Over the years as I’ve been raising the kids I’ve heard people give multitudes of advice. I’m not talking about the mom-to-mom advice about diapers, co-sleeping, tummy aches or fevers, because as moms, don’t we all need that?

I’m talking about the people who’ve said I should treat my (sick) kids normal. Just like any other (well) kid.

I hate to tell you this and shatter your belief that if we just act normal, we will be normal, but really, it’s not possible. There is nothing normal about what my kids have medically endured in their short lives. So we can’t really just act normal.

We act a normal that is our own. We mix (what we think are) the normal happenings in life with the (what we know are) not-so-normal happenings in life and we hope we land somewhere in the middle at averagely untypical.

It’s not normal for a child to endure hundreds of therapy appointments at the cost of normal playtime with peers.

It’s not normal for a child to be held down by their parents for medical test after test (or parent inflicted shots) and for them to have to switch modes to think of the parent as a comforter.

It’s not normal for 9 year-old child to have PTSD or severe depression that causes suicidal tendencies, in lieu of playing outside for 7 months.

It’s not normal for a child to swallow up to 20 pills/liquid medications per day at meal times, where they barely want to put anything else in their mouth.

It’s not normal for a child to be so shut down because of their experiences that they can’t talk, can’t sleep, can’t function typically in a normal world.

It’s not normal for a child to talk about the time they almost died or that a surgery could lead to death nor is it normal for a child to hear a parent calmly talk about a procedure that sounds scary in the simplest terms.

It’s not normal for a child to have to endure time away from their life – their friends and family and fun for crying out loud – for treatments that keeps them alive.

It’s not normal for a child to endure their own suffering only to realize that their sibling faces the same fate.

So the advice “Just treat them as normal.” can’t apply to us. While we certainly interject normalcy when possible, their lives aren’t normal. And I know that some people when they say it to me mean it from a place of concern and caring, hoping to help. And that kind of advice I’ll always listen to with the appreciation that it comes from a loving place. But every so often there is someone who says it from a place of know-it-allness, and frankly, it gets old. I mean it’s not as if I haven’t thought of this myself. Or wished for it many times.

Normal is not as easy as it looks. And that’s all I have to say about that.