Snow Much Fun

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

Our favorite snow angel!

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

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

Grace and her daddy building their snowmen.

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

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

Our snowman!

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

Daddy takes a turn pulling Grace in her sled.

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

Mommy liked pulling Grace too.

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

It might not be the most conventional sled, but it worked!

Our last winter experience was actually one we did with her during her first snow, making a snow angel.  I think it was one of her favorite parts because she giggled as I moved her legs to make the bottom and her arms for the wings.

Making a beautiful snow angel.

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

Snow much fun!

MLH

A Lesson in Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MLH

Disney Day Out

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

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

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

Princess Grace in her new Queen Elsa costume and her new star wand.

It's not that I even like Frozen that much. I was just super excited to share such a neat experience with my little princess.

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

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

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

These little princesses are ready to see Frozen on Ice!

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

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

Princesses cheesing at intermission, along with Bruce.

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

All of our favorite Frozen characters were there!

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

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

Sharing a special day with my favorite Frozen princess.