He’s almost 2 and a half years old.
Beautifully. Wonderfully. Magically. He’s still here.
Even though two nights ago, he stayed awake for hours past his bedtime, screaming, yelling and cursing at me. (Yes, he swears but not in the conventional sense. It’s more of a gibberish word and a tone that’s absolutely meant to cuss you out.) After demanding me to lie down beside his crib, he grabbed everything he could get his hands on, lobbed it over the rail and hit me squarely in the face. His aim was uncanny, or totally deliberate, I can’t decide.
And yet I wouldn’t trade it. I wouldn’t ask anyone else to do it for me or wish for it to stop. Because it can stop, so quickly. Despite living in a very carefully constructed bubble of daily denial, I fully realize our mortality. His mortality.
Sometimes, when he is asleep and I get into one of those destructive pensive moods, I forget that he’s still here. That he lives and breathes. It’s so easy to get consumed by the emptiness of having a sick child. The despair and constant grief that comes with living with a dying child.
There was a time I grieved for so much. For the baby I expected, the life I thought I should be living, the childhood I thought my daughter would have, for the future I thought was certain. It took me a long time to just understand that this reality was genuine; this was my life, regardless if I was prepared. I had better adapt and enjoy what small happinesses we have before it’s too late and I find myself drowning in possibilities that are not, and were not real.
I write and I cry in silence and then all of a sudden, he wakes, yelling for me, his dad or his sister, and I am pulled back into an alternate reality where he seems fine, he plays, he talks. He’s delightful and adorable. A tiny tyrant that demands pretzels and Lego but does it with the biggest grin. Besides, it’s not so bad. It’s just a few medications to give every 4 hours; it’s just a few choking spells that make you jump up and run to his side; it’s just the screaming frustration that he has because he can’t move around like his sister. It’s just the cool fingers and toes, the blue lips, the exhaustion from a few steps. But you smile and love and teach and play because you are the mom, and moms don’t stop. Somehow you have to power through it. You can’t stay in bed and cry. You can’t stay lying on the floor while the kids play around you (although you’ve given it an honest effort.) Now there are other people counting on you. If you stop, he stops and that is not an option.
So if I look like I haven’t slept in weeks, had a proper shower in days, shoved anything in my face except coffee and leftover Cheerios, it’s because I most likely haven’t. And I wouldn’t change a thing.
(Except maybe for a new heart. I’d take that.)