The Gift of a Broken Scone
By Renae Baker
“Every little, minute detail has a huge effect on what happens.” Cassandra is describing – wait for it – pole vaulting! “It’s kind of a perfectionist’s sport. What I love about it is the technicality. You improve by changing little things; like the way you’re running on the runway before you’re even vaulting!”
Cassandra, her husband Paul and their two-year-old toddler, Clyde, seem to be very grounded people with a passion for life. Cassandra’s father, Coalition member Rick, participated in The Beats music program where he gave a soulful performance in the inaugural concert in 2019 and again in the virtual Mini Beats program last year.
Growing up with Rick as her father, hemophilia B has always been a part of Cassandra’s life. “We knew that I was a carrier, but I wasn’t tested until my junior year of high school.” Her recollection is that her initial diagnosis was that of “symptomatic carrier,” but that her HTC changed it to “mild hemophilia B” pretty quickly, for which she is grateful. She understands the health insurance barriers that can come with the nuances of diagnosis. It was the joy of pole vaulting that led to Cassandra learning that she did, indeed, have the bleeding disorder.
“I had started pole vaulting, so I was wearing my spikes which had no cushion on the foot. So, I had really bad shin splints, and they weren’t getting better. My parents had warned me, but I didn’t really understand that I could be affected by hemophilia. I also didn’t understand that Ibuprofen could cause more bleeding, and I was taking it every day just so I could practice. One day, Dad realized what was going on and said, ‘Wait a second!’ That’s when we called the HTC, infused and I got tested.” She wasn’t surprised to learn that she had hemophilia. “On some level, I guess I’d always known because I’d always bruised easily, had joint pain and other injuries.”
Cassandra didn’t let the diagnosis change much in her life. She simply adopted a new awareness of her bleeding disorder, made sure she had a factor supply and was mindful of the risks which could affect her long-term mobility. She continued pole vaulting through college.
“Another reason I love pole vaulting is that I realized that it’s a mental game,” Cassandra continues. “You have to really master your mind in what you tell yourself. If I had any hesitancy or thoughts of ‘I can’t do it,’ then that’s what happens. You have to constantly be telling yourself ‘I’m going to make this! I’m going to DO this!’
What Cassandra has been doing with her pole-vaulting practice is manifesting positive outcomes, which – one could argue – is a great practice for life in general. She has applied the wisdom she has gleaned from the sport to other areas of her life and has had other outlets, for pole vaulting, since leaving academia.
“For one outlet, I started training for American Ninja Warrior, because it’s very similar in the mental challenge aspect. I loved it, but there was something missing. I could be doing very well and succeeding at some of these things, but the satisfaction was always short-lived. I realized that – although it’s great to work on and improve my skills – I needed to find that missing element.”
That search took her from Nebraska to Illinois to Montana to Colorado and – as they say – to her own backyard, where her father invited her to participate in a Tai Chi class he was leading. She found and enjoyed communities of people that raised her awareness of her spiritual self. She began to realize that what was missing could be realized through meditation, Tai Chi and developing her spirituality. And then she met Paul. Cassandra was working in a coffee shop in Mesa, Colorado when he walked in.
As Paul says, “I went in for a coffee and a burrito and saw her. Sparks flew!” They talked for about 20 minutes. Cassandra was stocking the baked goods when she came across a broken scone. One of the perks of her job was that the employees got to keep the broken scones. She thought, “I like him. I think I’ll just give him this broken scone.” He liked the scone but didn’t pick up on the significance of the gesture, he says, shaking his head and laughing. “But I did find out that she was new to the area.” So he invited her to call him if she was ever in Grand Junction, about 40 minutes away.
Spoiler alert: She called him.
“Very early on I told Paul about my hemophilia B,” she says. “It was our second date, and I had a shoulder bleed, so I said, ‘Hey, wanna watch me infuse?’”
“I can tell you exactly what was going through my head,” Paul blurts out, with his eyes getting big. “I’m not a big fan of needles!”
Cassandra is laughing at the memory.
“Wait,” Paul reenacts, “You’re…you’re getting out a needle? You’re gonna poke veins?! I’m holding my breath and thinking, ‘Oh gosh - that’s gross!’”
Cassandra is almost falling off the chair with laughter at this point.
“But I was impressed.” Paul comes around. “I was like, ‘Wow, this is quite the process! Pretty crazy to know how to do that!’”
Cassandra gave him what Paul calls “the elevator speech,” and he quickly understood that she’d lived with hemophilia B her whole life, and it was no big deal; just something she had to do.
Indeed, Cassandra grew up watching her father infuse at least three times a week. It was just a normal part of her family’s everyday life. “I never thought anything about it, until I started having problems myself, and then I thought, ‘Oh wow – this is what he’s been going through!’ With her eyes opened to the challenges and struggles her dad had been facing, her respect for him grew. “It totally changed my perspective. It made me have more compassion and admiration for him.”
Paul is a supervisor for the Bureau of Land Management. “In other words, I sit at a desk and tell send other forest rangers out to do fun stuff,” he says, clearly missing his days as a forest ranger working outdoors in Colorado. Clyde was born in Colorado. Paul’s promotion to supervisor brought the family to Montana.
Paul and Cassandra enjoying exposing Clyde to the great outdoors they have enjoyed all of their lives. Before Clyde was born, the couple talked about their mutual desire to have children, and the possibility of their children having hemophilia B.
“When I was pregnant with Clyde, I wanted to have an all-natural birth with midwives at a birthing center. The midwives were saner than I was, and insisted on us having a hospital birth, but they were the ones delivering the baby.” Cassandra relates, “The birth was great!” She had learned that meditation can be a powerful tool during birth.
They had Clyde tested for hemophilia immediately after the birth, but wouldn’t know the results for a couple of days. Meanwhile, Clyde developed a hematoma on the back of his head in the next few hours. They suspected that the test would return as positive. The hematoma worsened as the day progressed, so a decision was made to infuse that evening and the next day. “That was challenging,” Paul admits.
Cassandra piggy-backs, “It is very hard to find the veins in a newborn infant. Watching him get poke after poke was hard.” Cassandra’s parents soon visited which was a great comfort to the couple. “It was very cool to have my dad there and connect in that way.”
The test results came back with a diagnosis of “severe.” After that initial first week, they didn’t have any problems for about several months. “For the first eight or nine months, I wouldn’t have known he had hemophilia; no bruises or anything,” says Cassandra, incredulously. “But he also wasn’t very mobile…”
“Yeah,” Paul interjects, “Once he started crawling around –”
“He got a knee bleed pretty quickly,” Cassandra finishes.
It became obvious that weekly infusions were necessary. The hospital staff did their best with Clyde’s tiny, little veins, but - as Paul tells it – “It was really challenging watching them blow through vein after vein.”
I recall that it must have been doubly challenging for Paul considering his feelings about needles, and Cassandra is quick to give him praise, “Actually, it was really cool the way Paul challenged himself, all through the pregnancy, making himself watch blood draws.”
They made the decision to have a port implanted. After several months of help from a home health nurse, Paul and Cassandra now infuse Clyde through his port on their own weekly. They have learned so much in two years, and it all started with a broken scone.
“What’s really cool is that having Clyde has sort of linked me with my grandmother,” Cassandra says. “I had a conversation with her. We talked about my dad when he was Clyde’s age. He spent a lot of time in the hospital!” She’d like to hear more stories from her grandmother, who had two sons with hemophilia. “I’d like to tell her just how much I admire her for her strength, courage and ability to still be present for her other children while dealing with the challenges of hemophilia.”
The transition from self-sufficient adult being in control of her own life to not being able to control everything in her child’s life has been quite the experience for Cassandra.
“Looking back, I always tried to have so much control over my life. As I’ve developed my spiritual life, I’ve become more trusting in the universe and accepting that I can’t control everything. There is a reason that Clyde has hemophilia. It’s not just a random thing that he has to suffer through. It’s all part of a learning phase that is part of a grand plan.”
And Paul has had to transition from not having direct experiences with hemophilia in his life, at all, to having a father in law, a wife and a son with hemophilia.
“There’s definitely a lot to learn. It’s mostly about logistics. We like to travel and spend time outdoors, so it’s more about ‘Okay - how are we going to do that with the hemophilia? Where and when to infuse?’ It’s a new way of life.”
Cassandra, ever-ready to give Paul accolades, chimes in, “One of the things that I’ve noticed about you is that you’re just really accepting of the whole situation. You don’t fight it at all. You’re like, ‘Okay, this is what’s happening. Let’s move with it.’ It’s been really helpful.”
Paul attributes this to his “go-with-the-flow” personality. “Definitely, what has changed my perspective with it is understanding the history of hemophilia. I’m very grateful that we do have medication. He’s had some bleeds, and he’s been in some pain, and we have to do this thing every week, but thank the Lord, because just a generation ago the hardships that Cassandra’s father went through - Wow! Just understanding that makes me realize that this isn’t that bad!”
Paul has learned a lot about hemophilia through Cassandra. They also watch documentaries, and he has found a heightened interest in history because of hemophilia. “Rasputin! He was around the royal family because the little boy had hemophilia!”
Cassandra makes a pitch for the power of community: “I wasn’t really plugged into a hemophilia community until after college. Then I started being asked to do some speaking programs, and then I was turned on to the Gen IX and mentorship programs through The Coalition for Hemophilia B. That really opened the doorway for me, and I began to realize how much I’d been missing out on by not being in community with other people with hemophilia B, because we share so much in common. There is so much strength and hope we can get from listening to each other’s stories and learning from what they’ve gone through. I started participating in more events, and it’s like a family to me each time I go to an event. Dad and I went to the advocacy training event in the fall together. That was a great bonding experience!”
Some core tenets Cassandra espoused during her pole-vaulting days are still serving her well and helping her family to thrive: being fully present in every moment, training her mind on positive messaging and being mindful that little changes make huge differences. “I’m continually improving myself just to be a better person, a better wife, mother and contributor to society. I’ve found that it is the little things that make all the difference, and those little moments exist in the present. Did I meditate today? Say my prayers? What was my attitude? What am I thinking right now? What is the tone of voice I’m using with my family? Is it kind and gentle or tense and stressed? Am I being present with my son? Am I fully listening to Paul while he’s talking? While these things may seem small, each one can have a big impact on how the day unfolds. Every little action or thought or word we say is what makes up our reality and it’s by being intentional and aware of what’s going on right now that we create our future.”
Carrying this practice in her hemophilia experience, she says, “The little things are the thoughts and attitudes I have around the bleeding disorder as well as taking the extra precautions when I’m traveling or doing activities that could potentially cause a bleed. When I do have a bleed, what am I telling myself about the bleed; that I deserve it? That I’m being punished for something? Or can I open my heart and give myself extra love, both in thought and action, with the awareness that this is a challenge and obstacle that I can overcome, learn from and become a better person from.”
Maybe most important is the golden rule: Don’t hesitate. Go confidently in the direction of your dreams. Hey, you never know what could come from the gift of a broken scone!