“I am so sorry.”
“This must be so hard for you.”
“I don’t know how you do it.”
Let’s change the dialogue.
We know it is hard. We don’t want you to feel sorry for us. We have a beautiful (different than typical life), but still beautiful one. All we want is love and support.
It has been 10 months since Hailey was diagnosed and a year and a half of knowing my daughter was not typical. This is hard. Some days we make it look easy, but it isn’t.
Those missed milestones, seeing other children doing so many things…those things sit deep in your heart, in a place where you bury it, but it isn’t gone.
Sometimes we, parents, put a facade on for our children, for our friends, for the public. But there are days that we just want to bear it all. Tear off the mask; unleash the deep-seated sorrow that comes with being a caretaker to a medically complex child.
But when you are looking for comfort, sometimes you don’t find it in the places that you would expect.
Your friends and family try to say the right thing; it is all well-intended. Some days you roll with it, but other days, it burns your core and makes you want to scream. And we so appreciate the genuine support that so many offer, but it would be a misfortune, to let it go on in a way that made us uncomfortable.
How can we change the dialogue so that people know what to say?
Here are some other topics or questions that one can ask a parent/caretaker:
- How can we talk to other children about special needs
- What is our child interested in
- What are some of their milestones that we can celebrate together
- Engage with our child- if they are nonverbal, they still have receptive language!
- Avoid talking about our child as if they are not there. Receptive language!
Remember, we are all human. Let’s change the way we talk and love each other!