My Child Might Die: What to Say and Not to Say

My daughter might be dying. She has a fatal and progressive genetic condition. She is 1.5 years old. There is hope for her with experimental treatments helping to stall the progression, but still, it’s rough. Some of the most beautiful things I’ve seen in my life have happened since we’ve gotten the diagnosis. Acts of kindness and love that keep us standing. But also, we are deeply grieving while we are also living, hoping and fighting. And some people just don’t know what to say — sometimes I can’t blame them.

I’ve heard it said before and experienced it on both sides, it can be really awkward and uncomfortable to talk to someone going through trauma. There’s nothing you can say to make it better, but still I will find myself occasionally blurting out things I know are not deeply comforting, like, “it will be OK,” or “at least (insert silver lining).” I try not to say things like that myself anymore, but I still sometimes do. It’s hard, you want to try and make people feel better.

Here are my two cents of what not to say or how to react in a situation like ours when there’s not much to say.

What not to say or do:

1.  Unless you’re a close friend or family member, please don’t be overly emotional. This puts the other person who is feeling this more intensely into a position where they need to comfort you.

2. Similarly, please don’t say, “this is too sad for me” or “just enjoy her.” The first isolates us and the second is like saying, “there’s no hope, I think your daughter is toast.” Even if that’s not what is meant, it’s how it can come across.

3. At the same time, don’t act like it’s not a big deal, not ask questions or not talk about it. It’s on our minds all the time, and talking about it in a comfortable way is an easy way to reach out to show you care. By not talking about it and acting like everything is the same, it comes across like you can’t or don’t want to handle it, which makes us feel even more isolated and alone with it.

What to say or do:

1. Be sensitive and practical. If it wasn’t for our friends and family we would be puddles on the floor. Helping with meals, cleaning, organization, trip planning, company, cards, visits, groceries, documenting, doing errands, emotional support, going to medical appointments, researching — these all mean something beyond words. It gives us air to breathe and strength to fight forward one step at a time. Spend time with us, with Marian, laughing with us and following her journey. It’s not the magic words or grand gestures, it’s this: being there.

2. Say, “I love you. I am here. I will fight with you.” And that’s really, ultimately, what I think is the best.

The most beautiful words of love and support offered by our friends and family have all been versions of this: “I’m here with you all the way.” It gives so much comfort to hear. You can feel so alone and it’s not assumed that most people will be by your side. Grief and trauma can make some people react in strange ways, and the people you think will be there are not always there. It is exhausting. It is isolating. And it is a long road. “I’m here,” says exactly that, “I see you, and I am here with you in whatever way is needed, for however long. Passed the shock and awe, I won’t forget you. I will be there. I’m here.”

Follow this journey at Hope for Marian

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