It wasn’t ever a club I wanted to be in. My parish priest said after the birth of my second that she had no special needs because God did not think I was a strong enough mother. Those words still ring in my head. Honestly, with all of my pregnancy and labor complications, I have felt like I’ve narrowly avoided it. Every time that sweet babe was laid on my chest, I breathed a sigh of relief. We were ok.

Except with her.

I never could shake the feeling. Probably because she never met her kick counts. I’d lie there for twelve hours with not a single flutter. I’d move my giant tummy from right to left and would feel nothing. I’d be sure she was gone, only to see a very still baby with a heartbeat on the monitor at my next appointment.

Maybe it was because she stopped growing almost at all before 30 weeks. Her growth gaps grew larger as we got closer to delivery. They would threaten to induce, only to send me home a few hours later. I’d take a non-stress test sitting in a Labor and Delivery room while my husband paced at home waiting for the verdict. Eventually it came. Thirty-six weeks and it was time.

I probably had trouble shaking that feeling because she was admitted three times in the first year of her life. Because she was on concentrated formula for nearly twelve months. Because she was seriously failure to thrive for nine months.

But I thought we pulled out of all of that. Left behind in those dark days when I’d weep through feedings, beg her to grow, obsessively count every ounce of milk she consumed. I thought it was behind us, the multiple weekly weight checks. The times I laid her in a PICU bed and grabbed my rosary. The night I had to walk out on her tiny screaming self because my husband was deployed and there was no one to watch the other children.

I tried to think we were past it all. But part of me never stopped suspecting otherwise.

I’d been seeing it for awhile. It started to subtly. I tried to excuse it as stress from our military move. But it didn’t go away. And then more started surfacing. I finally took her in. But they ignored me. They ruled out one serious thing, and then didn’t let us follow up. They blew me off.

Some time passed and I noticed more and more. My heart started worrying. In December I took her in again. And it went from “I don’t know maybe she’s got something going on…” to six specialists and a slew of tests and starting therapies within a month. Even I hadn’t suspected anything to this degree.

I walked into the therapy waiting room and I felt like I was going to choke. I couldn’t breathe. The room started to spin. I sat down. Reality can be overwhelming and here it was staring me in the face. Children in wheelchairs and walkers, verbal and nonverbal. The volume was deafening. I suddenly felt like I’d been picked up and dropped into the deepest part of the ocean and expected to just swim. I looked down at her. She was equally as terrified. And so we held onto each other.

We have no answers. We continue to wait on testing. So many appointments, so many therapy updates. Scary words. Terrifying possibilities. And here I am, still watching things surface. Waiting is so terribly hard.

“I think God put us in each other’s lives at the perfect time.”

Her therapists are amazing. We pray, we text, we work together. This girl of mine is a fighter. She’s sassy and sweet, spunky and loving. She’s a gift. And I’ve learned to fight and advocate, something that can be hard for me. But I’m determined to give her exactly what she needs. Because she deserves it.

And so I keep waiting. Watching. Trying not to drown. Trying to keep up. I know that the Lord is with me. As I wait through the silence, pray through the fear, I sit with Him. I kneel next to him in the garden and soak in His presence. I focus on today, try to stay rooted in the present moment. He sustains us.

Keep us in your prayers?

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