Posted by in Ayrie




I’m feeling like my brain and spirit are super-charged tonight. They are making connections that I’ve never been able to make before. Here is one of those insights: it’s important to know, in the core of one’s being, that you matter.

If you knew me well while Ayrie was sick, and we were making frequent visits to Boston for his surgeries–or if you met me later and heard my story after he died–you know that I hold deep gratitude for Ayrie’s surgeon and hospital . I’ve probably shared with you that during Ayrie’s last year, under Dr. Hartnick’s care, joy and hope were restored to our family. (Maybe not to our whole family, maybe just to me.) I may even have gone so far in our conversation as to call him a hero. Why? Because he restored something in me that was missing or broken. Until tonight, I didn’t know what that was. I have only known that I am grateful beyond words for the profound shift that took place in my psyche once we started working with him.

Segway to today–At the rally tonight and on Facebook and Twitter over the past weeks I kept seeing the message #BlackLivesMatter. That phrase called out to me, but I didn’t know why. And here’s the realization that I had tonight…Dr. Hartnick made me feel like we mattered. That’s what was healing and restorative–being told and shown that we mattered.

So much of what I experienced after Ayrie developed RRP was a system telling me that my son did not matter. The insurance company kept trying to drop him even though going without insurance meant that he couldn’t have surgery and would die. Hospitals didn’t want to take us. Surgeons would tell me to comply and not ask questions. Students in one of my class (in the School of Public Health) told me that my son’s medical procedures were too expensive and he should die. I felt like I was always fighting to make people in the health care system see that my son mattered. But time and time again I was told and shown that rules, regulations, policies, and money were more important.

With Dr. Hartnick, it was completely different. Ayrie mattered. I mattered. The question was always “What is best for Ayrie?” And once we figured out what was best for Ayrie, Dr. Hartnick always let me know that everything else would be taken care of. Even if that meant opening an operating room on a holiday weekend, negotiating on our behalf with insurance companies, or hunting all over Boston find a medication that Ayrie needed right away. He moved mountains to address obstacles and remove the barriers that stood between Ayrie and the best possible care.

When a system that has so much power over the life of someone you love and repeatedly gives you the message that that person doesn’t matter… well I don’t know how to explain what that feels like. But here are some words: Rage, hopelessness, despair, powerlessness, exhaustion, and more rage. I had thoughts and feelings that were unrecognizable to me, and they were primal–they were my fight or flight response.

This is what we do to black people in our country every day in system after system–educational, criminal justice, health care, etc. So while I don’t support the violence and destruction in Ferguson, I understand what it feels like to when the system treats you or your loved one as disposable.

I’m also struggling with how to explain how restorative it was to have someone in that same system reach out and show us–with love–that we truly mattered. My heart somehow felt bigger and I wanted to pass that gift on to others. I had more energy and, it sometimes seemed, more time in my day.

So I’m feeling that the statement that #blacklivesmatter is profound. Having people tell you that you matter, or that your loved one matters, when you’ve heard the opposite for so long is powerful. When they continue to show you this is true with care, empathy, and their actions, the door opens for healing to begin. The rage begins to dissipate. The sense of powerlessness fades. And in their place springs hope and light.

All lives matter. People matter more than institutions and profit. The systems we’ve created should not come first. If we could truly wrestle with how to live out that belief in our lives and in our society, well, I think we’d be taking an important next step in this shared human journey.

For some reason, it feels important for me to put this idea out into the world right now. Thanks for reading.