It’s been raining here for days. I feel like I haven’t seen the sun in more than a month and that just adds to the exhaustion that is already weighing me down. It’s not the kind of exhaustion that you can cure with a nap or a good night’s sleep. Believe me, I have tried. Our full time nurse is back from her vacation and I have gotten at least 8 solid hours of sleep the past two nights. No, this is the incapacitating, unadulterated, unforgiving exhaustion that comes from almost 3 years of almost constant grief, anxiety and stress that at the very worst is raging and debilitating and at it’s best lurks just below the surface nagging at you like a tickle in the back of your throat, threatening to steal the small slice of happiness and peace you happened to find in between meds and trach changes and therapies.

It’s finding out a year after a traumatic cranial surgery that almost claimed your daughter’s life, that you have to do it again because the defect recurred.

It’s praying hard for someone else’s child with the same defect as your daughter and hearing that they didn’t make it, that they couldn’t fight any more and feeling grief and guilt and relief that it wasn’t you and guilt all over again, all at the same time.

It’s a years worth of nights of broken sleep or not enough sleep, or no sleep at all because your night nurse was sick or you just didn’t have coverage and there were meds to give and alarms to silence and feedings to refill and kids to comfort.

It’s bearing the burden of isolation and sacrifice in order to keep germs away because the common cold is a terrifying and deadly enemy.

It’s knowing that you have at least another 10 years of this, if the doctors are right.

But even in the exhaustion there is hope.

There is learning how to be strong and brave and to persist against the odds.

There is the supernatural knowing that prayer is not about the outcome but about learning to live a life dependent on a God who is faithful and good no matter what we face.

There is the gratefulness that comes with those sleepless nights because it means your child came home from the hospital.

There is the joy of dancing and singing with a child who doctors said would never walk or talk. And the craziness of chasing after two toddlers who are running in opposite directions.

There is the satisfaction of getting to the end of a cold and flu season and not being admitted to the hospital for illness despite the ICU doctors being sure they would see you.

And there is the faith that even though the road ahead of us is long, it has been paved ahead of time by the creator of the Universe and it won’t last forever. But until then we will “run with perseverance the race marked out for us, fixing our eyes on Jesus” because it is in our exhaustion that we find His strength.