Taking up the . . . Like in “the slack.” 

The direct opposite of what I scribbled one day in November 2014.

Rarely do I wake up before Julia these days and get to plunge immediately onto the page.  Into the page?  Okay, so I washed my face, brushed my teeth, made a latte with three shots of espresso—the third a treat for the day—made the bed and then opened the laptop.

The morning light streams into the living room making it almost difficult to type.  I haven’t lived in this house in the autumn but I am almost sure that this is what autumn light will be like.  The angle of summer light coming into the living room has shifted. This new light is gentler, smoother than what has shined in since late May.

Everywhere.  Everywhere all around me, the season is changing.  A few days ago on a walk, Julia and I spotted some brown leaves on the ground.  Very early victims of the transformation or just unfortunate late summer victims of overwatering?  No matter they are the harbinger of change.

Facebook posts aplenty of children being driven to move-in days at their colleges and parents feeling the first sting of empty nesting.  Oh my friends, you will endure and prosper very soon.  Younger families posting pictures of first days of many, many grades. Smiling faces, new sneakers, expectation galore. And hope.

Hope, like the joy that I have come to recognize as glorious and unearned.  Hope as a part of growing a family who believes in potential. Joy as a part of living a relatively happy life. And I recognized that I have given up all of that kind of hope even as that unearned joy has seeped back into life for me.

A day like yesterday really destroys me! By the evening I was exhausted. Tired to the bone.  I battled the dragons of the DDS and Delta Projects.  I battled my own furious spirit, trying to remain polite and civil as I asked for corrections and help over and over again.  Keeping my tremendous anger under control was at least as draining as those dragons. By evening I was very grateful for the frozen pizza in the freezer and the leftover roasted sweet potato chips in the fridge.  We ate, watched The Big Bang Theory—new to us and Julia finds it very funny— and a few YouTube videos about Tokyo. And then, went to bed somewhere close to nine without checking off the last few things on my to-do list.

And then, this morning.  And the transitioning sun through my windows.  And the urge to sit and type as soon as the latte was made.

Damn resilience!

And allow me to laugh, ryely smile at that feeling. 

Yes, I am made in such a way that doom, gloom and failure can’t live in my door way for too long a time.  As I was making my coffee, I thought–damned resilience! I was defeated yesterday. I felt the failure to my bones. I wanted to give up. Lay down and die. Lay down and let the tide of hopelessness wash over me. Drown in the ocean of social services and allow Julia to spend the rest of her life in some semblance of ‘the basement playing video games’ forever.  That is the scenario that I was not going to allow to happen.  Ever.  Ever. It is the scenario that I most fear, the scenario that all too many families with adult children with disabilities are living with every day. 

It is not that they gave up too soon, that they didn’t care or didn’t know how to navigate the dragons of a system. They gave up to save just a wee bit of sanity, or more accurately, they make do with what they have while they attend to other children, their own work life, the rest of living. They do what they can, provide the stimulation that is available, apply now and again to new programs, but settle into the knowledge that their child who is capable of so much more will be unemployed and dependent for as long as they are alive.  And every one of them is terrified because one day they will die.

Those were my dragons of yesterday. The ocean of failure that was nearing high tide.  I could have drowned in the despair that my daughter has grown in such a way to be so different from my experience and the experience of my friends. Tick off the ways that she has not and never will live like her peers. Wonder how much of it is/was my fault because no matter how hard I have tried, I have made mistakes.  Did those missteps result in where we are now? Could some different decision in some time in the distant past have moved the needle of this failure? I don’t know.

God, I had to say all that.  I had to get it off my chest.

And I woke up feeling a surge of resilience course through me and, for a moment, I could only think, damned resilience. Can’t I just wallow in my own ocean of self-pity and then just give up?

And the short answer is no.

And so, I wake up, start typing—this was not what I wanted to write about. My fingers took off without the rest of me.  I sip my coffee, Julia wanders out of her bedroom and I suggest she start the day with a bath—she loves morning baths.

And I move on.  My furious spirit needs to rest, to put down the sword and shield and stop the battle for a little while.  I can write as I started. I can spend the day planning for Tokyo and Vietnam.  We get on a plane in ten days and there is a lot to do. I have done all I can to set up programming for Julia post-travels. Probably I will come home to exactly where I am now.  Maybe during the coming week I will re-query the programs that have not rejected her yet, the ones with too many referrals on their desks, the ones who have no intention to bring in someone new. Perhaps just one—all I need is one—will be perfect and will find room for Julia.

And I will write what I discovered yesterday morning before living got so hard.

Back in November, 2014, I wrote how much I missed having someone to pick up the slack of life.  Yesterday morning, I was making the bed—pulling up the sheet and covers, folding the extra blanket, arranging pillows, and I realized as I walked around the bed to straighten covers, that on so many morning now, Ed is on the other side of the bed pulling up or folding or arranging with me.  Or I come back from the shower to a bed made. A bed made or dishes washed or a take-out dinner brought in or a new toilet paper roll or company to pick Julia or a long walk after a very hard day or a hug. 

And I realize in full that in one corner of living, it is all okay.  There is easy, unearned, ever accessible joy to be found and enjoyed. 

I have finished my coffee—nothing like that third shot of espresso to fuel an early morning write.  Julia is in the bath tub singing Japanese pop tunes at the top of her lungs. And I read the comments on that last post, on Facebook, in email and on this site.  Thank you, my dears, for all your words and thoughts and wishes.  I tear up reading, so grateful for your writings. The latest comment is:

“[Y]ou are not failing. [I] pray a miracle will come. [Y]ou are strong, resourceful, and loving. [I] pray for miracle with Julias behavior. She is a winner with a great future.”

And I discover, that is where I am today.