This was the moment we've waited his whole life for: On morning of July 1st, Bennett swallowed his first dose of Trikafta, the first medication approved by the FDA for children ages 5-12 that addresses the underlying cause of Bennett's specific type of cystic fibrosis.   Each pill costs about $270 each.  Bennett literally swallows nearly $900 a day to keep himself healthy.  In total, Trikafta costs about $300,000 a year. Out of the 8 daily medications Bennett takes, this is the only one that is not prescribed to stop the symptoms of CF.  This one is prescribe ..read more

The worldwide pandemic changed the world.  Our world included.   The kids and I faired really well during a year of COVID. No one got sick and everyone was able to make it through a year of homeschooling while I worked from home (thanks to amazing neighborhood friends and a fantastic babysitter).  But our time staying safe from COVID gave me an opportunity to recognize some unmet needs in our family during those months of isolation. After careful consideration, in January, I began the process of moving the children and myself to Dallas, Texas - closer to Bennett's CF care ..read more

Joy!  That is what our family feels today!!    This morning, with one eye open and the other still shut, I woke up, rolled over and opened my smartphone.  I clicked a notification to find a link sent to me by another mother of a child with cystic fibrosis. My heart lept:  It's approved!!!!!!  A few minutes later, Bennett walked in my room. I was delighted to share with him the good news, "Hey buddy, your medicine has been approved!"  He grinned and gave me a high five!  It was the news we were waiting for. Trikafta, the first medication approv ..read more

Bennett turned 11 on September 30.  Since this was Bennett's pandemic birthday (seems like everybody had at least one of those!), we decided to hold a small birthday party outside. Bennett chose to have a Lego-themed birthday.  It's one of his very favorite things to play with. Party favors included lego-shaped gummies in lego-shaped plastic banks and little bags of lego-shaped hard candy. Opening presents Being very gentle when sister presents her present to him. Make a wish! If there is a picture to capture Bennett, this just might be it.  Bennett loves t ..read more

Texas is in the middle of a historic winter storm event right now.  And I'm in the middle of Texas. For many many Texans, tonight brings another day and night with no electricity and no heat.  On the heels of no heat or electricity, there is an emerging water crisis.  While the upcoming weather looks to return to our normal above freezing temperatures in the coming days, we are holding our collective breaths that our frozen pipes won't destroy our homes, businesses and schools.  This is day 7 of historic low temperatures.  We are weary.  Lest we forget we ..read more

For nine months, the world has ached and longed for a vaccine for COVID19.  It has been thrilling this last week to watch the distribution of a medicine that has the potential to change the world back to the way it's supposed to be.  Along with so many others, I look forward to the day when I, too, can have access to this drug. But, for me, the vaccine, as remarkable as it is, pales in comparison to the drug I'm waiting for.   The drug I'm waiting for is one I've waited for for over a decade.  It's a drug that has the potential to change my son's world forever and to ..read more

For the first time ever, the annual North American Cystic Fibrosis Conference was held virtually (due to the COVID19 pandemic) in October 2020.   Although one of the best parts of NACFC is getting to meet with clinicians, researchers and parents in the hallways between sessions (and sometimes adults with CF who come too), one of the hardest parts of NACFC is not being able to go to all of the great sessions going on simultaneously.   If there was a positive about an all virtual NACFC, it was that, since it was online, I had a chance to watch all of the great sessions I want ..read more

These pictures are about two months late but they are too sweet not to share.  The baby in our family, Avonlea, turned 7 mid-July.  We love birthday party themes so this year's theme was 101 Dalmatians.   Avonlea's birthday couldn't have come at a better time.  We were 5 months in to the pandemic and we all needed something to look forward to.  I was concerned about keeping our family safe from COVID so we decided to invite our neighbors and have a socially distanced birthday party in our front yard with a pinata. I feel pretty safe from COVID outdoors so it ma ..read more

Up until almost this very moment, I've been single-parenting alone for nearly 6 months without a break. Things changed for the first time this week and it's been a welcomed respite.  Parenting 3 children (including one with a chronic health condition) alone 24/7 for months on end in the middle of a world-wide pandemic has taken every bit of my focus.  We have had very little face-to-face contact with the outside world and the little contact we have had has been short lived, outdoors in the Texas heat. I've wanted to blog so many times.  I've had so much to say.  But sleep ..read more

This Mother's Day blog post was delayed because of...well, caring for my kids.  But, even though it's three days later, I've decided to post it anyway. I had a really lovely quarantined Mother's Day.  It was a mix of delight, intention and surprise.  It was a completely different one from last year. One year ago this week, I sat on the floor, alongside Brian, and shared with our children that their father and I had made the decision to end our marriage.  It was a complete surprise to the children.  Telling them was as painful as I imagined it would be. This entire ..read more