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."

mlh

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.

krh

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.

mlh