Diagnosed No More

I'm a little nervous about making this move. But, as I've alluded to a couple of times, it seems to be time to let go.

There is no diagnosis that rules our lives anymore. Well, I don't know if that's completely true. Between my asthma and Colin's ADHD and Auditory Processing issues, we are at least influenced by diagnoses. Mine is old hat; I've dealt with asthma since I've lived here, and I know exactly what I have to do to keep it in check. I also know that, someday, Colin's issues will be as uncontroversial.

But as much as I love Dylan, and as much as it fills my heart with joy that he no longer suffers from Spinal Muscular Atrophy, I have had such a rough time extracting myself from this identity that I had assumed: the mother of a living SMA child. It is such a tragic disease, and witnessing Dylan live every day with it was what made our lives so extraordinary and special. Every day that he lived was a miracle because he rose above the confines of it, and the apparent inevitability of death from it, every day that he was alive. And I got to play a tiny role in his survival, his comfort, his happiness.

I think the grief that ensues for caretakers of kids with life-limiting illnesses reveals a Stockholm Syndrome of sorts. You never wanted your child to have a disease, yet in assimilating to your role as caretaker and assuming a very different type of motherhood than you expected, you become extremely attached to that life and, by association, its origin. Therefore, when you remove the SMA from your life, the loss is twofold; I miss my son terribly; and, oddly, I miss the privilege of being entrusted with my SMA child. It's the extra-ordinariness of watching your little miracle defy odds, and the amazing meaning that it imbues in every moment and every task, that feels as irreplaceable as him.

And so I've still got this blog that refers to this diagnosis, one year and four months after he died.

Last October, the month he was born and the month he died two years later, there was a crazy, unusual number of baby yellow butterflies in San Antonio. At least, it seemed like it.  I would see them every day as I drove around our regular stomping grounds, dozens of them, as if a huge cycle of hatching had taken place.  They were a great comfort to me some days, especially since we were approaching both his birthday and the year anniversary of his death. On easier days, they were just a nice diversion for a few seconds at a stoplight.  But I noticed them every day.  In my search for a new name for the blog, I Googled about these yellow butterflies and found a few types that were common to the Southern part of the United States and Mexico because of the warm weather.  Their formal names were nothing useful or poetic, but the flurry of little yellow wings each day reminded me of Dylan and the way his smile, the flapping of his feet, and his coos and noises uplifted me.

To truly honor your loved one, you have to separate those uplifting memories from the pain of loss.  You have to remain uplifted when the uplifter--and his diagnosis--are gone.  You may not have that identity anymore, but have to lift yourself up so that the extra-ordinariness doesn't fade away from your life.  What else is there but to be better than you were before?

So, I'm trying to let those little yellow wings that Dylan sent lift me up farther than I thought I could go, just as his life--and his illness--did. And the next time you come here, there will be no diagnosis.