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Alyssa's Blog
Monday, September 28 2015
Gold Star

Jax and I were at lunch today and he was just looking out the window, watching the cars and the people outside, when he cocked his head to one side (because that is how he sees best), pointed at Hardee's and said, "gold star."

I could not BELIEVE he could see that far! I heard what he said and had to do a double-take to make sure he was pointing at what I thought he was pointing at.

It made me so happy and thankful that I got choked up right there in the restaurant.

We've come so far in 2.5 years. I wouldn't have dreamed he'd be doing this well the day that we learned about his little eyes.

I get messages quite often from parents who are just starting out on a similar journey with their kids, that we have been on with our Jax. I choose to share these little moments to give them hope for their babies' future.

Because in the beginning of this scary journey with PA, all we parents really have to hold onto is the hope that everything will be okay.

That is why I am going to start posting on this page again. I have been absolutely terrible at keeping it up, but as I look through my inbox, I see all of the messages from people thanking me for sharing our story, just because its so comforting knowing you aren't alone in your battle.

Peter's Anomaly is hard, like really hard, and so unpredictable for the families with kids who have it. For example, Jax has an exam under anesthesia on Oct. 15th and we won't find out until the middle of the exam if he will be having surgery for glaucoma at that time.

We are part of a small, private, Facebook group with other parents of kids with Peter's where we share our experiences, good and bad, and offer each other support on this journey with our kids. I honestly don't know who I would be able to talk to if we hadn't met these awesome families through Facebook.

SOOOO.....

If anyone out there has a child with Peter's Anomaly and needs a support group or just needs a place to feel like someone actually understands what you are going through, send me a private message and I can tell you how to join the group.

Glad to be back!

Posted by: Alyssa Davin AT 07:15 am   |  Permalink   |  Email

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