Finding Inner Peace

Cassandra comes from a long family history of hemophilia.  Starting with her grandmother who passed it down to her father, then herself, and now her son, she describes her journey as phases of transition from being a daughter, a patient, an educator/helper, and now a mother, all beautifully protected by a bond between herself and her father that she now shares with her son.

​When Cassandra was very young, her parents explained that she bruised easily because she was a carrier for hemophilia.  However, the reality of it did not sink in until she was a junior in high school.  She was an athlete excelling in her sport, pole vaulting, when she started to experience shin bleeds and was diagnosed with hemophilia.

She continued to pole vault through her college years, but her disorder presented many challenges.  Cassandra did not know any other athletes with a bleeding disorder and was frustrated with how quickly others recovered from injuries, while she suffered for weeks.  She often felt isolated by not being able to participate in practices and spending lots of time in the training room doing physical therapy.  She was never really afraid of her hemophilia because she was “a bit ignorant of it.”  In all the years she watched her dad work through his disorder and infuse, she did not realize that she was also affected by it and that was why she was getting injured so frequently and not healing properly.  She began to seek advice from her father on how to manage her hemophilia, even preferring to call him before calling her HTC, because she has so much trust in his knowledge and experience.

She started using meditation in her sophomore year and began to understand the effect of stress on her body, growing in the understanding that she experienced more muscle strains and bleeds if she vaulted while tense. The following year, her dad introduced her to tai chi, which had a huge effect on her sport and she learned to maintain a relaxed state while vaulting resulting in reduced injuries.  During this time, she also started using prophylaxis before track meets and the benefits were immense, allowing her to continue vaulting into her senior year, even setting a record at her university. 

After college, Cassandra got involved with the hemophilia community with the help of Medexus, by conducting educational talks and teaching tai chi classes.  While she still enjoys being active, her hemophilia journey evolved yet again with the birth of her son 1 ½ years ago.  “I’ve been transitioning from a hemophiliac to the mother of a hemophiliac.”  

Having a child with hemophilia has been the most difficult part of this journey, an aspect that she says is devastating.  “Initially I had guilt about ‘what have I done?’ I felt like I caused it.” Her feelings of grief and anxiety were exacerbated by watching her son go through bleeds.  “I wasn’t really prepared.  I didn’t know how hard it would be to watch him be infused. I feel grief when I see him suffering or struggling.”  However, by using meditation for self-care, Cassandra has learned to gain acceptance of her disorder and avoid slipping into self-pity.  “For the most part, I’ve accepted that it’s not my fault.  I think about the joy and happiness that Clyde brings into my life.  If the universe decides that I am to have another child, it would be a huge blessing.  If the universe decides that child will have hemophilia, we’ll move with it.  No matter what happens, I have faith that the universe will take care of me because it always has.  This is what gives me strength and courage to face it.”  

Cassandra’s journey has brought her through many transitions which she has learned to embrace. “Before the focus was all on me, on my own self-care, making sure my bleeds were taken care of.  Now there’s been this transition where I still have to take care of me and find a balance with taking care of others.  It’s helped me to grow as a person.”

Cassandra’s message of hope is for new parents of children with a bleeding disorder.  “No matter what life gives us, what hemophilia gives us, those challenges will always make us stronger and turn us into better people.  To new parents, know that you are strong enough to take care of it; just open your heart to the situation.  Know that many people have walked the path and there is hope.  Because your child has a bleeding disorder, there’s a large community waiting for you to join that is filled with love and support. Within this challenge are many blessings.”

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