Welcome to my new digs

I've been doing some remodeling here.

Sorry for the cheesy analogy, but that's truly what it feels like. Trying to give my space a new look, working the elements around a redefined purpose.  You are supposed to tackle space planning projects (or anything, really), with a purpose--and as you know, I have been wrestling with what that is for my blog.  

Much like Dylan's room in our home (sorry, more analogy), it has been painful and tough to redefine this space. With his room, it took months of brief visits, along with some crying, and eventually we started to make little, incremental changes. Removing medical equipment was the first change--and we were eager to do that, even in our grief.  Then giving away medical supplies.  Then baby furniture.  Then some packing away of his most cherished things. It was hard work.  Have you ever felt deep fatigue in your entire body and soul after something?

It turns out that the room has multiple purposes now, and one of them is still to house some of Dylan's memories.  We have his Winnie the Pooh doll, his doggy, and a couple of angel figurines on the dresser.  Other memories are in a box in the closet. The walls have been painted, and my sewing machine now lives there on a sewing table--the promise of a pleasant hobby awaiting me when I have some time to reacquaint myself with threading a bobbin correctly.  With our futon, a dresser and nightstand in place, it also serves as a guestroom--primarily for our mothers so far, which seems fitting. The window provides welcome light into our hallway, so we keep the blinds open.   

From that experience, I am slowly learning that I don't want to, or intend to, completely move Dylan's presence out of this blog, just as he will never leave my mind or my heart.  But I am starting to feel content with multi-purpose blogging.  I want to share how Dylan informed my life to be different, to be better, albeit sadder oftentimes, even after the grasp of grief has loosened.  I want to explore ideas that used to stay in my head because I was too busy, or too afraid that they wouldn't mean enough, or be expressed in a way that is eloquent enough.  But I have made a place for these thoughts.  Dylan taught me to make a place for them, and that they had value, even if it was just to me and a few others who love my family.  I think there's still more to say.  

I wrote my last post about the butterflies that swarmed San Antonio during October 2013, the one-year anniversary of his passing.  Those sweet creatures have crept into this space to lift me up once again, to help me face, head-on, such topics as my fear, my beliefs, longing, love, and whatever else I feel passionate about in this "part two" of my life.  You're welcome to join me whenever you desire.       

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.