Two Years

Today marks two years since Ben died.


I always pause when I think of how to describe Ben. He was kind. He was a good friend and funny and had a great laugh. I can’t condense all his qualities into a single sentence or paragraph or even pages and pages. He was my brother-in-law and two years ago, he died.

Ben was born with Cystic Fibrosis, a genetic disease mainly effecting the lungs. In 2011, he was the recipient of a double lung transplant. We watched as instantly his life changed for the better. It was awe-inspiring. (I’m still amazed at the power of modern medicine!) But after what was probably one of the best years of his life, his health started to decline. I heard him whisper it in September, “chronic rejection.” Ben and his body held on as long as they could. In February, he slipped away.

I’ve said a lot about Ben over the years. I’ve talked about transplants and rejection and Great Strides. I wonder if after him being gone for two years there is more to say.

new lungs


Yes, there is more to say. I think there will always be more to say. I don’t have any new magical perspective. I haven’t reached some peaceful emotional place. Like everyone else, I still miss him. It still feels unreal at times. It will forever feel unfair.

I’m sad. Sad that Ben was cheated out of more time. Sad that those of us that who loved him have to go on without him.

What is new is my respect for him. I mean, I always respected Ben because he was simply such a good person. But as I think back on all he experienced, I’m struck by how incredibly brave he was. He bravely faced his disease. He bravely and patiently waited for new lungs. He bravely went into the transplant surgery. He was brave every step of the way, right through to the end.

There’s so much that I don’t know about what he was thinking and feeling. So much of it he kept to himself. Maybe not to burden everyone around him. Maybe to make it easier for us to be brave. Nothing I’ve faced has been one iota as scary has what he experienced. Realizing that, I appreciate his bravery that much more.

There is no big takeaway or aha or sweet quote to tie up this post in a neat bow. I just want to say how much Ben was loved, how much he is missed, and how I’m only now realizing just how incredible he was.

Great Strides 2014

Great Strides 2014 was last week.


Great Strides is the annual fundraising walk for the Cystic Fibrosis Foundation. I walk to honor my late brother-in-law, Ben, who lived his entire life with CF and died in February of 2013 as a result of the disease.

I first participated in 2011 when the walk happened to fall on the day after Ben’s double lung transplant! How’s that for serendipitous timing? Our team was teeny tiny that day, but I can almost guarantee you that we were the happiest people on the course.

Ben looking like his usual self only one week after his double lung transplant!

Ben looking like his usual self only one week after his double lung transplant!

The following year, Ben was able to participate and led our team with gusto! Last year, we had our largest team to date, but we were missing our most important member: Ben had died a few months before the walk.

There is no cure for Cystic Fibrosis. As it takes its toll on someone’s body, it gets to a point where their best option is a lung transplant, assuming they are lucky enough to get new lungs. The cruel irony is that only 50% of lung recipients make it to five years post-transplant. This is why I’m so passionate about Great Strides and the Cystic Fibrosis Foundation. I feel like my participation is a way to do something for Ben and for the 70,000 people currently living with CF. The progress that has been made in treatments and life expectancy is awesome, but I’m praying for the day that there is a cure.


This year our team raised $1,400. Not too bad considering there were only 11 of us. I personally raised $300. Thank you so much to those of you who donated! You were on my heart during the walk.

I think the timing of the walk wasn’t the greatest (there were so many events on that day), but honestly, I also think that for some people it’s easier to not think about it. I don’t begrudge anyone that; we all grieve in our own ways. For me, it helps to participate, but I respect that for others it might make them feel worse.

The walk itself was lovely. The course was moved this year from the semi-industrial looking Fair Park to lush Vitruvian Park in Addison. This was Geronimo’s first time participating, and he loved it! Our regular walks had him in good enough shape to make the 3 mile course no problem.


Plus he got lots of compliments. Strangers wanted to take his picture and asked me what kind of dog he was. Geronimo got plenty of pets and hugs. We were even singled out by the DJ. As we walked by the stage, he said (into the microphone), “The next time you get your chow’s haircut, don’t take him to the zoo!” I responded by shouting back, “He’s not a chow!” I have no problem admitting that he looks ridiculous, but for the record, Geronimo is a red heel/Aussie shepherd/border collie mix. No chow in him.

G-mo and I walked at an easy pace with my mother-in-law for all 3 miles. I was really proud of her for not taking any shortcuts! We got the chance to catch-up, and the fact that we went slower than I would have normally gave me just that much more time to enjoy myself. Afterwards, I went out to lunch with my mom, her boyfriend, and my mother-in-law. We were all pooped from so much time spent in the humidity, so a little Tex-Mex and a lot of air conditioning made for the perfect end to the day.


Another great year of fundraising has ended, and I’m already looking forward to Great Strides 2015!

(You can read more about Cystic Fibrosis here.)

(You can register to be an organ donor here.)

(You can donate to CFF here.)

Super Bowl Sunday

For most people, Super Bowl Sunday is about football, eating, laughing at commercials. Although I’m not a huge football fan, I’ve always enjoyed watching the Super Bowl. Chalk it up to the fact that I moved to Texas during the Dallas Cowboys’ heyday. I still remember camping out on the floor of our living room surrounded by snacks (we were never allowed to eat in there) when they won in 1995.

Although Cowboy victories are a thing of the past, I still tune in each year. In 2011, I watched from the hospital with Ben and my mother-in-law. Ben was a die-hard Green Bay fan, and it was such a disappointment for him to be cooped up while his favorite team was playing just 20 miles away. We made the best of it with way too much food and running commentary throughout the entire game. (We didn’t even realize it when Christina Aguilera flubbed a line in the anthem or how silly the half time show looked – the tiny hospital tv made it look pretty neat.)

For 2012 the game was again watched with my in-laws, this time at their house. Ben was out of the hospital and approaching a year post-transplant. Stephen was in Afghanistan, so I wasn’t in the best of spirits. I showed up wearing sweatpants and spent the entire game eating spinach artichoke dip.

I couldn’t tell you who played last year. I watched the game like a zombie. A group of us hastily arranged ourselves once again at my mother-in-law’s house, once again with snacks galore, but this time without Ben. The game was held the day after he died. Being that he was a dedicated sports fan, it seemed right to watch it and think of him, to imagine him watching from the best seat in the house.

I have thought about watching the game this year. I want to cheer along with everyone else and pretend that it’s a normal day. But it won’t be. February 2nd is the anniversary of Ben’s death. A year before, I held his hand as he slipped away. The memory of everyone’s faces, red and wet as we hugged each other and sobbed, is still fresh.

Ben’s death had been inevitable. He was born with Cystic Fibrosis, which has a median predicted age of survival in the mid-30’s (Source). The lung transplant Ben received was nothing short of a miracle. It gave him the chance to leave the hospital and live life on his terms. Sadly, half of lung transplant recipients don’t live more than 5 years post-transplant (source). Ben didn’t even make it two.

If you aren’t already, I urge you to consider becoming an organ donor. You can register here. Be sure to talk to your family so that they know your wishes. If you have the means, please consider donating to Great Strides, the fundraiser for the Cystic Fibrosis Foundation. In addition to your gift helping to find a cure for those still fighting CF, it also gives comfort to those of us who’ve already lost a loved one to the disease.