welcome!

my story

I worked in healthcare for many years and was always drawn to the emotional parts of managing chronic illness. I partnered with doctors and nurses to help them address their patients as people first. I helped people living with chronic illness fit their daily self-care into their already busy lives.

I really thought I got it.

But when my five-week-old daughter was diagnosed with cystic fibrosis, I realized that everything I had been talking about for years was - just that. Talk.

I knew the lingo. I had empathy. But I did not get it.

I didn’t get what it was like to hate the word “disease” because it was ugly and deadly and not a reflection of the smiling infant in my arms.

I didn’t get what it was like to quarantine my baby for fear of germs that could leave her hospitalized.

I didn’t get what it was like to feel at war with the outside world. Where sandboxes posed bacteria risks. Where another child’s cough instilled dread. Where public spaces were battlefields to be avoided at all costs.

No matter how I much I tried to put my life into perspective and deep breathe and give thanks, I couldn’t escape the fears and “what if’s” that crept into my mind.

Over the past decade, I have grown stronger. I have learned to celebrate the blessings that come alongside the battles. To recognize what’s a big deal and what’s a minor bump in the road to be forgotten later.

I have learned to control what I can control. I have placed my daughter squarely at the center of her care team. I have partnered with her physicians and pushed them for what’s best.

I have found purpose in advocating not just for my child, but for all children living with heightened health care needs.

And I have come to respect myself for what I am today: a caregiver who is moving mountains one pebble at a time.

Through it all, I have held myself and my community to one key principle. My daughter has a chronic condition, but she is not defined by it. Doing so would be like capturing black and white alone in a world full of color. 

My daughter loves player soccer, looking for ladybugs, and telling spooky stories. She also has cystic fibrosis.

And me? I’m going to paint her in color.