What to Say When…


A good friend asked me to think back to the first days after Emmy’s diagnosis and write about what was helpful when others reached out.  As a friend, it can be difficult to be on the outside looking in as this new normal unfolds for someone else. For me it’s hard to give a black and white, one size fits all answer of what to do or say in these situations but I’ve tried to remember the things that helped us in the very beginning when things seemed so uncertain and confusing, scattered and scary.

The first thing I remember was needing some space. But not too much.

At first I just simply could not talk about Emmy having Williams Syndrome. When the words started leaving my mouth, they were closely followed by big soaking tears and choked words and honestly, I didn’t really have much more information than someone could find on the internet. I didn’t have answers, only a new name to all the doubts and questions I’d had over her first 8 months of life. What I did know is that she surely would not be like my other children and her future was, well, just too much to think about let alone talk about. But that didn’t mean I didn’t want my friends “around” in other ways. Simple texts from them with no expectation of a response from me were a reminder that people cared.  A simple “I’m thinking of you today and saying a prayer for you now” took some of the sting away and reminded me that life was still going on outside my upturned world. A few friends wrote to say they had a meal for us and some asked if they could take the other kids for an afternoon while Emmy had an appointment.  Tangible help, simple words, consistent touch points, and a lot of grace-these things were very meaningful, even if I couldn’t express it at the time.

Then I needed some cheerleaders.

I didn’t feel better when people would tell me about someone else’s high functioning child with “Down Syndrome, Autism, or (fill in the blank) Genetic Syndrome”. Even as her parent, I knew there were no promises just yet for Emmy.  We still had yet to see many specialists and she was still so young that the days to come were realistically, unclear. What did help were words of encouragement to me as her mom.  “I know you can do this, Katy.  It’s really hard, I know.  But I believe in you and you’re a great mom”.  Those were the words that helped me rally some strength.

And after more time passed, these things helped too.

When people took a little time to read about her diagnosis on their own, it showed such thoughtfulness and concern.  I appreciated when someone would say something like “I saw that kids with Williams Syndrome are usually very relational” or something of the like.  It meant so much that they took the time to take a glimpse into our new world.  After a few months, and along those lines, I welcomed questions about her-even if they seemed “dumb” to the person asking.  If you genuinely were curious about Emmy and about her condition-I was so grateful that you wanted to know her more.  Actually at that point, I had a lot of newfound knowledge too…and I’m a talker, so I welcomed the questions.  Looking back, I think the only thing that hurt was silence.  I would have rather someone brought something up than be afraid of offending me and saying nothing.

Most of all, I loved when you loved on Emmy.

There were no guarantees made to us in the beginning.  I longed for them, but there were none.  Everything was a “probably” or a “might” or a “hopefully”.  I hated this at first but what it pulled out of me was a decision-a choice-to love Emmy for exactly who she was right then and there.  I loved when our friends and family asked, “Can I just hold her?” I loved that they simply wanted to be near her and just like I don’t want to be loved for what I do, but rather for who I am, I wanted that for my Emmy girl too. No expectations based on what the world would wish her to be, no crossed fingers that she would one day “contribute” to society, just simple acceptance of who God made her and a desire to get to know her.

In conclusion, I wasn’t consciously looking for anything in particular from people, but when someone reached out in the best way they knew how-I was humbled and thankful for the community, the curiosity, the effort, and the love. Thanks for reading.:)

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