Editor’s note: This post was written in the wee small hours of the night, listening to Jumby’s sick ragged breath. I wasn’t going to post it, because it is raw and scattered, but I made a promise to myself and my children that this blog be a record of the good, the bad, and the ugly. Feel free to skip it if you are looking for something light and fluffy because that isn’t on today’s menu.

There are moments, no, days really, when I feel wholly unprepared for this mothering gig.

Today is one of those days. It has in fact, been an entire week of these days.

When Bug was alive, I was younger and infinitely more naive. I didn’t or couldn’t comprehend the enormity of the task I faced, raising a disabled child. Fric and Frac weren’t hurdling towards independence with an alarming alacrity and my husband still crawled into bed with me every night.

Three and a half years later and it feels like I’ve just blinked and the world has spun into something I hardly recognize. Suddenly I am alone most days and almost every night, with no husband to talk with, or to share the burden of child rearing with. Grief spun it’s magic on Boo as well and his life – our lives- went in a direction I could have never had foreseen.

My husband, sweet Boo, finds peace stretching his intellect in a job that takes him away from us for more time than any of us care for.

Fric and Frac bounce towards adulthood with every breath they inhale, eager to shed their childlike skins and stretch their boundaries of independence as far as the elastic of youth will let them.

And I found Jumby, sweet Jumby who is everything I hoped for and inspires my heart to grow Grinch-like, with every laugh, every cuddle he awards us with.

But in the background of this new life I’ve worked so hard to build is a shadow of angel wings, hovering over my head, reminding me of how fragile all of this, this life around me, really is.

My naivete has been stripped away leaving me struggling with the hard truth that at any moment life can change and the magic of these moments I wrap myself in can swiftly turn to dusty memories as I once more swim in the quagmire of grief.

It is hard to admit and it shames me to say it, but I’m scared.

I’m scared of what the future holds for my son, my forever boy, the child brought to me by fate and luck and determination. Jumby’s battle for life has been hard fought and too often he walks the precipice of death for my comfort.

I am imminently aware of how quickly his life (and mine) can go sideways with one infection, one bad swallow, one breath.

With Shale I knew this too. But it wasn’t a reality, it was a concept floating at the peripheral of my intellect. Surely he could die, I’d think to myself, but so could any of us. You never know when a bus is going to come out of nowhere and mow you down.

I understood his body was wrong, built differently and more fragile than his siblings while he was waiting to be delivered from the harness of my uterus. I knew Shale was medically fragile but he was strong. Resilient. Until that very moment when he ceased to be.

My child’s death has brought with it a clarity of just how very real death can be, and I look at Jumby and I worry. I worry that I will make a mistake, not notice his resiliency slipping and I will lose the boy I never thought I could love this much until I held him in my arms.

I worry for my older children and the scars they now sport through no fault of their own. I wonder who they would have turned out to be had they not had to bury their little brother at ages eight and nine. I wonder if my grief has added more crisscross scars across their hearts.

They laugh at me when I question them, gently prodding at them to reveal their feelings. They kiss me on my forehead like I’m a dotering old woman and squeeze my hand while assuring me they are fine, they will be fine, they have survived. But it is then that it strikes me, they have survived.

They’re children. And they are survivors. The only thing children should ever have to survive is a fruity old aunt with bad breath pinching their cheeks too hard and the teen aged scars from middle school.

Yet my children, all of my children have survived tragedy.

Fric and Frac and Jumby, enduring perhaps the worst tragedy of all.

This scares me and I wonder if I’m the mother I can be, the mother I should be to these three precious gifts I have been blessed with.

I’m so scared I’m gonna screw it all up.

While other parents dream of empty nests and weddings and graduations, when I close my eyes each night I dream of just one thing:

Having another day with each of them.