That’s Perfect

My nine year old, Ammy, saw me last week taking my injection out the fridge. She even expressed surprise that I was doing it myself. All along, she thought I was going to a doctor to inject me.

I hadn’t even meant for it to be a big production. But I’d had an appointment earlier on so didn’t take it out to warm it up at my usual time. Yes, my older children see it in the fridge when they take stuff out, but it’s not in their faces. (I hope.) I doubt they look inside and think, “ Oh yes, Mom has an incurable disabling disease, this should hopefully slow it down.”

So I was startled and amused when yesterday, Ammy asked, “Mom, is your ankysauraus spondylitis gone now?” I giggled inside at the name, and told her seriously, “No…I will always have it. Why do you ask?” (How could she forget that I’m treating it weekly? Did she think last week’s injection was the last treatment?)

She replied with, “You don’t act sick. You act normal. So I thought maybe it’s gone now.”

The sweetest words this mom could ever hear! There are so many things AS stops me from doing. So many minutes I cannot stand or sit with my children. But they don’t see that! She just sees a mom who is teaching, doing chores, hanging laundry, taking laundry out (I don’t take a huge basketful in one go. So I make multiple trips.) She doesn’t see the CAN’Ts. She sees a normal mom. Sometimes these invisible diseases are better. I don’t want her worrying. When the pain hits too hard, I give them something to do and I go lie down. I try not to burden them with knowledge that will worry.

And that is why I haven’t told any of the children the latest lung diagnosis. Interstitial lung disease isn’t good. To have fibrosis too is worse. The lungs are scarred and struggling. And the only way is down. I haven’t told them a thing.

I know of some angels who put university on the back burner when they hear their parents was not great. Truth is, an infection can kill me before I even get too bad. But I could also live 10 years on a slow decline. So why worry them? Why clip their wings if they want to fly far? (My daughter wants to go work overseas after she’s done her nursing degree.)

And so, I rejoice that to my angel who is a worrier by nature, I act normal. I pray I don’t need oxygen for many years to come. Then I will look normal. Invisible is a blessing when you don’t want to cause little ones to worry and fear.

And a smile, daily smiles, go a long way in reassuring little ones that life is normal.😊