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 […]

“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 […]

“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13 the very next verse “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you […]

“In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3 “But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. […]

“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 […]

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 […]