When you don’t know what to say…

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:

  1. you cannot change someone
  2. 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.

8 thoughts on “When you don’t know what to say…”

  1. I love following your blog. It is the first thing I do EVERY morning when I log on to see how you all are doing. I think you are amazing and your sweet girls are so lucky to have you have their backs! Hang in there.


    1. Thanks Molly. Now if we could get a little better at posting more frequently. Last night was our first collaborated post and I think Rich got the fever a little. It is a nice outlet and great way to capture the memories of our lives.


  2. As I’ve told you many times before, my heart goes out to all of you. I so very much love to read your posts and see your pictures…they make me smile and help transport me across the many miles that separate us. When you have an especially sad time, take heart in knowing you are in the hearts and prayers of many. Love you guys😍


  3. I follow your blog everyday. You and Rich are very lucky to have two beautiful and sweet girls. We love seeing pictures of them. Remember our thoughts and prayers are always with you all. Know that if you ever need anything we are here for you.


  4. Desiree , I love reading your blog , and I look everyday to see if you have posted anything.Though I can’t say ” I know how you feel – I understand your pain ” ,I do as a parent , have an understanding of what you are going threw.As a parent and a friend ( I hope ) we hate seeing our children suffer for what ever reason , and helpless and frustrated when we can’t solve the issue. Think of you everyday and admire your & Rich, unconditional love and courage.


    1. A friend for sure, more like family. You have always treated my kids as if they were your own and that love is undeniable. Always appreciate your thoughts and prayers.


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