number of my friends do and I'm always intrigued by the passion that they have for their team. 

Grace was all ready for her first Blues game with a new shirt!

For one reason or another, we've never made it to the Scottrade Center to catch a game in person. We've been able to take Grace to several St. Louis Cardinal games, college football and basketball games and other memorable events, but the Blues' scheduled hadn't meshed with ours yet. That streak came to an end on Tuesday, Jan. 2, when we finally made it to see the Blues take on the New Jersey Devils. 

The tickets were actually a gift from my siblings, who knew that we wanted to make it to a game. To make sure that we didn't schedule anything for that date (it happens a lot with us), my sister Mikaela told us in advance to save that day for something special. Still we had no idea what it was going to be until Christmas Day, when we opened up a present for Grace and saw three tickets to the game. As Mikaela explained, it was a nearly perfect trip for us. The Blues were playing the Devils, who I quasi-rooted for when I was a kid. I loved Martin Brodeur, who was the goalie for New Jersey and later for St. Louis. I still have the jersey, although I opted for a Grace T-shirt for the game instead so not to draw the ire of the St. Louis faithful. 

Family photo after the game!

The game was also Mizzou Night, a special theme night where the Blues gave away soccer-style scarves with the Blues and Mizzouri Tigers logo on them, along with the letters M-I-Z B-L-U, a play on Mizzou's rallying cry. With Mary's love of all things Mizzou and my collection of soccer scarves, it was a perfect fit for us. 

We anxiously waited for the day of the game and headed for St. Louis with the girls after Mary and I got off work. In retrospect, we should have probably left a little sooner, but we're newbies at this so we ran into a little bit of traffic. Or at least I think it was traffic. I've been in parking lots that moved faster. After a slight delay, we parked in a garage down the street from the Scottrade Center and walked as quickly as we could in the frigid temperatures. 

Hanging out with Charley in the second period.

Charley wasn't as excited as me about the new Mizzou scarf!

Once we got in, we went to get our scarves and find our seats. They were absolutely perfect. Mikaela had contacted the Blues to try to find a good fit for our family and came up huge. We were in the third row of the upper deck, with no stairs to go up or down. Our usher helped us store Grace's stroller in the handicap accessible section, which was right next to our seats. 

As we settled into our seats, me holding Grace and Mary holding Charlotte, I was immediately struck by the atmosphere of the game. It was just about to start the second period (yeah, we should have left earlier) and the sounds and sights were amazing. With music and horns blaring, the Blues skated onto brilliant white ice that seemed to illuminate the whole arena. Grace has always loved loud noises and bright lights and she smiled often as the game restarted. 

The only thing better than watching Grace's reaction was watching Charley's. She's one of the most expressive little girls I've ever seen and at 10 months old, a professional hockey game was almost too much for her to stand. She bounced. She smiled. She yelled in joy. It was infectious. It brought a smile to my face and Mary's immediately and to many others sitting around us, including the gentleman sitting next to Charley that she befriended immediately. 

Grace was all smiles for most of the game, taking in all the sights and sounds.

As the game went on, it just got better. We had nachos and Mary fed Grace her dinner (unfortunately Pediasure doesn't make a nacho flavored shake, or perhaps fortunately). I got the chance to hold Charley, which was quite a work out, but a really fun one. The game itself had a little bit of everything, with the Blues coming away with the win in a shootout. Even hockey novices like Mary and I were in awe of some of the things that happened on the ice, particularly Blues' goalie Carter Hutton almost single handedly willing his team to overtime, then a victory. 

After the game we made the run back to the van and got the girls in their pajamas for the hour drive home. Charley, who remained her happy, bouncy self for the entire game, fell asleep immediately, while Grace dozed a little, but stayed awake. I know that Grace only understands a little bit of what goes on around her, but I'd like to think that she was just too excited to sleep on the way home. 

While it's taken us a long time to make it to a Blues game, it won't be our last. I'm not sure we will ever be the biggest hockey fans in the area, although I can't speak for Charley, but the atmosphere and kindness of those we encountered at the game will bring us back someday for sure. As they say at the Scottrade Center, "Let's Go Blues!"

krh

A Year To Remember

It seems hard to believe that it's already time to turn the calendar over to another new year. But even though I put the 2017 calendar in the trash can, it was a great chance to reflect on the joys of the past year, especially the holiday season.

Every year after Thanksgiving, I tell myself that I am not going to get stressed out about the holidays. And every year that's something I fail at. This year was no different.

Matching family Christmas pajamas this year.

We were blessed to celebrate Thanksgiving with both of our families, since both sets live in Montgomery County. It's always so nice to share meals and enjoy being together.

But it wasn't long after that my panic started to set in. For some reason, the holidays, Christmas in particular, tend to be very hard for me. Though I love to give gifts and I LOVE to shop, it's hard to walk past aisles of Barbies, games and puzzles and not be able to put it all under the tree for Grace.

Meeting Santa at the Hutson Christmas.

And I begin to let some sadness about INAD creep into my heart. I wish Grace could be excited for Santa and create a list of things she would love to find under her Christmas tree. I would love to hear her sing some of my favorite Christmas songs. This year, "All I Want for Christmas Is My Two Front Teeth" would have been most appropriate. But most of all, the sadness creeps in not knowing how many Christmases I have left to celebrate with her.  Some days, it takes all I have to go to family Christmas events with a smile, wishing in my heart things were different.

Grace was an angel in the church's Christmas program.

Lighting the Advent candle at church.

But despite some sadness on my part, we generally had a great time celebrating with extended family in the days and weeks leading up to Christmas, and then with our immediate family during Christmas Eve and Christmas Day.  I loved watching Charley interact with her cousins, though I'm pretty sure she will be trying to boss them all around by next Christmas.

Our Minion gingerbread house looks almost good enough to eat!

Kyle and I built our traditional gingerbread house with the girls at home. This year's theme was Minions, and it was tough to keep Charley from putting all the small decorations in her mouth. It's honestly hard to keep Charley out of most things.

Decorating the tree with our favorite girls.

One of my favorite moments this Christmas season was lighting the Advent candle with my Kyle, Grace and Charley at church on the morning of Christmas Eve. Grace and I read the prayer and scripture together and Kyle and Charley did their best not to set the church on fire, which is always a blessing.

Christmas with the Armour cousins and Grandma Virginia.

But it was after church for the second time on Christmas Eve that my heart finally found its happiness.  After checking out some Christmas lights and luminaries, we headed home to open presents with the girls. And we managed to catch the last hour of "It's a Wonderful Life." It's always one of my favorite Christmas movies, and I can't help but tear up every time Harry Bailey toasts his brother, George, "the richest man in Bedford Falls."

The girls Christmas portrait from our friend, Ken Meade.

As I snuggled Charley sound asleep in my lap, I realized that we really do have a pretty wonderful life. If I could make Grace better, I would do it in a heartbeat, no matter the cost. But the long and short of it is, that I can't. I can't change the fact that Grace has INAD, or that it's devastating the way it steals everything from her little body.

Christmas with the Galer family.

Christmas with the Herschelman family.

But here's what I can do. I can change my attitude about it. Most of the time, Kyle and I do keep a pretty positive outlook on our situation, but every so often that sadness creeps in and tries to steal my joy, especially around the holidays. For me, the best thing is just to keep going. Just to attend family Christmas events, take Grace and Charley to see Santa (even if Grace doesn't understand), build a gingerbread house, even if Grace can't help. And genuinely live our lives as if everything was normal. Sometimes we have to modify our events so that Grace can be part of it, but I wouldn't have that any other way.

Ringing in the new year with these cute kiddos!

This year, we had the opportunity to ring in the new year with five other families and a total of 13 children. Yes, the adults found out we were outnumbered this year, and we blame Charley. But together we celebrated all the things that are good about life, friendship and family. And when you have so many things to be grateful for, it really is a pretty wonderful life.

mlh

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.


mlh