Ellie’s Song

 

 

I remember hobbling along the maternity ward corridor, one hand on the railing and the other on Derek’s arm, in the hours after Ellie’s birth.  We slowly took laps around the floor.  Relief overwhelmed any pain or discomfort; I was happy to be up, to be past the dreaded surgery, to be in the clear.  

The best part of the lap was pausing at the nursery window to look in on Ellie.  I delighted in seeing her there, even though every time her face was twisted up into a deep and wrinkly pout.  Through her frown, I could see that she was mine.  She looked a great deal like us, like Camden had looked in those first days.  And she was right there, and healthy, and all was right in the world.

I have a photo I snapped of Derek holding her in his arms in our hospital room, his face radiating that tired, proud smile I remembered on him from when Camden was born. 

I remember, too, when the neonatologist came to check on her, and the way the doctor murmured to himself, almost inaudibly, that she might have Down Syndrome.  Surely he hadn’t been serious, was that really what he said?  But it was what he’d said, just as he might say he was thinking of having a bologna sandwich for lunch.  He turned her palms and feet over in his hands.  He couldn’t be sure, he said, but she showed lots of signs.  He would order testing and she’d have blood drawn and we’d find out in a few weeks time.  

I remember the joy being ripped out of the room in one gush— a cold void, a thousand questions, a wave of dread replacing it.  I remember, after he left, pulling my legs up into a ball and sobbing into my pillow.  I remember being so terribly angry.  Angry at how he’d said it, angry at how it seemed to spoil everything, angry at the possibility that it was true. 

It ruined her homecoming.  That quiet drive home was so awkward, as were those first few days making small talk with family who tried to assure us it couldn’t be true.  I remember our little family of four passing days silently together in our house, trying to act normally when nothing felt normal at all.  

I remember taking her for bloodwork and standing out in the hall because I didn’t want to watch her writhe and wail, I didn’t want to watch as they repeatedly poked at her trying to get a sample.  I remember feeling so angry I wanted to rip the needle from the nurse— whom I was sure had never drawn blood before— and throw it against the wall.  I remember feeling so irrationally angry.   And then the phone call that they’d broken the vial, and could we come in and do it all again?  

I remember the way Derek looked at Ellie after that.  No longer with joy or pride, it seemed to me, but with suspicion.  Looking at her for signs, looking at her with fear and uncertainty.  I remember feeling so hurt on her behalf that one day I stormed away from our breakfast table yelling that she deserved to be loved anyway, no matter what.  I remember feeling strongly that I could rip someone’s throat out if they so much as thought of loving her any less.  

And I remember taking her to her nursery and rocking her in my arms with tears in my eyes, wondering what it was that God had in store for her.  For us.  

But it didn’t matter, I told her.  It didn’t matter, I told myself.  And I told God the same.  I said that it didn’t matter— over and over.  That I was grateful, and I was proud, and I was overjoyed.  That she was here, and mine, and exactly what He said she was.  And I sang to her a song: 

You’re my baby.  You’re my baby.  God gave you to me. 

You’re my baby.  You’re my baby.  God gave you to me. 

So I said, “Thank you, thank you, thank you for this little one.

Thank you, thank you, thank you for this little one. 

And all that You have done, and all that You will do. 

Thank you, thank you, thank you.” 

And for some reason, even though I don’t write or sing songs, I was able to repeat that one.  And I sang it over and over and over again.  And every time I picked her up to feed her, I sang it again, let it fall over my heart, over His ears, like oil. 

The phone call to tell us she was healthy came anticlimactically.  It’s not that we weren’t relieved and grateful— because we were— but by then so much had happened already.  So much making peace and making war.  We’d fought inner battles, and cried, and grown tired, and somehow grown both apart and together.  I’d learned something of what fear and grief and uncertainty can do to a person, to a marriage, to a house.  I’d only tasted it, but I’d tasted enough.  

Enough to feel deep compassion for marriages that fall apart in the wake of a sick child, or a death.  Enough to feel tears sting my eyes when I see a child with Down Syndrome.  Enough to feel like I narrowly escaped what could have been a completely different life story.  For her and for us.  

For so many years I wished that it had never happened.  Wished for the perfect photos of a perfect homecoming to put in the pages in her baby book.  But over time, I became grateful for that strange chapter in our lives.  Grateful for what it gave me.  Grateful that because of how it ended, I can look back at those few brief weeks and then put them back on the shelf, realizing how fortunate we are as a family to have known nothing worse.  

And it was one more step in my faith journey with the Lord.  One more time I watched the power of gratitude and praise transform the quiet, fearful spaces where we sometimes live.  It was a time I remember Him literally inhabiting my song, like the Bible says He does, coming to sit with me as I sang to Him, tucking all my pain under a blanket of peace.

That song— Ellie’s song— remains.  It is still the song she wants me to sing to her before bed.  And so most nights I lie beside her and brush the hair from her forehead, scratch her back or her arm, and sing softly into her ear those same words I did when she was a baby.  And its tune gently rocks us both, weaves together her story and mine into one simple lullaby.  

Tomorrow is her birthday.  Like we do for each child’s birthday, we will cover her door in balloons, and make her favorite meals, and sing her “Happy Birthday.”  But for Ellie, I will sing one more.  One that to her is as commonplace as her health, but to me is a sweet and special reminder of the so-much-living we did together, as a family, in those her first few weeks.