Affirmation not sympathy

Since becoming a mom of kids with special needs the word sympathy has felt different to me.

Not because I think people who have sympathy have wrong intentions... I often think the heart is in the right place... but sympathy has a lot of limitations.

Sympathy is often about the person feeling it and less about the person they are feeling it for. It can create action sometimes but often limited depth to action. Sympathy also often means feeling sorry for the person and looking down on them instead of asking how you can join with them... its where a lot of charity happens without relationship. Sympathy isn't all bad, there are situations where sympathy is needed, but I think we often get stuck at the shallow of sympathy and miss empathy.

Something we decided early on with the girls is that we wanted to be cautious with our words about the girls medical needs and cautious about how we talk to them about their medical needs.

It is very rare that you will hear me say to the girls that I am sorry about something medical related and there is purpose behind that.

Some medical tests suck. Lydia is going to wake up from surgery tomorrow and likely not be happy. There is nothing fun about an EMG or GI motility testing, both of which Jilli has had.

However... sorry brings pity...

Instead our goal is affirmation and building up.

We acknowledge that something is hard or painful. We will say "I know, this test is painful and we understand that it is not easy" acknowledging something tells them we see what they are going through

but then we work to build them up by "however I also see how brave you are being in the midst of it and I am proud of you that even in the midst of this hard thing you are doing your best."

We will also remind them that we are there with them to love them and support them in the midst of the hard.

We say this to our kids even if they are crying, because at that moment, crying is their best, that is what they need to do and that is ok.

Words have so much power. We often try to play down their power but what we say is so important and I want to strive to use my words to build my kids up.

But I see when I tell my kids that I am sorry when they are trying their best at something hard medically that it sends them into a spiral of feeling worse about whatever is going on. Then I see them cry more and have more anxiety which is not good for their health. You can make someone think they don't feel well just by asking them enough times if they are sick.

Acknowledging that something is hard and confirming that you see that they are working hard at something and giving them words of encouragement to keep working hard builds them up. It helps them to see that they can do something. It helps them to believe in themselves. It stops pity and has so much depth then pity... pity helps your emotions like a candy bar, it might feel good for a moment but it isn't going to last and it isn't going to help you through hard things.

I don't ever want my kids to think they are less then because of their needs... and that includes that I don't want them to pity themselves. Pity is a very dangerous spiral that can get very yucky fast and have really bad impacts on health. I want my girls to be able to say that something was hard, but they made it. That doesn't mean it is going to be easy or always pretty but it helps when the next hard thing comes along.
 

We have had many child life therapists compliment us on how we talk to the kids and build them up, and I hope for my kids sake that it helps them in the long run. They both have gone through a lot of hard things in their lives but they still think the hospital is a fun place despite the hard and I hope our words has played into that.

This isn't saying that you shouldn't be kind or compassionate to people with disabilities, you should be kind and compassionate to everyone, but its good to think about emotions sometimes and if you are adding to pity or if you are joining with someone in the midst of their hard and helping to stand beside them and love them.





An update on tomorrow... Lydia will just be having the GI and heart testing done in the OR tomorrow. Logistics didn't work out for the muscle biopsy to happen tomorrow so we are meeting with the biopsy surgeon on Friday and she is having that surgery on the 27th. While we try to have our kids go into the OR as little as possible this does work out for Lydia's birthday being next week and having her birthday party at the park, hopefully this means she will be able to play more at her party!