Fun In A Fortnight

When I was a kid, my brother and I used to make forts in the living room. They were pretty fancy, usually involving some sheets, the couch and coffee table and some heavy books to keep the sheets from falling down. The books may have fell on my head a couple times. Maybe. I don't really remember.

Grace and I outside Fort Herschelman.

With a rare night off, I decided tonight would be an awesome time to relive my childhood and show off my tent building skills. Mary loved the idea and after work, I got to it. Again, a couple sheets, some clothes pins, a rubber band or two and an unused ab roller and we were in business.

Grace loved playing in the tent. After a little drum practice, she and Mary made their own fort.

The tent took up most of the living room, stretching from the TV to the love seat. It was a little small for me, but short of drilling holes and hanging it from the ceiling (mental note for next time), pretty much everything would be.

Not only did Mary and Grace make their own Duplo fort, but they also made a cage for Bruce.

It took about a half hour to build, every second completely worth it when Mary and Grace saw the end result. We waited until after dinner and Grace's bath to give it a test run, although Mary may have camped out in it while Grace and I were upstairs since I had blocked off all the usable seating. After bath time, with the Nokomis boys basketball game on the radio, the three of us played in the most secure fort this side of Fort Knox.

Family selfie from Fort Herschelman.

Grace really seemed to enjoy it, almost as much as Mary did. After we finished, my beautiful wife said that this was the most fun she'd had in a long time, and by Grace's smile, the same was true for her. This is what I want to give Grace and Mary every day. Big experiences are awesome, but it's the little stuff that makes the difference. It's the day to day joys of life that make it worth living. I hope I never forget the things that really matter... like making forts.

KRH

Back To School

Kyle and I went back to high school today, which is something I swore I'd never do!  However, today's visit did not include math homework, pickleball in PE or English essays. So, I agreed to go.  After all, this visit was all about Grace.

Kyle, Grace and I went back to school to talk to students at Morrisonville High School.

Several weeks ago, Janet Walch of Raymond, a science teacher at Morrisonville High School, contacted Kyle to share with him that she and her students were studying genetics.  She had been talking to the students about Grace's diagnosis and asked if she could share Grace's photo with the class.

Kyle responded that we could do her one better, we would bring Grace to meet her students in person.  It took a little finagling with snow days and legal holidays, but we scheduled a visit on Monday, Feb. 23. 

Kyle is talking to the students, and Grace is charming the crowd, as usual.

It was a great day to go back to school, and I have to admit, we even arrived early!  That's quite a feat for those that know us (and Grace's preschool teachers should probably not count on it for future days).  But since we were a few minutes early, Janet took us to meet some seventh and eighth grade students who had been collecting money for the INAD study.  They presented us with a canister that had Grace's photo on the front, and Grace even gave them one of her biggest smiles. Just by themselves, the middle school students raised over $100 for the study.  We are so truly blessed.

Then it was time to meet the high schoolers to share Grace's story.  Since several classes of students were interested, they set up the library for our visit. Grace had the place of honor, a big green bean bag chair on top of a table.  She sat there the entire time enjoying the treats the kids had for her, and I have to say she relished being the center of attention. Grace got a huge MInnie Mouse bag with new baby dolls, Smarties, suckers and a singing Minnie Mouse microphone that was her favorite.  

Grace was thrilled to be part of the presentation today, and especially loved her new Minnie Mouse microphone.

After all the students came in, Kyle and I had the chance to share our story from the very beginning, talking about different doctors, genetic testing and therapies.  The kids were very attentive and asked lots of really good questions.  They have been researching INAD, and really knew a lot about Grace's diagnosis.  

Most of all, they were excited to meet Grace.  After talking to the students, we posed with them for a group photo, and Grace absolutely loved when the kids came over to talk to her.  She just smiled and smiled. And we made sure that all the students had their own "Gracelets."

And to top off an awesome morning, the Morrisonville High School students and staff had also collected funds for the INAD study.  The sophomore class donated $200 and the juniors and seniors each donated $150.  From the junior high to the high school, they contributed nearly $950.  Talk about amazing.  

We were welcomed to the library by this beautiful sign.

We were so honored the students and teachers wanted to share in our "Grace Filled Journey," and hope we have the chance to go back again sometime.

MLH

Finding The Formula To Happiness

"When life gives you a riddle
But won't give you a clue,
And solving it yourself
Is way too hard to do,
Well you may find that the answer lies
Right in front of you."

Last November, life gave us a pretty big problem in finding out that Grace had a neurodegenerative genetic disease. While that problem sort of still seems insurmountable at times, Princess Sofia was right, the answer was right in front of us.

Grace got a Disney Junior CD for Christmas, and this catchy song keeps me singing along whether or not Grace is with me.  "Friendship is the Formula" comes from the Disney Junior show Sofia the First, a princess with a big heart for friendship

"If you have something tough to do,
Just gather up a friend or two.
‘Cause friendship is the formula,
Just me, plus you, and you."

After Kyle's column ran in December, we found out just how many friends that we truly have, from Montgomery County and beyond.  In the first few days after it ran, we got dozens of notes, e-mail messages and even phone calls to tell us people were praying for us and would support us every step of the way.

Grace got cards and stickers in the mail, and we got such special cards from all over the country. I have always loved getting mail, so it was so much fun to go to the mailbox each day to see what was waiting for us.

One friend made a very special gift just for me. She crocheted a prayer shawl, and wrote a note explaining that she made it with soft yarn and prayers. The note also talked about the colors she chose and what each one meant. Red is for love, courage and warmth, maroon is for bravery and strength, magenta is for spirituality, brown is for steadfastness and purple is for truth and wisdom. Every time I see it, it serves as a special reminder that so many people are praying for us.

Shortly after the first of the year, mom and dad ordered the purple "A Grace Filled Journey" prayer bracelets, and we have so enjoyed seeing the photos of people wearing them, and knowing all those people are keeping us covered in prayer.
And after showing us love with your prayers and your kindness, Montgomery County stepped up in a big way, with your donations.

After the first of the year, we joined a campaign called "ICan for INAD," started by other families whose children have been diagnosed with INAD. They may be few in numbers, but they make up for that in heart and big dreams.

We are trying to raise $150,000 over the course of the next two years to help fund a study, practically in our backyard at Washington University. Kyle and I were fortunate enough to meet the researcher in person. He shared with us how he came to study INAD, as well as his upcoming project, which he is very optimistic will help to find treatment options for INAD kids.

In less than two months, our friends and family in Montgomery County (and beyond too) have helped us to raise nearly $10,000 that will be added to the funding that other families are collecting. Talk about humbling.

As we sat discussing the study with the researcher, I don't pretend to understand much of the science he talks about, but I know that we can help raise the funds to keep it going. So many of you have already helped, and other fundraisers are in the works as well.  Your generosity continues to inspire us, and together, we can!

You see, when you have something tough to do, just gather up a friend or two. Just me, plus you, and you. We thank each and everyone of you who have joined us on this "Grace Filled Journey." We couldn't do it without you!

MLH