I received a call from my mom the other night asking if I was “ok.” She had read my post about Robin Williams’ suicide and noticed that I seemed to have low energy when I took Katherine to meet my parents for breakfast a few days earlier. She was concerned about my well being, much like I get concerned about Katherine’s.

Am I ok?

The blunt answer is “no, I am not ok. I do not know that I will ever be ok again.” None of you want to read that. I am sorry to write it. Yet, that’s the truth.

My daughter, the light of my life, is regressing. In the absence of a miracle, she is expected to live only a handful of years, will become increasingly off-balance and immobile, and will experience frustration at losing her ability to do things she wants to do and did just months before (to be candid, she already is expressing such frustrations), and that is just the precursor to possible dementia, seizures, blindness, and an inability to swallow. Her speech will become harder (is already becoming harder?) to understand until she cannot speak at all.

I have a recurring nightmare (what I am saying, these thoughts come to me in panic attacks in the day more often than at night) in which I go to work while Katherine is still asleep, so I do not get to say goodbye. By the time I get home, Katherine has lost her ability to talk. I will never again hear her say “I love you soooo much” or even “daddy.” I missed my last chance to hear these words while I was sitting at the desk at which I am now typing. At this very moment and as I am writing these very words, these thoughts are so real to me that my chest is tightening in panic and tears are welling in my eyes.

No, I am very much not ok.

The truth known by rare disease families is that despite being “un-ok,” you manage. In some ways you even thrive. You have moments, even days and weeks, of pure joy and happiness; when your only tears are those of laughter and joy.

Laughter and joy are Katherine’s currency. She spends them freely. I am more alive than I have ever been. I feel more deeply than I’ve ever felt. I am better at living in the moment than before. I see genuine goodness in people around me, in friends, family and complete strangers. People who reach out to lift our spirits and to help us practically and emotionally. I see my daughter in all children and love them for it.

We do not deserve the pain of rare disease, but we did not deserve the immense blessing that is Katherine, either.

My dearest baby girl, I would go through the pain of this journey a million times in return for the joy I have experienced. As I wrote in that prayer book in Cincinnati on the day of your first MRI, “you are everything.”