You shouldn’t have to see my child suffer or be using their medical equipment to believe or accept as fact that our lives really are as hard as we say, and a lot of times harder because we temper what we tell others.
Medically complex families usually don’t even share a third of what really happens in our lives because it isn’t everyone’s business and even if we did you:
A) Wouldn’t believe it was as bad as we said unless you saw it yourself
B) Couldn’t “handle” the details so you wouldn’t read it anyway
C) Would be so shocked and “not know what to say” so you’d try to give us the “silver lining,” or
D) Would try to do some other form of correction, shaming, dismissal or convincing of yourself that we are really just inflating the truth.
In the adult disability community it is considered highly disrespectful for a person to approach someone with a visible disability and question them about what happened to make them the way they are or expect their medical history to fulfill a curiosity. Just like it is disrespectful for someone to come up to you and ask what happened to you to make you the way you are or look the way you do. That’s something we have trouble saying even in private to our therapist so why would it be okay for a total stranger to come up and expect the very personal medical information of another?
Your curiosity does not make you privileged to any information you wish. If you think it does check your ego and sense of entitlement and reevaluate from there.
Some things just need to be and you take them as such without discrimination. Which is what we should teach and impress upon our children.
Not all things have a reason. Some things just happen.
Things will not always get better. In fact some things will get worse and some things just suck.
There is not always a silver lining. Some things are just terrible.
It is not your job or place to make us “feel better,” to “cheer us up,” to help us “move on,” or to help us “accept” it. Our journey is our own, and each is at its own time and pace. God himself does not take away grief or pain, why would you think so highly of yourself that you are more capable.
When parents of children with medical complexities find a moment where trust can be shared and the truth can be bared to speak aloud they are placing themselves in a deeply vulnerable state. To be regarded in any way other than held space for, believed and accepted is deplorable causing profound pain.
If you are questioning what I said above and are “Christian” remember, there is an example of someone being ill WITH NO REASON AT ALL in the bible. Could God still make something out of it? Yep… but, He also has the choice and vision to not, for whatever reason. Sometimes, probably A LOT of times, things just are because we live in a broken world.
Soap box done. For now.
