I started writing this as my girl lay napping next to me on her bed in BARC in the late morning.  I suspect the meds play a part in making her sleepy, though she said she was too excited to sleep last night, waiting to see me.

I came into Fort Lauderdale yesterday but it’s different these days—we do what’s necessary for her body and those around her to be safe, which means I visit with her at BARC, for a block of time in the morning and another block  this afternoon, not taking her out, especially not keeping her out with me overnight like I used to.  I fly back home tomorrow.

With Maria, there have been so many lessons and each time with her is another. Instead of getting to shed restrictions and do more things with her, for now at least, it’s back to basics. We watched part of a movie on my iPad and we held hands. She asked me to run my fingers through her hair as she fell asleep. Her hand rested on my arm as she slept. For now at least, this much must suffice.

I realized how tightly I’ve bound and put away the grief of those days when she visited us in April.  I let go of that kind of sadness in carefully measured, small bits, because to take it out and look at how much pain was contained in those days is overwhelming. I get to function that way.  But it means I am wrapped up pretty tight.  And when  I see her again,  the only thing that counts is, this is my daughter.  She  breaks open my heart all over again.

The new way is hard. Seeing her at BARC, we can color, watch a Netflix movie, take some short walks. I can watch her nap, as I did this morning. But this afternoon, I sensed that her schedule is really important right now and I have so very little I can give her in its place. So the time was brief and the leave-taking simply devastating for me. I got in the car and drove away; I did what I’ve learned to do: the next thing.  I went to IKEA and got my dad herring and Marabou choclade, and salmon roe spread. And then came back to my friends’ house.

They have a dog named Duke, a dog I wrote about years ago, who still remembers me from when we used to live in SoFla, who loves me enough to bring out his blankie and go round and round me enough to wrap it around my ankles when I come in.  After a while, he and I went out and played fetch, his happy self bounding back to me each time he caught the ball, just happy to have caught it, so extraordinarily willing to be with me, not with artifice or pretense or expectation, just pure playfulness. He was my comfort.

My daughter. Oh my daughter.