"I don't want to explode."

Rewind a few weeks and you'd find me fantasizing about life without Elias.

Relief more than despair filled the dark corners of my imaginary endings.

And before you write me off as a horrible parent, you must know that daydreaming about Elias's death has been part of my life since I first met him on a computer screen at 18 weeks and learned my body was trying to release him.

Incompetent cervix they called it.

And so I prepared for the worst as I lay in bed hoping for the best. Prepared to say goodbye to the beating heart inside me even as I willed him to live on, within, to emerge on my due date with my flood of expectations for a healthy child.

When my water broke at 24 weeks, and I felt him drop into my birth canal on the way to the hospital, I again thought about dying and living and all the red and green lights in between.

When I woke from an emergency c-section, and the doctor said: "He's alive, but I can't tell you he's going to survive," I prepared for his death as I prayed for his life.

Its just what you do as the parent of a child that can't breathe.

If a heart can stop once, it can stop again. And you never forget the feeling of not knowing. Not knowing if he'll ever open his eyes, not knowing if he'll still be there when you open yours.

Death weaves its own narrative into the fabric of your story until you grow comfortable playing with the dark edges of your imagination.

And you stop judging yourself for going there.

I remember a friend visiting me in the NICU when I stood vigil by Elias's isolette, she looked at his tiny body hooked up to all those machines and asked,  "Do you ever worry you are doing too much?"

The question haunted me for years.

Still does sometimes when, for a second, I imagine an alternative life. 

Those times when Elias tries to scratch my face off and screams like a hurt animal as I attempt to remove him from a situation, and I catch the eyes of someone witnessing one of his tantrums for the first time. Its later that night I might travel the rabbit hole to imaginary endings.

But here's the thing, and the reason I started writing tonight, heavy mood and all, Elias hasn't had a tantrum like that for over three weeks, right around the time we eliminated gluten from his diet.

He's also been getting dressed on his own in the mornings and putting on his pajamas at night without twenty prompts.

He's sitting on the toilet without resistance, trying.

And at school the other day, when asked to pick a goal for the third quarter, he chose, "I don't want to explode."

And those five words were like music from the mountaintops: I don't want to explode!

His goal eventually got written down as "I want to stay calm" but his initial word choice showed me that his freak-outs scare him too.

And not only does he not want to act that way, but he's able to reflect upon his actions.

God, what a gift.

I didn't know.

And maybe, just maybe, we will both continue to grow.

Comments

[Tabatha]

Wow, I really hope that going gluten-free continues to be a boon for you both! My daughter went gluten-free last summer for joint pain and has found it helpful enough that she sticks with it even though it's inconvenient. Some gluten-free dessert mixes are REALLY good -- we are lucky to be living in a time when gluten-free is well-known. My FIL has celiac and hasn't eaten gluten for 25 years. He had a hard time in the beginning. (Sorry to have gone on a GF tangent when I know you were talking about serious stuff like death...)

[Christy]

Oh, Tabatha no need to apologize I'm the one who went on the death tangent when I originally intended this post to be about all the positive changes I've observed since we went gluten-free with Elias. We are now at the point where we are suppose to give him some big helpings of gluten and observe his behavior to see if it makes a difference but I'm not even sure if we need to based on what I've noticed so far. But I guess it could be a coincidence...

I too have been gluten-free for over two years due to an allergic reaction (hives everywhere) and so this has made it easier to make the switch with Elias. I'll keep you all posted...

And I hope everyone knows I do want Elias here with us I just sometimes follow my mind where it goes. When he throws up I worry he is having a stroke, if he shudders it could be a seizure...the downside of an over-active imagination I guess.

[Toni]

You write so bravely! Sure hope the GF diet keeps working!

[Louise]

I was JUST this morning thinking about you, and imaging the future for Elias, wondering what changes were in the future... and reading this post has filled me with excitement for all of you. Way to go Elias!! Wow, "I don't want to explode" is so huge for him. And for your whole family. I'm rooting for this new development and the evolution it may foster! And I'm impressed, as always, with your willingness to bare your soul and dig deep into the dark places, where we all do go. (And if I were you I'd sure be reluctant to test this with a flood of gluten. After all, you've certainly earned a rest from the battles.)

[LisaY]

I work in jr high and so often hear from parents at IEP meetings about the "long way" they and their child have traveled. We read the old paperwork and about behaviors that are either no longer a problem or that we know how to head off or deal with effectively. We tell parents about their sweet, funny, smart kid who we enjoy so much and they say, "If you had known him back when..." I'm glad it seems now, along with your mind's attempts to rewrite the past (which we ALL do), it seems you are getting a glimpse of a rewritten future for Elias as well.

[Christy]

Thank you Toni, Louise, and Lisa! I do have more hope for the future than I had a few months ago when everything just seemed so impossibly hard. I love hearing about JR high kids who aren't as difficult as they once were b/c as strong as Elias is now at 10, I worry if he is still full-on raging as a teenager.

And yet the bad news is the day after I wrote this post he head-butted and hit the girl he likes the most at school so I felt like I jinxed it by writing about his improved behavior but with every two steps forward we take a step back, and I'll take that.

Thanks too for reassuring me that its ok to write about the dark places, and that we all go there, I sometimes have a moment of panic after I hit the publish button. Or the next morning when I wake up. But writing for me is cathartic and only when I am true to whatever thoughts are floating around inside.

[Noel Dennehy]

Oh Christy- you are such an incredible mother- never ever feel guilty about writing about the dark side of motherhood- OH how all of us old mothers wished we had had this tool when raising our children- we didn't have this release and I am so thankful for you that you do. On another note...I think it is your birthday tomorrow- I hope I have the date right- had your dad's wrong. Just wishing you lots and lots of love and support on your journey- I loved the blog about you thinking about living freer and writing more- you and Nick are fabulous parents and such wonderful partners!!!

[Kelly Osher]

I think all parents have the death thoughts, and fears. I remember when my son was in the ER for pneumonia I was thinking, "is this how it ends, I'm not ready for us to be done".
I have always wondered about your thoughts on all the decisions you have to make as a micro-preemie parent, and the eventual outcome. I have been a NICU nurse for over 16yrs and clearly remember the day my sister, Stacey S. called saying she had a friend who had just delivered a micro-preemie. She described Elias' condition, then asked my thoughts. I was not optimistic. Always wondered if you had the "what-if we...." thoughts.
Thank you for letting us have these peeks into real life as Elias continues to grow and thrive!

[Christy]

Kelly, thank you for sharing your thoughts from that time, I'm glad I didn't have the knowledge I now do then as there is something reassuring about not knowing...and thanks for continuing to follow our story.

Noel, yes you got the date right and it has been a really nice birthday long weekend!