As Daphne’s parents we now regularly experience the awkward situation of sharing Daphne’s story with friends or neighbors or co-workers. It’s actually not awkward for us. For us the story is well rehearsed, and it’s something that although will always be painful, we’ve accepted to some degree. But it is awkward for the listener. They are now instantly put in the position of having to respond to the most devastating news a parent could share, that their child has a serious rare disease. Nobody knows what to say.
A digression (Rich): when I was in college, a very good, lifelong friend of mine experienced the sudden and unexpected loss of his father. I thought a lot about what I would say when I saw him. Everything I thought of seemed so woefully inadequate that when I finally did see him, I said nothing.
My new perspective is this, saying something is always better than not saying anything. The text, “I’m sorry to hear what you’re going through,” feels inadequate, almost trite, to the sender. But it’s not. It means a lot.
People often say the wrong thing. Parents often feel the need to respond with their own child’s medical story, even if it’s off base. Somehow the story of your child’s frenulum isn’t quite on par with the fact that my child can’t use her arms. But, you’re concerned and engaged, and I appreciate that.
Now from Desiree: I have not publicized this as much as I do other things on Facebook and Instagram. I have a lot of “friends” from various walks of my life and some close, some not, but some that are always good about giving me a like on a picture or a comment so I still feel close with them.
I made a post on Facebook a couple months ago asking for thoughts and prayers about Daphne when she was getting an MRI. That post received a lot of comments and likes.
When we found out more about her disease I decided not to make a post for all to see and then jump on board to follow at that point, but for the group that cared enough to comment or like my MRI post and then to go back to it to see what I wrote.
Where am I going with this?
I have a lot a friends that I consider close and that I try to make an extra effort to stay in touch with since I moved to the other side of the country that have not reached out to me.
That have not sent a text, called or pinged me on Facebook.
It hurts. A lot.
I had a post about Criticism but decided to take it down because I got angry. A little angrier than I do in posts about the Doctors but I still believe in what I wrote.
I used to judge people.
I used to think there was a simple fix to most things.
I served a friend and coworker a piece of “humble pie” as a friend so uniquely called it and that person is angry with me.
Two very important lessons that I believe pertain to everyone:
- you cannot change someone
- if you don’t like something, remove yourself because you cannot make someone else do anything
*this does not apply to learning how to clean, cook, be helpful, etc. (men I am talking to you here 😉
So, we’ll leave you with this:
You can never completely understand what someone else is going through. But if you are being kind, compassionate and loving, your words are never misplaced.