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."