Remembering Grandma...

How do you explain death to a child that is developmentally delayed? How do you tell your child that one of his best friends has gone to heaven?

My mother, Emmett’s Grandma, recently passed away. Her health had been declining over the past few years and we knew that it was coming, but it was definitely hard to say goodbye.

Although my mother loved all of her grandchildren very much, Emmett and Grandma always had a special bond. Initially, I think it just made sense for them to be together more because Emmett was not only the youngest, but he also needed to be held a lot and watched more closely than the other grandkids. She was always happy to help and Emmett has always been a cuddle bug, so that was an added bonus. Whenever we would get together as a family, my mom was happy to have Emmett sitting on her lap or letting him lead her wherever he wanted to go. She would also help by feeding him so that Seth and I could have a chance to eat, and she even provided respite care for him until she was no longer physically able to.

When we received Emmett’s official diagnosis in late 2014, my mom became one of his biggest advocates. She shared information about Xia-Gibbs Syndrome and my blog with just about anyone she met, whether she knew them or not. If she saw a parent with a child wearing a helmet or orthotics, that was often all it took for her to strike up a conversation.

They were definitely two peas in a pod and being together brought so much joy to both of them. I remember one time when we hadn’t seen my mom in a while, Emmett was so excited when she arrived that he was nearly in tears and he gave her the biggest, tightest hug.

In the past few years, she mostly relied on a wheelchair, but that never stopped Emmett from reaching for her hand, hoping she might get up and walk with him. He also discovered that if the wheels weren’t locked on her wheelchair, he could push her around— and he thought that was hilarious! We just had to be sure that he didn’t crash her into anything!

When her health seriously declined a few months ago and we knew that she was near the end, I tried to prepare Emmett as well as I could by telling him that she was very sick and that she would be going to heaven soon. We aren’t completely sure how much Emmett understands. Since he’s developmentally much like a 2- to 3-year-old, the concept of death is difficult to explain.

Emmett uses a communication device for his basic requests, and asking for his favorite people is something he does often. ‘Grandma’ has always been one of his top requests, which has made not seeing her a tough transition. She was such a big part of our lives before moving into the nursing home, and even in recent years, we made sure to visit her at least once a week.

When I learned that my mom’s passing was imminent, I reached out to Emmett’s ABA center to ask if they had any suggestions to help him cope with the loss. They offered to create a personalized social story for him, using photos and a simple narrative to explain our beliefs—like Grandma being in heaven—and to reassure him that it’s okay to feel sad. The story also lets him know that even though he can’t see her, he can ask to look at pictures and talk about her. To support this, they added buttons to his communication device so he can make those requests. While no book could ever replace his grandma, I do believe it’s helping him process the loss and understand it, at least on some level.

I know with time things will get a little easier, and we’ll settle into our new normal without Grandma, but we will never forget the amazing bond that she shared with Emmett and all of the sweet memories that we shared as a family.