We are Ken and DeAnne Close, parents of Lesa Brackbill (husband Brennan) and grandparents of Tori.
When we found out that we were going to be grandparents we were overjoyed. Because of our own special experiences with our grandparents, finally becoming grandparents ourselves was something we had waited for and looked forward to. Our daughter, Lesa, went into labor while we were waiting for our flight from California to Pennsylvania but we arrived a few hours after Tori was born. Seeing her for the first time was incredible. She had a full head of black hair just like her mother. She was beautiful. We spent six weeks in Pennsylvania helping Lesa and Brennan adjust to life with a newborn and loved every minute we had with Tori. Ken even taught her about the different types of Hershey’s chocolate and told her she couldn’t date unless the boy asked for his permission. We cooked, cleaned, and helped in any way we could while Lesa recovered from a c-section and held Tori as much as we could.
As Lesa began to notice changes in Tori, we talked to her almost daily. Tori was inconsolable, and Lesa wasn’t getting answers despite her efforts. It was a helpless feeling, especially with the distance. The day after Lesa and Brennan found out that Tori had brain abnormalities, DeAnne got on a plane to Pennsylvania. Less than a week later, after the Leukodystrophy diagnosis, Ken flew out to be with the family while they waited for answers.
On Diagnosis Day, Brennan and Lesa came home devastated. We, also, were devastated to hear that our only grandchild was going to die. We felt hopeless because a parent always wants to fix problems for their children. Just like at Tori’s birth, we did whatever we could to help out around the house – cooking, cleaning, house projects, and handling visitors. We also accompanied Lesa to Pittsburgh by train to take Tori for her evaluation with Dr. Escolar. DeAnne stayed for about five weeks total. We spent as much time as we could with them in California and Pennsylvania.
Brennan and Lesa created a “Bucket List” for Tori and we were part of ten of those adventures (https://thebrackbills.com/about/toris-bucket-list/). One of the most memorable was when we rented an RV in Southern California to take Tori to Disneyland, and the Grand Canyon…
When we found out that they wouldn’t be able to fly to California in March 2016 because of Tori’s condition, we made the last-minute decision to fly to them, rent an RV, and drive around New England. While we were up there we saw some of our family and did some more bucket list adventures. We drove back to Pennsylvania on DeAnne’s birthday, and the next day Tori went to Heaven. We stayed until her Celebration of Life (about two weeks later) and then Ken stayed an additional two weeks to help Lesa with house projects and to ease her into being home by herself. We are so grateful that we were there for Tori, Lesa, and Brennan at Tori’s birth, Krabbe disease diagnosis, and death.
Family and friends gave as much emotional support as they could, but if you haven’t experienced it, it’s difficult to know what to say or do for someone going through it. Ken’s parents paid for the first plane ticket since it was last minute, and DeAnne’s cousin gave airline miles to get her out to PA. Other cousins sent monetary gifts with instructions to “do something fun” to keep our minds off of reality. Those little acts of kindness meant so much.
Coping with this journey was difficult so we stayed busy with work, tried to live life as normally as possible, and spent as much time as we could with Lesa, Brennan, and Tori. We continue to educate as many people as we can (including doctors) and encourage people to get test kits and even undergo carrier testing so that they are armed with knowledge.
Our advice to other grandparents would be to listen to your children and spend as much time making memories as you can. Ask your kids what they need from you and remember that they may not know. Jump in and serve in any way you can – even if it’s just cooking a meal or doing the dishes. Grieve in your own way and recognize that your children are grieving in their own ways.