When People Say ‘I Don’t Know What to Say’ After My Daughter Died


I lost my youngest daughter, Blake, this past August. She was diagnosed with a neuromuscular genetic disease called spinal muscular atrophy. She had the most severe form of the disease, referred to as type 1. Her diagnosis was terminal. When she was diagnosed at nearly 6 months old, I knew my world was over. My child was going to die and I couldn’t save her. When she died five months later, my world did fall apart.

Shortly after her death and ever since, I’ve heard so many times over:

“I don’t/didn’t know what to say.”

I understand. I think everyone would agree no one wants to say the “wrong” thing to a grieving parent. You may not say the right thing. But to be honest, in my opinion, there is no “right” thing. Our baby died (they are always our babies, even when they grow up). Nothing changes that, nothing eases that. In addition, everyone is different. The way we grieve, even for our children, is not universal. Some things will bother someone that wouldn’t bother someone else.

My strongest piece of advice as a bereaved mother? Say something. You will be uncomfortable; there is no doubt about that. But if you care, truly care, try to push through that discomfort. There is also the fear of disturbing a grieving family, which creates anxiety. Fortunately, we have so many different forms of communication nowadays: in person, on the phone, a letter, an email, a text message, Facebook. You don’t have to show up to someone’s house to say something.

If you’ve decided to say something but feel like there is nothing to say, I believe there can be. A phrase I have never heard another loss parent I know become upset by is:

“I am so sorry.”

A few more you can say:

“I am thinking of you.”

“I love you and I’m here.” (Only say this if you really do and you are.)

“I don’t know what to say, but I want you to know that I care.” When all else fails, say that you don’t know what to say. That’s still saying something.

Be mindful of making it about your grief. I heard “I don’t know what I’d do if my child died” or “This is so awful, I can’t even handle it, I cry all the time!” a lot. Those types of things can be the opposite of helpful and isn’t tending to the bereaved parent.

If you want to ask the “how are you?” question, be prepared for a real answer. In my experience, too many people ask the question but might not really want to know. If you can’t handle the raw emotions of grieving parents, do not ask them a question like that.

Please, though, keep saying something. In some ways we need support more in the long-term than the short-term. We never forget about our children; we are always grieving them and in pain missing them. The kindest thing you can do for us is show that you care. Continue to think of us and our child. Tell us that you care.

It’s never too late to say something. If someone says, “I should’ve said something, and I’m so sorry I didn’t. I let my own discomfort get in the way. I’m here now and I care,” it might not take away the hurt or the anger, but they are recognizing it and that’s meaningful. It can be a way of trying to show they care.

I may not always remember what someone said to me, but I do remember that they said something.

Follow this journey on Still Finding Sunshine.


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