Home of the Four Trans

Our hotel room in San Diego overlooking Mission Bay was quiet. I was the first one up after a long night of Nathan’s screaming. He was then sprawled across the king sized bed, with his arms and legs contorted in an unnatural position, and his head tilted back, breathing in every ounce of sleep. Loi was rolled to the edge of one side of the bed. I had been called up by Loi’s mom to fetch some breakfast in the Regency Club room (where they served 2 meals a day for an additional fee to the room, plus unlimited free water, coffee, and hot chocolate).

Before starting my day with a tooth brushing, hair combing, and face washing, I stopped by the sectional-turned-bed to check on Justin. He laid there on his back, with his head against a white, fluffy pillow, eyes closed, breathing comfortably, with his arms in a u-shape above his head. I lingered at this sight for a few minutes, taking in the fact that he was here with me, breathing. My stomach fluttered. It was like looking at my newborn child for the first time in complete astonishment that this child was mine. Like, how the heck did this happen? I have a child! But, in this case, it’s more like, he’s mine, and not completely perfect, but so perfect, and he’s here…still here.

And, we were on vacation. 16 months ago, I could not have fathomed taking Justin anywhere beyond the hospital and our home (remember, germs?). This past week, I’ve taken Justin to Disneyland (uh, germs central) to view the Electrical Parade and to absorb in the Disney scene, and on a boat ride around Mission Bay Lake in San Diego. He’s sat in restaurant high chairs (that were sanitized and covered in our own seat covering material, of course), lounged by a very busy public, hotel pool underneath a cabana, and experienced a bonfire while his cousins and brother were roasting marshmallows for their smores.

The chaos generated by his cousins, Nathan, admiring strangers, and activities sometimes distracted me from seeing this all for what it is–that Justin was alive and well enough to appreciate the chaos. He would squeal ahhhhh! in delight, bat his arms up and down, and bounce on his bum whenever anyone spoke to him. Or, he’d look for some attention, just by staring someone down until they’d say something to him. Sometimes, he’d even play hard to get and turn his head into my shoulder as though he was shy.

Although I’ve loosened up a bit, reality is I’m still scared as heck that something, anything could happen to him. I find myself still checking on him (to make sure he’s breathing) every so often while he’s napping or sleeping. I look out for signs of his heart or pacemaker failing–is he puffy? pale? breathing fast? not eating well? tired too often? different?

He’ll be turning one this coming Friday, but, I find myself not really wanting to talk about it. Don’t want to say why…

But, this past week has made me realize how far my Justin has come, and how much my perspective has changed. Very few moments that I spend with him are wasted on thinking about what I’d be doing next or in the future, and where we are headed. Every moment I spend with him is for him for that moment. I focus on appreciating the fact that he is breathing, alive, and happy…so happy.

I must admit that the darkness of the night, in my bed, is where I’ll reserve for my deeper, more anxious thoughts about surgeries, heart transplants, insurance, bills, etc. I’m only human, and fear will sometimes persuade me.

As always, though, seeing his smiley, sunshine face reminds me to appreciate, appreciate, appreciate.