Feeling powerless.. @3:00 a.m.

I'll start by saying I know that WE were chosen to be Grace's parents; it has made us stronger, and we've learned a lot from her. When she was little, she was in the hospital frequently for infections around her g-tube site; we nearly lost her more times than I can count or remember. Those nights in a Children's hospital, praying around her crib, and we both fought with God silently. We lost Grace's twin at 4 days old, something I have pushed far away, and now I was again asking that same God to watch over my earth angel.

It took a while for me to get back to my church, my God, but I believed in him and believed he would and did save and watch over Grace.

It's 14 years later, and we are still dealing with belly issues as we did when she was younger. Not so much her g-tube but her constipation. We see the best GI doctor in Boston, most of the meds she takes are for her belly issues, and they're not working. I know, after 14 years, that most kids with CP have constipation, belly issues... something doesn't work. But we've had tests, under anesthesia, that 'everything is working properly.' But it's not...and again, 14 years later, I feel powerless.

Powerless - that feeling that I want to just stop her pain and put it onto myself... I can take it, I'm strong, and I'm her MOM.. I want GOD to give me her pain.

I'm in the office today, it's 3:19 a.m., and I've been up with her since 1:00 a.m. First, she was just moaning and making noise in her room, and I thought to myself if I'm awake, I might as well check on her because we will all stay awake. I check, and she's just wet, no poop, but I know her belly hurts. I gave her some Tylenol to help soothe her and brought her to our bed. She plays a little game of wanting secrets from me (about going to the doctor, she signs 'nurse'); we talk a lot; I try soothing her. An hour later, she's still awake and rubbing her belly. At this moment, yes, we can try to give her an enema; it's something I personally continue to struggle with for her. She's older, she's tiny, but an enema is so intrusive, and honestly, if her buildup is higher up in her intestines, it wouldn't work anyway, so why be intrusive? We decide against it.

It's 3:32 a.m., and I'm in my office with my AirPods in. I can still hear her. I'll go in there & offer a hug. I'm up for the day. If I go back to sleep now I'll just be very tired later and I'm not good to anyone that way.

Hopefully, it'll get quiet, and I'll know they're both asleep. My husband is holding her and trying to get some rest himself (he needs more sleep than I do), but it's not yet. He feels powerless, too. We need divine intervention here.

Hey, God, it's me, Pattie - are you listening?