I am going to pray for your brave little man. I believe he will outgrow this terrifying monster to be a perfectly healthy kid. I do.
And when he does, I want you to be ready for number six, because I was not.
When your chronically ill child is given a clean bill of health, you may find that the hypervigilence, and the sleepless nights, and the constant waiting for the next incident so you aren’t taken by surprise…all of those things have become what comforts you. And when they are no longer necessary, you may find they were holding you together. So when the doctor gives you permission to breathe, and sleep, and live again…to look towards a future…you may fall a little bit apart. Mom may. Be ready for that. It happened to me, and even though it will be eleven years on the 13th since my son had his first 'episode' and almost seven since the last one, I still can’t understand how him getting better led to me losing my shit.
I got it back.
But I wish someone had told me to keep an eye out for that possibility.
I wish your family the very best.
And if you want to know more about Alex his story is here: