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

Rob and Anne-marie

“Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice […]

There’s things you just don’t expect when you think of your life plan. Having a child with special needs is one of them. When Reagan had her metabolic crisis and we were in the hospital for two weeks, some Disney characters came around to take photos with the kids in the hospital. The photo we […]

I recently watched this TED talk by one of the leading Dr.’s in GA-1. Sometimes I forget how serious Reagan’s GA-1 is. I forget because I am truly, truly trying to not live in fear. I am doing everything I can all the time to trust God. When a fearful thought comes into my head, I […]

Anytime I have to tell Reagan’s story about her genetic disorder and then subsequent crisis to a new person, they inevitably ask, “but she’s better now, right? Umm…well…in ways she is, yes. But I can’t answer that question with an unequivocal yes, she’s all better. This path is super hard, and I refuse to let […]

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 […]

I absolutely hate it when Reagan gets sick or has a fever. She battled a low grade fever from Friday through the weekend with no other symptoms. One day she sneezed three times (I’d hardly call that a symptom) and one day her eyes were watery for about five minutes (what the heck is that?!). Due […]

After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very wrong. When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that […]

I had to make a video to fully share how Rob and I are reflecting on 2014. We hear allllll the time from people at how amazed they are with regard to Reagan’s progress. We are amazed too. I think it’s really important to remember where she was though, what she lost and how much […]

Is what I was thinking as I took a walk with Reagan in our neighborhood and met a new neighbor. Other than the fact that she seemed around my same age and had a daughter just two months younger than Reagan, I thought, “well…that’s where the similarities end.” Her daughter had blonde curly hair like […]

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP! Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube […]

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