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

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.