Dear Judy,
I am 16, and my mother said I should write you. I had a little sister until a month ago when she died. She had Down Syndrome, and had a very weak heart.
She was 4 years old when she died. She got a very bad virus, and that was it. It came as a horrible surprise, because I hadn’t expected her to die. I don’t think anyone did, but she did die, and it’s like a nightmare.
In my high school there are lots of kids who come up to me, even now, and say the most terrible things. Like, “Oh in a way what happened to her is a blessing in disguise.” Or, “At least she was put out of her misery.” My little sister was never miserable. I miss her a lot. I’m the one that’s miserable.
What can I say to these kids?
Julie
Dear Julie,
I’m so sorry your little sister died. Of course you miss her. You will always miss her, but now is the toughest time for you, which is why you are miserable. The pain is completely new to you and very sharp. Please understand that after a while — maybe a very long while — some of that sharpness will recede.
As for your high school classmates: almost no one knows instinctively how to respond to a death. That’s a skill that must be learned. And high school students, with all their other emotional issues, tend to be the most awkward of all (although I’ve met plenty of adults who sound at least as foolish and offensive when trying to offer what they consider sympathy).
Also: a lot of people don’t understand the first thing about Down Syndrome. They think of it, as you’ve seen first-hand, as some disastrous affliction, when it’s really simply an impairment, often with health consequences. What I’m trying to say is: just because your friends are making the most hurtful remarks doesn’t mean that they’re trying to cause you pain.
What do you say in reply? The truth. The next time someone tells you that the death of your little sister is “a blessing in disguise,” all you have to say is: “Actually, my family and I are devastated.”
That’s accurate. And it will shut them up.
Thank you for writing,
Judy
Thanks again for your very good advice, Judy. Well meaning people often think that in comforting a grieving person, they should try to make them feel better, or point out the bright side. I’m sure it’s even more tempting for people to do this when they have doubts about a person’s quality of life because of misunderstandings about Down’s or other situations.
What people really need is for others to acknowledge their grief, not minimize it.
Judy, your suggested response is spot on. I hope Julie will use it.