Taking the Boy to Huntsville

I had an amazing opportunity to take Merrick to Huntsville, Alabama and the U.S. Space and Rocket Center. For my bonafide space nerd, this is what dreams are made of. And this dream was made possible with a grant just for kids with a parent or caregiver in treatment for colorectal cancer, or who has passed from the disease.

Our trip got the attention of a news editor with AL.com, and this article is the result:

I also wrote a guest blog for The Colon Club - the organization that makes The Kimberly Fund possible. We were grateful they gave us the chance to head off for some mother/son bonding over Saturn V and missions to Mars.

Creating Experiences to Last a Lifetime
Guest Blog for The Colon Club

On the night I was diagnosed, I came home and nursed my baby boy to sleep through uncontrollable tears. As is the case with most babies, he was obsessively in love with me and I with him. My only thought as I stared down at him was if I would live long enough for him to know how much I loved him. I couldn’t help but wonder if I would die before he and his older brother would be old enough to remember me, and I wondered how could I love them enough then to last a lifetime if was not there.

As I tackled my diagnosis, surgery, and the lifetime of treatment ahead of me, I knew I needed to shift my parenting priorities around and work hard on not only loving them enough to last that lifetime, but creating the life moments that would lead to lasting memories. I needed to focus less on things and more on experiences, and I needed to pour into them the moments that could ultimately shape the men they might have to become without me.

One day my oldest came home from preschool passionately clutching a NASA bag in his hand, and quickly spread its contents on the floor. An engineer from a nearby NASA facility had visited his class, and my little boy who loved LEGOs, puzzles, how things worked, and anything that flew realized his future. He wanted to build things that went to space.

With my new found focus on parenting, I set out to encourage and build in him this interest in space and evident talent for engineering. He spent a week at Johnson Space Center in Houston doing a robotics camp, and I took him to the California Science Center to see the Space Shuttle Endeavour – where we made a pact to see the other three shuttles on display around the country. There were books, movies, documentaries, planetariums, and engineering classes to add fuel to his fire. We followed the path of the International Space Station, kept up with the astronauts living on it at any given time, and even had the chance to meet former ISS Commander – Col. Chris Hadfield from Canada.

In a chance meeting on Instagram, I became friends with Chip Moore, a fellow stage IV colon cancer patient who happened to work for NASA at Marshall Space Center in Huntsville, AL. He would post the occasional cool photo from work, and I’d always make sure my future aerospace engineer saw it. It was a causal invite from him to visit Marshall Space Center that got my wheels turning toward my son and my quest to parent by way of experience.

What would I give to get my boy in front of real rocket engineers! Men and women that crunched numbers, determined trajectories, and contributed on a daily basis to the U.S. space program and our future mission to Mars. I knew it would be the very experience I wanted to give him as part of my “pour into them now” parenting plan. But in the midst of medical bills and other exotic memory-making vacations, setting aside the time and money to take Chip up on his offer wasn’t a priority. As much as I wanted my son to see a place full of so much space history and innovation, I also wanted to take him on our annual family trip to Cayman, and pay for those dive lessons he was finally old enough to take.

While talking with Colondar featured survivor Doug Dallmann about this standing invitation to NASA, he told me about The Kimberly Fund and encouraged me to apply. He knew the sacrifices my boys have to make growing up with a mom that has cancer. My oldest alone has been to more chemotherapy sessions with me than most cancer patients themselves will ever go to. The Kimberly Fund was the opportunity to not only expose him to what his future could be, it would provide us the chance to spend time together outside of the infusion room. Hanging out with mom doesn’t always have to be cancer related. The grant was exactly what I needed to get my boy to Huntsville, AL, and this invitation to visit NASA and the U.S. Space and Rocket Center was just the experience The Kimberly Fund was set up to provide.

As I continue on with endless treatments to keep my cancer stable, I will continue to look for those invaluable experiences that shape the way I parent now. But this trip to Huntsville was an experience that would not have been possible without The Kimberly Fund and The Colon Club, and for that I’m grateful. It provided me with an amazing opportunity to see my son light up with inspiration, and forget for a few days that cancer ruled our world.

If you are a parent or caregiver currently in treatment for colorectal cancer, or know a child that has lost a parent to this disease, I encourage you to look into the The Kimberly Fund. For more information, visit: www.colonclub.com

Admiring Saturn I.
Apollo 16 Command Module "Casper."


Unsympathetic Sighs

I’ve always said having to deal with cancer while raising young children trumps all in the world of adult cancer. A friend of mine passed away this morning from this disease, and the little miracle girl she and her husband spent 19 years hoping for will now grow up without her mommy because of colon cancer. Everyone within spitting distance suffers from the loss, but it is utterly unfair that these children have to suffer or have their innocent childhoods altered.

View from my chemo chair.
You’d think after 6 years and having (now) school-aged kids that I would have worked most of the kinks in this “parenting with cancer” business out, but I haven’t. Friday was another example of why there will always be bumps in the road reminding me that managing this disease often requires additional hoops to jump through - and heartache to battle.

I still flash back to my first year of chemo, when I shared an alcove in the infusion room with a group of middle aged men fighting prostate cancer. Every time I walked into the room, I wanted to yell at them as they sat in casual conversation with their companions. There I was trying my best not the throw up due to chemo-induced anxiety, as they sat there waiting for someone to bring them a fast food lunch that would surely send my teetering stomach over the edge.

I wanted to point at them in accusation, knowing they were sitting at home in their recliners the night before watching Wheel of Fortune while I was at Target buying enough diapers, wipes, and baby food to last me the next week while I recovered. They looked like they hadn't a care in the world, while my heart and mind were always burdened with the care and concern I would not be able to give my boys in that coming week.

This week the scheduler(s) in my infusion room scheduled me for an early infusion, despite my continued reminders that I can't come in until I've dropped the boys off at school. When I called to reschedule, they didn't have any later appointments available, and the scheduler I spoke with made no effort to accommodate my "special situation." All I got out of her was an unsympathetic sigh and zero empathy.

And by special situation, I mean that unlike 95% of the people in the infusion room, I'm trying to juggle this all while parenting young children. Parenting when you're just a normal person is stressful, parenting in the midst of cancer and chemo is like the icing on the cake of cancer stress.

I hung up and lost it. I’m rarely emotional in general. And rarely emotional about all this cancer business. But when someone doesn’t have just a little bit more understanding for me because I’m managing my care around raising these boys, it flips the emotional switch that reminds me how much harder it is for me and anyone other parent in my shoes.

Despite being a frequent flyer, I’m not asking for first class treatment in the infusion room (or from the boy's teachers as they waltzed in to class late because they had to go to chemo at 8 a.m. instead of school). Just a little more grace and a few less unsympathetic sighs. My juggling act has a few more balls thrown in the mix, so please be helpful as I try to manage my disease. I don't need to be reminded that this sucks.
He got to eat infusion room cookies at 8 a.m. and be late for school. Sounds like a pretty good morning for him.