Saturday, January 11, 2020

Another Grace Game In The Books

It was a great day for the Lady Blues of Illinois College as they picked up a big 81-48 win over conference foe Beloit from Wisconsin. Hillsboro native Carly Cameron even picked up a double-double with ten points and ten rebounds in the win.

But while it was a great game for the senior on the court, it was what happened on the sidelines that made it truly special.


At Carly's suggestion, Coach Jennifer McCormick and the Lady Blues hosted a Grace game this afternoon in the Bruner Center at Illinois College to raise awareness for INAD and funding for research.  Carly and her friend, Lindsey Storm, both former Lady Hiltoppers who have always been some of our biggest supporters, came by over Christmas break to see the girls. Carly told us that she's been wanting to do a Grace game with her team since arriving at Illinois College, but it seems that the stars aligned for a game this January.


We told Carly that we thought a Saturday game might work best for us, and together, we picked Jan. 11, when both the men's and women's teams hosted Beloit. After Grace's second admission to the hospital last week, we weren't entirely sure we would be able to bring Grace, but we promised that Kyle and Charley would go for sure. Fortunately, Grace was discharged from the hospital on Tuesday and had a really good week at home, and we decided to make the trip together.


I don't know how many Grace games we have been to as a family in the last five years, but they will always be some of my favorite memories. That's why we really wanted to make this trip a special one. From basketball to baseball and softball to soccer, we have loved meeting players from all over and sharing Grace's story. Classified as an ultra-rare disease, sharing Grace's story helps us bring more awareness to this devastating disease. And the more people who know, the better.


That's why we were just thrilled when Carly told us she and her teammates wanted to host a Grace game this year. And even more exciting that some of our family made the trip with us. Although there was some snow in the forecast, we made our way the hour and a half to Jacksonville in plenty of time for the game.


When we arrived, we saw the team hung a huge BeatINAD banner in the gym. In addition, instead of collecting admission for both of today's games, the school accepted donations for the INADCure Foundation, and brought in nearly $500. We continue to be so humbled and honored by people's generosity on our journey.


As we made our way down to the gym, we got a big wave from Carly and Coach McCormick stopped by to meet us. Meanwhile, Kyle was interviewed by one of the local television stations about our story, which was another great way to raise awareness. And we enjoyed sitting with our families for the game.

Just before they announced the starting line-up, our family was invited to midcourt for a special presentation. Carly and fellow senior Grace Yaunches presented our Grace with a jersey signed by all the members of the Lady Blues. Even cooler, after the game, we found out that jersey belonged to another former Lady Hiltopper (Jaicie Halleman), who went on to play for the Lady Blues as well.


It was an awesome game, as the Lady Blues dominated from start to finish. We have always loved going to sporting events together, and this one was so much fun. After the game, we had a chance to meet the team for a group photo, and Kyle told them a little more about Grace's story. We were so touched to see that the players had purple ribbons tied in their shoelaces as well.


She may only be eight years old, but our little Grace has touched so many lives in her eight years, and we are so proud of her for continuing to be an inspiration to so many. Special thanks to Carly and her teammates for helping us raise awareness and helping us make another really great memory on this Grace-Filled Journey.

Wednesday, January 8, 2020

An Unexpected Visit

This year’s holiday season started out just like any other. We celebrated Thanksgiving with both our families and had a wonderful day. We made Christmas cookies with Kyle’s family. Kyle even brought our tree into the living room so we could decorate it.

But on December 2, our holiday season took an unexpected turn. After having a cough for a couple of days, Grace started really struggling to breathe. A quick trip to the doctor’s office meant an ambulance ride to Springfield for our beautiful Grace. Despite Grace’s genetic illness, she has been very healthy over the past eight years, and she’s only landed at St. John’s Hospital in Springfield twice. The first time was more than two years ago and for less than 24 hours. The second was earlier this fall, for about 36 hours. Both were respiratory related, but since Grace has been healthy, she was able to recover quickly.


Kyle and I both assumed this trip to the hospital would be about the same. But we had no idea how sick our Grace really was. From the ER, she was moved to the PICU (pediatric intensive care unit) and diagnosed with RSV. At that point, she really struggled to breathe, and was placed on a bi-pap machine for a few days and later a high-flow nasal cannula.



But our Grace is a fighter, and wasn’t ready to leave us just yet.  During our two and a half-week hospital stay, we learned that Grace has episodes of central apnea, where her brain basically forgets to breathe. In most instances, she recovers on her own, or is able to be rousted from the episode by stimulation or a change in position. We also learned that it was no longer an option to feed Grace orally because her risk of aspiration was too great.  We came home on an NG feeding tube (through her nose), with hopes of getting a G tube when she is fully recovered from her respiratory issues. It was pretty scary for me at first, but you can truly do anything you put your mind to, and her feedings have gone really well.  I only tipped the pole over one time, and the feeding bag was closed so it didn’t even spill all over the floor.

With the help of the palliative care team at St. John’s, we were able to bring Grace home mid-December, not really knowing what the first few days would hold. Fortunately, Grace thrived at home, and we had an amazing Christmas and New Year’s with our family and friends. It was an incredibly special two weeks.


Then on Jan. 3, just over one month from her last hospital admission, Grace once again had trouble breathing and we ended up taking her back to the ER in Litchfield, where they discovered she had an infection. Since we didn’t have any oxygen at home for Grace, we opted to take her back to St. John’s where they could make her comfortable. When we arrived at St. John’s, Grace had a very high fever and was throwing up, and the doctor was concerned she was septic.  We asked them to make sure Grace was comfortable.


But our Grace is a fighter. She did great over the next few days with antibiotics and we got to bring her home once again. This time, we do have oxygen at home to keep her more comfortable. It’s been wonderful to be back home with our whole family and enjoy our time with Grace.


We want to give a special shout out to all the doctors, nurses, residents, techs and respiratory therapists at St. John’s Hospital. We loved getting to know all of you during our stay. The hospital is NEVER the place you want to be, but if you have to be at one, let me tell you, that’s the place to be. An extra-special shout out to Montgomery County’s own Aaron Golitko, who was her resident doctor the last couple of days and took extra special care of our Grace.  We are so incredibly grateful to each and every one of you, and it’s been our privilege to get to know you. We know you will keep working hard to take care of all the kiddos who end up there.




Just as it’s always been, the future is Grace’s story to write. We plan to follow her lead and let her be the guide on this Grace-Filled Journey. She’s always been so strong and such a fighter, and we are always proud of her. It’s been amazing to be back home, watching Charlotte take care of Grace, and remembering why it’s so important to cherish each and every single day making memories to last a lifetime.

“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25



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