A blog about us. our lives. our struggles. our victories.

Rob and Anne-marie

This is what community looks like. Our group of five families said lets have dinner together. Let’s pack our meals, grab a little take out, carry a blanket and set up on this lawn. Let’s talk, even if in broken conversation as we ask our kids to eat, sit still, chew or swallow. Let’s watch […]

Being a friend to a special-needs mom can be challenging at times. I know because I am a special-needs mom and I’ve discussed this very thing with my girlfriends, who also happen to be the best group of friends anyone could ever ask for. My friends were there when my daughter Reagan had a traumatic […]

It’s been almost TWO months since I wrote something.  To be perfectly honest, between an insanely busy real estate business and taking care of my two year old wonder, I have a list of BravoTV shows on the DVR that I’ve been using all my free time to get through. There’s my Thursday confession for […]

When we were in the hospital with Reagan, we had the most amazing nurse, I’m going to call her Kate. Kate had the most incredible demeanor. She was calm, always smiling and confident, she was the exact opposite of how we were feeling. After Reagan’s metabolic crisis, Kate helped us set up a conference meeting […]

We have some new visitors to the blog, FB and Instagram pages so I wanted to give a quick update and overview of why we’re doing these auctions and what GA-1 is and how Reagan has been affected. Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn […]

I don’t feel like writing…I just want to go get an iced coffee, a pair of sunglasses and pick up a few things at Publix. But today, the prompting to write something has been so strong in my head. Reagan is with Rob at therapy, I was about to walk out the door…I even kissed […]

I didn’t have a very good day the other day actually, the three weeks leading up to last Wednesday, Thursday and Friday were rough. Wednesday: formula catastrophe at almost midnight Thursday: notification our therapies were being denied by insurance at Reagan’s appointment (vomit) Friday: absolute denial from insurance for any more therapies for Reagan for the remainder […]

I have the best girlfriends in the entire world. They are always checking in on me, always asking to get together with our kids…always trying to make sure I know that Reagan is loved and included…always, always, always loving my family. And Reagan LOVES to see new people, especially ones that are her size that she can […]

I love watching movies. It’s a short escape from all your responsibilities where you can turn your mind off for around two hours and just sit, relax, and watch. No thinking required, all you have to do is keep your eyes and ears open and everything just happens in front of you. Now if you […]

The title of this blog is a complete oxymoron, but there’s good reason.  Let me explain… In my mind, I feel the need to control every situation for Reagan.  Who am I going to let be around her…who have THOSE people been around…and so on and so forth.  You would call that a tight grip, […]

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