Max is awake again. I walk into the room, and I tidy up quickly and quietly. I start fiddling with a few things I didn’t get to at the last feed. I weigh the last diaper, not nearly where it should be, but I chart it anyway. I swoop up the last bottle, where it had just been laying, tipped on its side, dripping Max’s modified-electrolyte formula onto our nightstand. I scribble down the number of milliliters I managed to get him to swallow, which, I notice, is also disappointing.
People say all the time, “I don’t know how you do all of what you do on top of being a new mom with your first baby.” But honestly? I can’t say I really understand their point. I mean, of course, I do, because I have to jump through a million more hoops to take care of my baby than the average mom does hers. Physical therapy exercises at every opportunity, charting every single move he makes for his PT, charting and calculating his intakes and outputs, medications 5 times a day, an average of 3 appointments a week, weekly blood work, weekly weight checks, struggling to feed him, struggling to keep him hydrated and well…on top of all the regular mom stuff. But I’ve never known anything different. This is what being a mother means to me, and that’s not what’s hard. It’s not the extra stuff I have to do, that’s the easiest part about having Max. It’s the extra worry, it’s the extra pain I have to witness, it’s the fact that my every move is monitored on paper. I have it in writing. Everyday. Every single damn day. No matter what I do. It’s not enough. There is always something that could have been done better. I am constantly reminded in all the areas I fail. Deep down, I know it’s not me. I know I do everything I possibly can to take care of my son, which is why it hurts even more. Because there’s not a damn thing I can do to change it sometimes. Helplessness. That’s the theme in my life when it comes to Max’s diagnosis.
Bittersweet. That describes it too. I can quickly clean up our room for a few minutes before I tend to him, not because he is a stellar baby (though, he most certainly is a stellar baby, always calm and well-behaved), but because he doesn’t see me when I’m there. And if he does, I’m just an insignificant blur of movement drifting in and out of his vision. And if I’m quiet enough, I can do my mom duties without him noticing I’m even in the room. I finish putting away his clothes, organizing his syringes, and measuring out his water bottles for the afternoon, then I sit down in front of his swing.
He’s laying there, swinging away, holding both feet in one hand, while he teethes on the other. I sit there, silently, and just stare at him. His eyes are wheeling around the room, shaking from the nystagmus. I wonder at the beauty before me, knowing he is the sweetest angel God ever sent to this Earth. I think about how different I am because of him, and how he has brought out the best in me. How I would move Heaven and Earth, just to see this little boy smile. How I would lay down my life for his Health and Happiness. How my whole little solar system universe revolves around him; my son.
I sit there, and I just stare at him. And I sit there. And sit there. And sit there. And he still doesn’t see me. The wonder turns to pain. My heart and soul, my only companions some days, cry with me, while I turn to stone. I sit, unmoved, and let the emotions sweep over me. I feel like crumbling to the floor, letting the oceans take me to drift alone in the vast loneliness that has flooded my chest. I want to take him in my arms and disappear, just holding him close and never letting him go, never letting him feel the pain of this world. But I can’t. And we have things to do. So I collect all of my thoughts, and worries, and feelings, and stuff them back into the black box I keep hidden away.
I force my face into the brightest smile I can manage, and say his name. After hearing my voice, excitement lights him up and he’s a smiling, kicking, thrashing mess, telling me all about his nap-time adventures and dreams, and the remnants of my loneliness disappear. A serene calmness takes over, and I realize I’ve learned so much from Max. Despite all he’s been through, he is so immensely happy. Nothing brings him down for too long; he’s the kind of resilient I wish I could be. And I know injustice should never worry my heart too deeply, because more than anything, I’m proud to be this little boy’s mother, and I love him just the way he is.
[To be continued..]