“How lucky I am to have something that makes saying goodbye so hard.” A.A. Milne
How do you say goodbye? On Wednesday, May 19, we lost our beautiful daughter, Grace, after fighting INAD (infantile neuroaxonal dystrophy) for nine and a half years.
When I think about goodbye, one thing that always comes to mind is something my dad used to tell us at bedtime when we were growing up. My dad worked many nights in the pressroom at the paper, so he used to tell us, “See ya in the next world, don’t be late.”
It would be years before I realized that was lyrics to a Jimi Hendrix song, but it’s always been a fond childhood memory.
And it’s one I’ve been thinking about a lot in the past couple of weeks.
We were so blessed to celebrate Grace’s life with us here on Earth for almost ten years. Her beautiful smile could light up the room. When she was able, her laugh and her happy noises were just incredible. I will always treasure a video Kyle sent me of Grace saying “ma ma ma” over and over again. It was one of the few words she was ever able to say, and I think it broke my heart when she wasn’t able to say it anymore.
Grace was diagnosed with INAD in November 2014, and that day they told us that most kids with INAD don’t live to see their tenth birthday. I can remember sitting in that doctor’s office not even being able to fathom that we would lose her someday.
But as time went on, Grace continued to lose skills and her condition regressed. INAD causes a build-up of toxins in the brain and on the nerves throughout the body, and she just wasn’t able to fight anymore.
After we learned about Grace’s diagnosis, I always prayed for two things. I prayed every day for a miracle cure for INAD, and I still do. I hope one day they are able to find a treatment so families like ours won’t have to lose loved ones. But I also prayed that when Grace was ready, it would be peaceful and that she wouldn’t have to suffer. I wasn’t sure how I would bear that.
Like most things in her short life, Grace passed away on her terms, when she was ready. And it was very peaceful.
So, how do you say thanks?
As it tends to happen in small towns and small communities, word of Grace’s passing spread quickly. Our phones and mailbox have been full of messages and cards, expressing sympathy for our loss.
By that night, purple ribbons were up all over town. But not just in Hillsboro, we saw them all over Montgomery County. Students and teachers from local schools wore purple. Storefronts were decorated in purple. Someone even made sure the drive from our church to the cemetery was full of purple ribbons.
I couldn’t begin to single people out to offer our thanks, because I’m sure I don’t even know all the kindness that has been offered to our family these past few weeks. We just hope everyone knows how very grateful we are.
And I think the thing that warms my heart the very most is that Grace knew she was this loved during her lifetime. For that, we will always be grateful.
So, how do you move on?
This one I’m not so sure about. And I really have no idea where to start.
We have known for almost seven years this day would come. And though we have talked about what we thought it might be like, I don’t think either of us ever could have imagined the loss we would feel.
My sister-in-law shared a quote with me the day before Grace’s funeral that has helped me a lot.
“You just need enough bravery for the next step. Not the entire staircase.”
I keep trying to remember that I just have to keep going. Even when it’s hard. Even when I don’t want to. But that’s important to keep putting one foot in front of the other. Because Grace would have wanted that.
As a caregiver for Grace, my life was full of schedules for feedings and breathing treatments, therapy and doctors’ appointments and just making sure I was always close enough in case she needed something. I think that’s where I feel the biggest hole right now, not taking care of her anymore. I look around the house at all the equipment that I used to wonder where we would find room for, and wonder now how I will ever part with it.
I am sure like with all things, our grief for Grace will be a process. I’m sure there will be good days and bad days. Good moments and bad moments.
But I know that Grace would want us to dwell on the good ones.
Shortly after she was diagnosed with INAD, I was just falling apart at the news. Kyle told me that I had to figure it out or else I would miss all the good things about Grace. Although it led to a huge fight, it’s also always kind of been that “light bulb” moment for me.
We knew that our time with Grace on Earth would be short. But instead of dwelling on that, we tried our best to give her every experience life had to offer. We tried to find happy moments in all that we did. And we got to enjoy all the things that were really great about Grace.
So, I guess the thing we want you to remember about our Grace is that she always lived life to the fullest. She always had a smile. She loved being with her family and friends (and she had some of the best). And she loved life.
Our very favorite scripture comes from Proverbs 31:25. “She is clothed with strength and dignity, and she laughs without fear of the future.” And that was our Grace.
As we prepare to find a new normal in our lives, we will never forget the lessons that she taught us and the way she lived her life. And someday, we will see her again.
Until then, “See ya in the next world. Don’t be late.”