Reagan is Going to be the Good Story

The other day, someone found my blog whose child also has a metabolic disorder.  She linked to her blog and I thought…hmmm, do I want to read what their child has? I skimmed the blog titles and read a few, looked at a few pictures, all seemed normal, even though the child had a liver transplant. I’m sure life before and after a liver transplant for a child are not normal.

Then, I noticed she had highlighted another metabolic disorder; it was Reagan’s disorder.  As I contemplated whether I should read it, I could feel my heart start racing and my body temperature to rise.  I clicked…I read, and then there was a video about someone’s story.


Ok, Anne-Marie. Do you click through to this now? We’ve already committed to doing some clicking on this blog, do you want to know about this kids story too?

Video is five minutes long…played to a melancholy song (sigh…sigh…sigh).

What if I skip through and fast forward, maybe I’ll get an idea if it’s positive or not.

I skip to something that says “Our baby made it to five months…”

What happened at five months?!??! Reagan is five and a half months.

I skip again…it talks about the baby’s low muscle tone and difficulty lifting his head around the five-month mark.

Ok, well, Reagan has great tone and she lifts her head…there I go comparing again.  It’s second nature to me; I’m competitive, in all aspects of life.  When I go into my office, I count how many sales I have on the board vs. other top agents in my office…I want the most, I want to be sales leader, I want to be the number one agent in my office, again.


This child is not Reagan I try to remind myself.

Balancing Baby
Balancing Baby

I skip ahead and see he must have obviously gotten sick and was in the hospital, the video reads something to the effect of even an ear infection and a simple illness can cause brain damage.

AH! Shut. It. OFF!!

I run into the bathroom as Rob’s getting ready for bed and tell him I’m having a nervous breakdown. Through tears streaming down my face I tell him in fragmented sentences what just happened.

Rob says: “Look at me. Anne-Marie, look at me. Yes, this disorder is very serious, and we can lull ourselves into believing everything is OK and forget that she has this very serious disorder because Reagan is doing great.”

I nod, “Mmhmmm…”

“This child, is not Reagan,” he continues. “The Dr.’s keep saying Reagan has great tone, and I had no idea why they kept saying that but I gathered it was important. And they have told us that most kids with GA-1 don’t eat as much as Reagan. And her levels have been fine. If she gets sick, we have a letter to take to the hospital, we have a “sick day” formula recipe; we know what to do. She is going to get sick one day…”

I pray that she never does get sick, especially in the first two years…I pray that she doesn’t have any setbacks, I don’t want to go to the hospital…that video showed their boy with things hooked up to his entire body. And while I did notice he was sitting up on his own and looked completely normal in the hospital…I can’t bring myself to thinking about having to go through that with Reagan, and I pray she’s just healed.

As I was talking with God this morning I prayed, “can you please heal her…it would be so much easier,” true cry of my heart.

Smile Big!
Smile Big!

Reagan is doing so great…but I keep fearing the floor is going to be dropped out beneath us, and I keep praying against that. I know that’s Satan trying to make me doubt God.

Rob and I sat and talked on our bathroom floor.  He reminded me that five months ago, we cried on our kitchen floor, and that we’ve come a long way from five months ago and our last tearful floor discussion.  He said, “we can’t worry about what tomorrow holds because today has enough worry in it.”  He’s right.

And then the million dollar question from Rob, “why are you looking at things like this at ten o’clock at night?”

I told him, I just was hoping it was a good story, and I still don’t know if it is because I couldn’t watch it, and every time I skipped ahead in the video, it made me want to skip further.

“Reagan is going to be the good story, Anne-Marie. That’s why we have this blog.”

Any of you that read this, can you pray that please? Make Reagan a bright light in the GA-1 family…make her story known, let it be told and let it be known that God made it so.

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