Episode #19: Jan Wiese
Jan Wiese is a wife, mother of two, and teacher, who left the classroom to stay at home when her first child was born. Her role as stay at home mom expanded to include that of caregiver when her daughter Lucy was diagnosed with a rare and complex disease at age three. Over the past few years, Jan’s family has had the opportunity to share aspects of Lucy’s medical journey with various media outlets. She loves to connect with other parents who are walking through complex medical situations, and she hopes to be a source of encouragement to others by sharing her story.
“Your biggest job is just to take care of yourself, and take care of your family, and to give yourself grace.”
In the summer of 2017, Jan Wiese and her daughter Lucy were featured in a documentary called First in Human. A small crew had followed Lucy, who has a very rare disease called Job’s syndrome, as she prepared to receive an experimental bone marrow transplant at the National Institutes of Health. Jan, who has been Lucy’s full-time caregiver since her diagnosis, was her daughter’s bone marrow donor. When producers asked if they could film the bone marrow harvest, Jan said yes. Even though it was a vulnerable moment, it was important to Jan to show the world the incredible quality of care provided by the NIH, and to give hope to other people with unusual and rare diseases. On today’s episode, Jan and I talk about how she and her husband have navigated caregiving while also parenting their son, why she feels so fortunate to have found the NIH (and wants more people with rare disease to feel encouraged to seek treatment there, too), and what hopes she has for Lucy’s future and her own.
“It’s so easy to lose yourself in everything else you have going on, and not even think about what that would look like to enjoy things just for you.”
Here are some of the things Jan and I chatted about:
What it was like when Lucy was first diagnosed with Job’s syndrome, and how it progressed
Lucy’s yearly episodes of pneumonia, which indicated the serious trajectory of her diagnosis
The list of symptoms and challenges that, now ten years old, Lucy faces on a daily basis
How they got connected to the National Institutes of Health (NIH), and the difference it has made
What a typical day looks like for her and Lucy, and how she’s learned to take time for herself
Her journey to seek out her passions and identity beyond her role as a caregiver and a mom
Why she began a routine of spending a night at the Children’s Inn at NIH before heading home
The complexity of parenting one child with a chronic illness and one who lives a “normal” life
Why her son, Joel, has compassion for others and tends to look out for kids who are different
How Lucy’s story was chosen to be featured on the Discovery Channel documentary First in Human, and why Jan thought it would be helpful for others to learn about Lucy’s experience
The close, supportive relationship she and her family developed with the show’s producers
The in-depth Washington Post feature story that spotlighted Lucy earlier this year
Her hope that, in the future, Lucy is neither defined by or ashamed of her illness
“Sometimes, it’s hard to explain to your friends and family how your life is impacted by this when it’s so rare and unusual.”