Being A Mother of Kids Who Can Die: Facing Down Every Mother’s Greatest Fear & How You Can Be Kinda Guaranteed to Get What You Really Want for Mother’s Day

Maybe I would — or wouldn’t have — signed up to be the mother of children who could die at any minute.

Maybe it’s kinda every mother’s worst fear?

I mean, every mother has signed up for this, really — but there isn’t once that I don’t hug our Type 1 Diabetes boy goodnight and not think that there’s a 1 in 20 chance that he will die in his sleep.

“Well, hope I see you in the morning,” he always laughs and winks and I always have to remember to breathe. His arms are bruised and sore from the tyranny of insulin needles that keep him alive and here.

A few weeks ago, he was found non-responsive. A diabetic coma — severe hypoglycaemia that results in death — is the beast that daily tracks us, threatening to hunts us down and eat our prayers for lunch. I counted minutes to the ER.

The shadow of death is a strange friend: it wakes you to savouring life and every minute. Sometimes I find myself memorizing my children’s faces, the way their eyes look when they turn and catch the light, the way their laugh sounds down the hallway.

A mother memorizes her children to know more of grace by heart.

His baby sister, our littlest, has hypoplastic left heart syndrome, a literal half a heart, and heterodaxy, her heart being on the other side of her chest, and there’s no cure for any of this and all we can do is hope for a heart transplant someday and a bit more time. When I think about this, I forget to breathe.

When I tuck her in at night, I hold her the tightest as she has this kinda actual death grip around my neck, and she begs me, “Stay with me, I need you to stay with me.”

She feels like evening light in my arms.

I whisper it back to her every night:

“Stay with me. I just need you to stay with me.”

Stay breathing, stay dreaming, stay being you, stay in this circle of love, this circle of safe, that is ours — that’s all a mother needs, all a mother wants.

I need her to breathe so I can breathe — but you tell me, what happens — if something happens?

My mother-in-law buried her four-year-old and a 17-year-old within a handful of years. How does a mother bear it and still bear down and deliver hope? My own mama buried my sister, two years younger than me—- while she was holding my 3 week old baby sister in her arms.

Somehow a mother who breathed a child, a life, into the world, she breathes her way through loss, one breath after another, and a woman can breathe her way through anything. And I say “through” — because maybe — there is no other side to loss.

Maybe all the brave know no matter our story: We don’t cross from one side of heartbreak to the other side of heartbreak — maybe heartbreak just becomes the ocean that we almost drown in — and then becomes the waves that surround the island we drag up on.

And somedays the island is frighteningly small and all we see is rising ocean everywhere, threatening to sweep us away, and the waves of ache just keep coming. And then other days, the island is a refuge and we get lost a bit in the living, and we can see glimpses of life growing even here in the middle of our ocean. But the ocean is always there, the ocean never disappears, the ocean always remains at the edge of things, heartbreak always touching the shores of you.

Maybe there is no other side to heartbreak — only living on your island through the heartbreak, living with the heartbreak.

And the ocean becomes the friend who gently kisses you again and again, so that the dreams and love and all that was, always remain with you, never lost. And someday, you find yourself not fearing the ocean, but the ocean becomes a strange kind of refuge of its own — a way to remember.

I tell myself this, when I think of being a mother of children who can die any minute, like all the mothers living through all kinds of heartbreak. I tell myself that I will breathe through the ocean, that I can live on an island, that I can live surrounded by any ocean.

I tell myself now: Mothers don’t need flowers.

Mothers don’t need chocolates or take-out or a day out or dinner out.

We don’t need more glitz, more bling, more glamor, more things. And maybe it’s not so much about getting us what you can fit in a box, a shelf, a drawer, a wallet, a closet or a purse. Maybe it’s about giving us what can fit in our hearts forever. Maybe it’s more about giving us time. Because in the end what every single one of just really wants is more time.

Time to breathe, time for walks in the park on May afternoons and picking wild flowers from the ditches down some back country road. Time to kick a ball around, lay on the grass and watch the clouds make sky art, time to find a bucket of maple ripple ice cream and memorize all over again how your people laugh.

I never want to forget how we all look when we’re happy.

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What a mother truly wants — is for her kids to be truly happy. There isn’t a mother who needs any greater gift than her children being greatly happy.

And bottom line: All we really need from each other — is time to be with each other.

Because getting time
to love the people you love
makes you the luckiest.

Maybe…  Mother’s Day is less about being deeply loved and appreciated—and more about appreciating that we just get to deeply love these people.

Maybe every year needs one day to live wide-awake to celebrate that we get to call these people ours, that we get to be the one who gets seconds and minutes and hours and days and maybe even years — to witness the wonder of them.

For as long as they’re here.

When we know we only get so much time — all our sacrifices are made into gifts that we get.

When expectations shift from wanting to be loved — to being the luckiest to get to love — we can always expect to get what we want most: joy.

And when I hug the fleeting mirage of these kids, him towering over me, her little heart pounding next to mine, and they whisper: “I love you —”

How can I help but murmur: “I get everything I need when I get to love you.”

Stay awake, stay grateful — because in this moment, they get to stay — and I get to stay here loving them — what more could I ever need?

Maybe all I can hear is that singular heart beat of what all the mothers are trying to say to their people, the ones they get for only so long:

Getting to love you makes me the luckiest.
Getting to witness your brave gives me strength to bear whatever comes.
Getting to receive your grace makes me only want to give more.
And getting to be with you, ever, whenever, however, makes everything worth it — because you are worth everything.

We get the gift of this day to love our people — and what if we don’t get the wonder of another?

And there’s this ocean of grace, and us on this island of here, with this minute to love all of them.

And maybe —

Getting to love — is getting the best gift of all.

 

Maybe what we want most desperately — is relief for our unspoken broken, and — just to get the grace 

to stay and love.

Maybe what we want most — but don’t know how to quite find words for —

is healing for our unspoken broken, a gentle touch of hope for our heartbreak.

Maybe we want someone to be real, someone to sit with us so we know we aren’t alone.

Maybe we want someone to hand us some Brave for this island of now — to face down our greatest fears. 

Maybe we want someone to give us courage to dare to take The Broken Way… into the abundant life.

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