May 15: It's Complicated

I have a complicated relationship with May 15.

MPS Awareness Day.

For years, our family and friends wore purple. I would post about our ever-evolving experience with the disorder. I shared at Anni's school about why she was the way she was, about differences, and a kindergarten perspective on genetics. I sang one of my favorite songs from Mr. Rogers, "It's you I like, it's not the clothes you wear, it's not the way you do your hair, it's you I like..." I will never forget the little boy in Anni's kindergarten class who cried as I sang that, feeling so deeply the truth that in many ways, Anni was just like any other kid. I shared fundraisers, championing families would were raising money to fund research or finding ways to support the families facing the financial challenges of a medically complex kid.

Then Anni died.

For about 6 months, I couldn't bear to look at MPS. I had a visceral reaction to purple. I would catch a glimpse of a photo from a fellow MPS parent, my eyes quickly scanning their post about their child's first seizure or how they were wrestling with the decision whether or not to get a feeding tube. I was so tender to the plight of other families, I had a difficult time tolerating the waves of grief that regularly filled my eyes with tears.

Slowly, I was able to look again. I was able to get back into grief spaces with families. I was able to talk about how things ended with Anni.

My relationship with MPS has evolved, and in many ways expanded into more advocacy than before.

I have seen the challenges families face within the medical system. They’ve experienced immense financial strain, long trips to specialists, moving for clinical trials or to be closer to hospitals for their children. They’ve fought with insurance companies to provide care for a good quality of life. Families have completely burned out because consistent and qualified respite care is rare. They have dealt with loneliness as their social circles have shriveled and all but disappeared.

And…

Parents have shared how their child has changed them. Yes, their lives change in all the expected ways, but they were not anticipating how much their sense of meaning has deepened. They’ve reported more awareness of injustices facing people outside of their small circles. They have found unmistakable joy alongside very dark grief. They are resilient. They are courageous. They have to think about things that most people dare not look straight in the eye.

MPS Awareness Day means much more than just being aware of this disease. It’s to be aware that everyone has a story, everyone has a challenge they’re not sure how to get their arms around. Everyone is paddling in the rapids, and at times, they’re not certain they won’t go under. I’m not taking the spotlight away from parents who are facing the realities of what MPS does to their children. I am suggesting that this day doesn’t make MPS any better or worse for those who are intimately acquainted with this diagnosis. Please take your awareness into all the corners of your life and actively look for ways to support the other humans in your life. If you happen to have the luck to have an MPS family in your orbit, give them an extra hug today, and keep showing up tomorrow.