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What (Not) To Say

My daughter is dying. Maybe. She has a fatal and progressive genetic condition. She is one and a half 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's really awkward and uncomfortable sometimes 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 that 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 just not much to say.

What Not to Say:

(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’s 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:

(1) Be sensitive and practical. If not 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 means the air to breathe and fight forward one step at a time. Spending 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) And that’s really, ultimately, what I think is the best. I love you. I am here. I will fight with you.

I read that in Gaelic the traditional offering when someone is grieving, and absorbing this does feel like a form of grief, translates to, "I'm here." This, to me, is perfect. 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," gives so much comfort to hear. You feel so alone. 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 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.

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