If I could send myself a letter from me today to me 1 year ago…
Rough day, huh?
But you know what? It’s going to be OK. It’s going to be scary, and it’s going to get scarier, and it’s going to be tough – tougher than you can actually imagine right now, if you can believe that. It’s going to be a different OK than you are capable of imagining today. But it is going to be OK. But you know that. You’ve known that all along. God’s got this one – the hard part is letting Him.
You’re going to make good decisions. You’re not going to screw him up. Your instincts might not always be right, but they’ll be right often enough.
And here’s some advice:
– Never leave the house without knitting and a phone charger. (but by this time last year, you’d already learned that lesson, hadn’t you?)
– Don’t believe the good news. Most of it doesn’t work out and it just hurts more when you’ve let yourself believe it.
– The nurses are OK. Stay on your toes, but they’re ok.
– Keep trying on the nursing, but don’t beat yourself up about it. He’ll eventually stop eating by mouth entirely, and you’ll end up surprisingly happy about this, so don’t sweat it.
– Request Dr. Shylansky for surgeries whenever possible. Just trust me on this one.
– Ask for and accept the help others want to give.
This blog post inspired by this video on YouTube, which is a collection of advice that parents of children with disabilities would have given themselves on the day of their child’s diagnosis.