mama grief: when you miss mothering a medically fragile child
My magical, beautiful girl. We lost you to SMA two months ago today, on May 9th. You are written on my heart.
These days, my heart misses you fiercely. I miss everything about you. I miss the things that used to make me sad, like when you needed to be suctioned or were desperately trying to express something to me without using words. I even miss the Children’s Hospital. I miss your noises and warm, red cheeks and soft, gummy hands. I miss the old life we had with you. It was everything … it was my motherhood experience. And now it’s completely and utterly gone.
Theodore, your precious brother, keeps me busy in an entirely different way. I get to run after him and fish things out of his mouth. But, it’s not the same.
I can’t believe it’s possible to miss your medications and machines, but I do, because they led me to you.
I mothered you by suctioning the spit from your mouth and pushing 10 ml of water into your tiny belly. I poured formula and kept your room stocked with all that you needed. I talked to nurses and made up schedules and told everyone how you were, because they wanted to know. No one asks anymore. No more orders to place. Nothing to clean or put away or worry about, really. I don’t hover over you and protect myself and Teddy and daddy. I have let my mother wings down, unable to spread them as far as I used to. I think they are a little broken now.
I stay up late and run myself into the ground, because I can get a cold, and it won’t cost you your life. I have become rather careless. Perhaps that is grief, too. Grief makes me tired in a whole new way.
I’m becoming old friends with Grief. I know when he might pop by and say hello, but sometimes he comes over unannounced. It’s a little mean and inconsiderate of him, but he doesn’t follow the rules. And then, sometimes, he makes me smile/cry and fall to my knees in the kitchen (this is not new) and laugh and weep because you made me so happy and my memories are so sweet, but I miss you. He likes these bittersweet cocktails. I’m finding I like them a bit, too.
I realize now, that in the last few years, I ran at half capacity. I think that’s because I wanted to pour all my love into you, and savour every moment. At the end of the day, I didn’t have time or energy to think about things like dinner. I just wanted to think about you.
Now, when I miss you fiercely, the kind of missing that makes my stomach roll—I think of all the other mamas that are still mothering their medically fragile children. My heart beats for them.
I imagine sitting in their living rooms and feeling the love they have for their kids. I see them mother in their particular way. It brings me joy and comfort.
That was my heart, too. That was what I knew best.
I miss so many things, but mostly, I miss you.