Dear sweet Case,
I watched you sleep last night.
I listened to your steady, raspy breathing and pretended that all was well. That I am a normal mother nostalgically watching her child grow up. That you are a child growing up.
It’s been seven years, three hundred and thirty-four days, ten hours, and thirty-two minutes since I realized that, in all likelihood, I would someday plan your funeral.
I fear that I’m not strong enough for that. I fear I will cease to exist the very moment you are gone. Like mated butterflies that catch an unexpected breeze, we will be lifted up together.
I spent two years of your life watching you learn and eight years watching you love. I’ve lost the ability to care if you learn (psssst… don’t tell your teachers). I just want you to love me. For a very long time.
I wish I could explain to you all that has happened in your ten years of life. I wish you could see the miracle you’ve become.
“Who’s a miracle?”
I choke out those words on occasional evenings, tucking you in. You grab my neck and pull me close. If you remember to say “Case is!” I’m always hoping the truth of that statement is slowly sinking in.
Really though, it’s just for me. And I’m embarrassed at my selfishness in having you repeat it.
But the twinkle in your eyes when you respond brings me back each time, hoping that one day you’ll understand.
I start another
test nighttime ritual. “I love you.”
You remember this one. “I love you too.”
“I love you more.” I do. I really do.
“I love you most.”
Your smile beams your pride at completing the exchange.
Even my expressions of love have become proxies for my ultimate question:
Will you love me forever?
I’m sorry that I can’t let it go. I’m sorry that I can’t just love you with abandon every moment I have you and not worry if there will be another.
You deserve more than a broken love.
I put on a good front.
But in those quiet moments, when you’re tucked in your
Minion Millions pajamas, wrapped in a weighted blanket I carefully designed for you, it’s just you and me kid.
Just like when you tossed and turned in my womb and no one could separate us. Long nights of no one else but us. Your dependence on me and my utter surrounding of you.
Isn’t that motherhood?
Not much has changed.
Except that a part of me died when they told me you were dying.
I clung to you for survival, whether mine or yours I’ll never be sure. And I watched.
You kept on, unaware that I watched so closely. Unaware that time had become our enemy, birthdays our reminder.
But on the occasion of your birth, I am reminded that you are the gift. You are untethered to the weight of this world, floating with the lightness of joy, innocence, and unconditional love. You bounce on the whims of the wind, unconcerned about its dangers or its destination.
My heart aches for a world that sees your joy as a disability instead of a superpower.
I often want to borrow your innocence.
If I was unaware, the fear would not steal my joy at times. But if I was unaware, I would forget that each day with you is a celebration.
I might instead be the frustrated mom. The annoyed mom. The “next thing” mom. But she died eight years ago and is not worthy of resurrection.
Thank you for giving me all of you. I will try harder to give you all of me. Without fear. Without worry. Without tests or trials.
Speaking of trials, you know all that stuff I make you do, all those doctors, those hospitals? Eight years of infusions and six years of hospital beds? Those things that make you cry, and rail, and scream? Sometimes I fear that I’m doing that selfishly for me. So that I can have you longer.
He is a good God indeed.
I often feel completely at peace with meeting him sooner rather than later. If you could choose, would you make the same choices I’m making for you? Or would you say, “That’s enough now Mommy, I’m tired”?
I hope I’m making the right decisions for you. I hope that someday when you’re whole and healed, on the better side of heaven, you’ll be okay with my choices. My selfishness to save you for a time.
If someday you meet our Jesus first, I hope that you’ll tell him my mommy loved me the best way she knew how. She worried it wasn’t perfect. She knew it wasn’t enough to save me. But it was good. And I loved her.
For the love of a Savior and the laughter of a little boy,
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Notes from a Dragon Mom by Emily Rapp (New York Times)
Last modified: April 12, 2017