When summer finally arrived...

We met our new neighbors a couple of weeks ago.  They stopped by to introduce themselves, bringing oranges and fresh avocados from their son’s tree.  We cover the basics in our introduction.  I’m a teacher and my husband is an electrical engineer.  We have a daughter, Thea, and Delilah, our dog, is already licking them and begging for attention.  I like them immediately and can tell that they will be good neighbors.  We mention that we will be out of town the next week, flying to Houston.  It seems like a good idea to let our neighbors know.  They ask what we are planning on doing during our trip there.  Tyson and I pause for a beat.  We are going to a medical conference, I say.  I see the question in their eyes.  Hadn’t I just said that we were a teacher and an engineer?  Why would we go to a medical conference?  However, they politely don’t ask any more questions.  I feel a small flutter of awkwardness.  I am tempted to explain, but it doesn’t seem like an appropriate time to share that Thea has a rare disease called Tango2, and we are going to the first ever conference about it.  There’s a lot more information that goes to into this story and I’m not ready on our first meeting to go into it.  It’s too much of a weighty conversation for an introduction.

In fact, heavy conversations and awkward moments have become a lot more common place in my life since Thea’s diagnosis.  Tango2 disease seems to come up a lot in conversations and it’s not exactly a light topic.  It’s one that often ends in tears- theirs and mine.  I’m grateful that I have the kind of friends that I can be open with and, though they have never wavered in their willingness to listen and support me, there’s a small voice inside that wonders- When will my story just be too much of a burden for my friends?  Will they go weary of comforting me when I am struggling?  

I can tell when it’s too much for some people because before I even finish explaining Tango2, they almost interrupt me, needing a lot of reassurance that she is doing fine.  I don’t blame them for this.  I’m not sure that I would have behaved any differently had I not gone through this myself.  In fact, I think I’ve almost perfected my delivery of explaining Tango2 with just enough information that explains why they can’t come to our house if they are sick or why I need to have a few extra days off of work for doctor’s appointments, but also enough reassurance that she is doing fine and we are doing fine and there are good people working on this. 

We try to stay positive and hopeful.  We try to make sure that most of our interactions with our friends are filled with joy and fun, and we keep our mind on how she is doing today rather on what the future may bring. 

Summer fun!

In spite of this, this week has been a hard week for some reason.  It’s been a wonderful week in the sense that its summer and I have time to read books, go to yoga class, and do a few projects around the house.  I have the days to myself while Tyson is working, and Thea is going to school and my introverted nature loves this alone time.  I go to a new yoga studio now near my new home, and I’m enjoying having the time to exercise daily.  Even so, I’ve been feeling a little more vulnerable this week, there is a slight edge of grief tinging every beautiful summer memory that we are making.  I feel guilty about this- its summer, I should be happy- and I’m not sure what to do with all of the vulnerability that’s running through me during this restful, peaceful time.  Perhaps having time to slow down also gives me time to tune into some of the feelings I’ve been too busy to feel during the weeks of working and mothering. 

The next morning, I am laying on my yoga mat in the closing pose and the teacher does a reading from Elizabeth Gilbert’s Instagram post.  She says,

“Over the last 20 years, I have accumulated tens of thousands of pages of letters that I have written between myself and Love. This is not a practice that I used to do in the past, back before I got my shit together. This is a practice that I do constantly, because I have never gotten my shit together…Because my mind is a very dangerous neighborhood. Left to its own devices, my mind will annihilate me. Only Love can save me from my mind... Every single one of those 20 years of letters between me and Love starts the same way. In pain, I write: “I need you.” And on the next line, in my own hand, I write the response from Love. Which always begins: “I’m right here.” And then I allow Love to tell me what I have always wanted to hear other people to say — that Love has got me; that Love is with me; that Love will never leave me and never judge me; that Love Loves even the parts of me that I cannot bear; that Love will stay with me even if I fail; that Love will Love me even if I cannot transform; that Love will Love me even if I never cure my anxiety, my neediness, my doubt, my dread; that I will never be too much for Love; that Love has always loved me; that I don’t have any JOB to do in order to earn Love or to keep it; that I am Loved simply because I am precious; that am Loved, simply because I am Loved; that there is no end to it. “I’m right here,” Love tells me, again and again and again.”

And it’s like I can breathe a little bit again.   The line, “I will never be too much for love,” washes over me like a sweet wave of relief.  She has reminded me that love can contain my endless vulnerabilities.  I open my journal when I get home and write myself a letter that emptying myself of  all that I’ve been carrying, and then I write back to myself from the point of view of love and I know in her response that she can handle all that I put on that page and more.