I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Friday, April 28, 2017

When The Fairy Godmother Came To The Gas Station


Two years ago today we were feeling very loaded down and heavy as we pulled into the gas station. We were getting ready to drive to the hospital for Orson's g-tube surgery. He had been fasting since the night before and while it was fun at first to "get the day off from eating breakfast," he was realizing it only meant he was hungry. Trying to convince a three year old that being hungry is necessary was proving difficult.



I was 7 months pregnant with my 4th child and I was trying to hold it together as much as Orson was. Daddy the gas pumper was doing his best to be cheery too. We were each existing moment to moment assuring each other things were GREAT when really all of us were on the edge of breaking down. Lot of emotions, guilt at feeling like failures at feeding our kid properly, guilt that he would have a piece of plastic installed to fix our failure and it would scar him for earth, etc. Then what may as well have been a golden carriage pulled up on the other side of our gas pump.

Out stepped Orson’s fairy godmother disguised as one of our neighbors and friend. She gathered up her sparkling flowing gown and before she could even start singing she knew just what Orson would need that day. With a wave of her wand she assured us she would make this day better.


A couple of hours later after the surgery was over and the breakdowns had all happened there it was. A stuffed to the brim brown paper sack that had been delivered to our house from Orson’s Fairy Godmother and then brought to the hospital by Orson’s Fairy Grandmother (BeBe). Inside was a note explaining that the next couple of days was going to be rough but when things got tough for Orson he could pull something out of the bag to help distract him and cheer him up. Of course there was plenty to share with the older brother and sister who would be watching and hoping for a piece of that prize in the sack as well. Heavenly Father knew that we needed Orson’s Fairy Godmother at the gas station that morning! He sent her to help us just when we needed her magic.


This memory whopped me in the head (perhaps reverberations of the magic wand waived there for us years before) this morning as I put my car in park in front of the same gas pump two years later. We’ve learned so much about Orson’s g-tube in these past two years! His litter sister even thinks she has one and tries to squirt syringes into her stomach every night when we hook Orson up. He was about 32 pounds when he started and if all goes as planned next week when we go in to weigh in on the scales that count at the hospital he should be about 44 pounds. I’m pretty sure that fireworks and a marching band will begin to play if that’s the case. He has gone from the 13th percentile on the CF growth chart to (since we last checked on February 13th clinic visit) the 47th percentile (almost out of the DANGER zone, AKA below 50th percentile). I am definitely grateful he has his g-tube and that he has the long term benefits of growing properly now to benefit the health of his lungs long term.  


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