Now what?

“Life is tough, my darling, but so are you.” -Stephanie Bennett Henry

Breathe.

That’s what I keep telling myself, but I’ve really been struggling since surgery. We went into the hospital hyperfocused on one goal: seizure freedom. We didn’t realize the other scary things that would come after: drains, stitches, equipment, ramping up in therapy, viruses, neuro visits, GI visits, more medicine than I care to see pumped into my son’s body…

Overall, it’s been brutal with lots of sleepless nights. He truly is my warrior.

I had lunch with a very wise friend lately and he asked me “Now what?”

The thing is, that’s such a good question. Now what? The last two years of our lives have been spent solely focused on navigating this “terrible thing” that happened to our child. Late nights spent online researching, reading doctor bios, talking to every mom in every forum I could find that’s walked this path before me, picking up the newest book about neuroplasticity…In fact, I haven’t read a book for fun since his diagnosis. I have learned so many lessons from my son during these years.

The truth is, I’m scared to think about what’s next because I feel like if for the slightest moment I begin to let myself feel happy, something bad might happen. I remember feeling this way after we got pregnant following IVF. Maybe you can relate? You’re super excited, but terrified. You’ve been through an amazingly traumatic, beautiful, gutwrenching experience, yet people think now everything is “OK” and you just go back to normal, but mostly you just feel bad because their outward excitement does not match how you feel inside. Not even close.

It’s complicated. You’re forever different. Forever changed.

Breathe.

Take a moment to slow down and just enjoy the fresh air, the sunlight on your face, and just be.

Anyone who’s been through infertility, IVF, or stayed in a wing at a children’s hospital for an extended period of time, it changed you. And sometimes, you HAVE to give yourself time to process it.

It’s difficult to get excited about the future when your heart knows disappointment and grief. So maybe you don’t know what’s next, and that’s OK. Just remember how tough you are. What you’ve been through, what you’ve overcome. And you’ll get there, one day at a time.☀️