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 […]

“Will evildoers never learn–those who devour my people as men eat bread and who do not call on the Lord? There they are, overwhelmed with dread, for God is present in the company of the righteous. You evildoers frustrate the plans of the poor, but the Lord is their refuge.” -Psalm 14:4-6 “We won’t begin […]

“The Lord is King for ever and ever; the nations will perish from his land. You hear, O Lord, the desire of the afflicted; you encourage them and you listen to their cry,”-Psalm 10:16-17 “The cumulative effect of days upon years that we do not really understand is a subtle erosion. We come to doubt […]

“Complain if you must, but don’t lash out. Keep your mouth shut, and let your heart do the talking.” Psalm 4:4 (The Message) “There is something missing in all of this, it suggests, there is something more…We listen and we are aware of – a sigh. And under the sigh is something dangerous, something that […]

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 […]

We don’t live too far from UCF and so we often drive through campus as a little detour when Reagan is sleeping and we need to kill time. Driving THE campus brings me back to when I was a college student. You learn a lot about yourself when you’re away from home, trying to find your […]

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 […]

It’s 11:00 p.m. I open the door to Reagan’s dark room and step on the wood floors, hoping they don’t creak too loud. Rob walks in behind me, IV pole in hand…four little paws tap behind Rob. Reagan’s room is dark. The ocean sound machine is on, and her lullaby playlist, that we’ve played for her since […]