What You Know

Your daughter Hannah died 15 years ago, when she was seven months old. It doesn’t take much to bring you back here: the photo of that baby, Avery, online with her bucket list*, because that’s how Hannah looked, and so you don’t read Avery’s bucket list because—well, for a lot of reasons: 1) you didn’t make a bucket list for Hannah, 2) you had a mental list of all the things Hannah would not get to do, and that seems kind of negative now, 3) you should have done more, 4) Did you do enough? 5) you don’t remember those days, 6) you remember those days too well, 7) seeing Avery’s photo makes your sternum hurt.
You don’t know exactly why you can’t read about other SMA babies, because you should do it. And you should email the parents and say that SMA sucks but there is always love and some research being done. But it would take a miracle for the research to bear fruit in time. And that is so negative. You’ve always been a little negative, especially about SMA. Thankfully, often you are proven wrong. So you could also say some kids are living longer with SMA-Type I, thanks to pharmaceutical trials and new technology. And that’s progress. That’s hope.
But even though you wanted Hannah to live longer: when she died, it was time. Even though you wanted her back the next day: it was still time. She hurt. She couldn’t breathe. She could only blink. She couldn’t close her mouth or point her finger or move anything at all on her body. These are things you know.

And you had another girl after Hannah died, one who was born without SMA (though she may be a carrier) and who last month turned 14. Megan talks back and leaves her clothes all over the floor and is as tall as you now. She makes you laugh. And when she was a baby, you just sat and played with her and held her and did whatever she wanted, for the most part, and that probably wasn’t normal or even healthy for her. And maybe that’s why her room is so messy and she often loses her pencil bag.

And one day, arguing over religion with the 14-year-old, Megan, you said that if Hannah hadn’t died, she and Megan would’ve been raised Catholic because their dad was Catholic and you all went to the Catholic Church. And Megan said, “If Hannah hadn’t died, I wouldn’t have been born.” And maybe she’s right, and maybe she’s not. And you think about that some more. You can’t imagine not having had both of them. What if you had to choose? What if Megan was right: that if Hannah had lived you’d never have had Megan? You couldn’t bear it. So you’ll take Hannah’s short life and Megan’s birth and good health. You’ll take them both as they are.
You know that if Hannah hadn’t died, maybe your marriage wouldn’t have ended when it did, but it most likely would have ended anyway. You read later that the death of a child doesn’t mean the end of your marriage unless the dam is already cracked. From all these years away, you look back and see the water trickling long before Hannah. And that’s a relief, because you never wanted Hannah’s legacy to be divorce. The marriage gave you two daughters.

And then you met a man who has good laugh lines and a gift for growing vegetables in the backyard, things you longed for without even knowing it. Now you have homegrown lettuce, four chairs around the kitchen table, and a baby daughter, Natalie (you longed for her too, yes you did, without knowing it).

And if you rewrote your life, none of this could be edited out.
You know what Hannah would have looked like because sometimes you imagine her there beside you in the kitchen—she is there—thick-haired and solid, calm. And sometimes you close your eyes and kiss her cheek that is not physically there but really is somehow there, or you hold her hand in the car for a second. In this unspoken way, you’ve seen her grow up.
You’ve never dreamed about Hannah—not in the way that, during the most difficult times in your life, your grandmother has visited you in dreams because she’s your grandmother and you needed her badly, so she came. You don’t want Hannah feeling bound to your grief, like visits are “necessary.” You know you can’t rely on your child to save you emotionally. And so you don’t. Still, she’s with you sometimes, you know.
Hannah Morgan Marshall, 10/14/96-5/23/97

There are so many things you know about Hannah, even though she died, and so many things you know because of her, that you can’t be paralyzingly sad. But you still grieve. You grieve because of the seasons. The times of year get into your bones, and when spring starts its engine in late winter, a switch inside you flips on, and your yearly descent begins into the last months of Hannah’s life.

Some years, you note the days more clearly: the end of February, when the hospice nurses started visiting; April 7, when Hannah got her feeding tube and your then-husband’s co-workers started bringing the dinners, including wine and dessert, so many nights, and the two of you had moments of enjoyment with those meals; mid-May, when she started on morphine; then the final days of sleeping; and the last wakeful night, when Hannah suffered more and then, after her nurse arrived in the morning, left you all.  

You remember the months and the years after that, the same way you remember childbirth: in hazy scenes, vignettes. Life continued, and after a period of years (How many was it?) you seemed kind of normal, you hoped, but you were changed. And that was another gift Hannah gave you: She made you not normal anymore, and you embrace that, the same way you hold Natalie and hug Megan, less lately since she’s getting so teenaged and tall, and you make a mental note right now to do that more: to hug that girl more. Because you can.
*Avery Lynn Canahuati died April 30.