I’m talking about it.

for the first couple years of zion’s life, he didn’t talk. when he did talk, he talked late, and only one word at a time. by the time two or three words were pieced together, his phrases had to do with simple needs or questions that rolled around in that lovely little head of his. In this stage, the beginning of the three words together stage, one night when I was doing the usual kissing/cuddling/singing bedtime routine I have always done with him and our other boys, he said a three word phrase. The song was over and I had kissed him, told him how much I loved him, and to have a good sleep. He responded,

“I wake up?”

It made me cold inside. How on earth did he think to ask this? What did he mean by it? In that moment he had asked the exact question I had been asking about him since the day he became our son, since the day his heart stopped, since the day he had his shunt placed. He continued to ask that question every single night for the next two years.

Here’s the deal. I have realized lately that I am coping with some really serious fears and my coping mechanisms aren’t quite doing the trick anymore. One of those has been silence, i.e. I don’t really talk about zion’s shunt and his brain and the possibility that there will be a morning when he just won’t wake up. I think I’ve told myself that this is like my cellulite – If I don’t look at myself in a full-length mirror naked, it isn’t there anymore! YAY! cue all of the mirrors in my home that are only navel and above. (my apologies to every guest who has ever stayed in my house and needed to know how their jeans look.)

Another coping mechanism has been the opposite – talking about it flippantly. Lately I have found myself telling zion’s story to a lot of strangers / new friends. Each time I’ve notice that, like any story you have to tell multiple times each year, I have gotten a bit scripted and numb about it. It usually starts with some question on their end about what his diagnosis “actually is” and leads to me following a script that goes something like,

“well, he was born three months early, suffered two bilateral brain bleeds of the most severe grade, those bleeds caused damage, cerebral palsy, and hydrocephalus, and then when he was three months old his heart stopped and he had to have a shunt placed. The shunt is a little mechanical gasket in his brain that drains out the excess fluid causing strain and pressure on his brain and it drains the fluid out through a little spaghetti sized tube under his skin, into his belly.”

At this point, the listener usually says something like, “wow! that’s amazing. so he’s fine now?”

These days I robotically recite the rest of the script that goes something like, “no. I wish he was fine now, but no. That shunt is what is keeping him alive, but all shunts eventually malfunction and fail. the longest they’ve ever seen one last is in a fifteen year old. His neurosurgeons have told us that when the shunt fails, his symptoms will most likely be similar to when he needed the surgery in the first place – his heart would most likely just stop. So we live every day with the reality that, if it fails in the middle of the night and we don’t see any warning signs, that’s it.”

“I wake up?”
I never knew exactly how to answer it. So I would cry (almost every night) and hide the tears welling up in my eyes and say, “of course you wake up, baby. of course you will.” I said it in blind faith that my deepest fears won’t become a reality, that God likes people who declared things in the Bible (Abraham promising Isaac the Lord would provide a ram). But let’s be honest, here. Some really gritty and awful shit goes down on God’s watch every single day. I can’t wrap my mind around the why of what he’s done in my life alone, not to mention the lives of those I love. So I would tell Zion he will wake up and then go cry myself to sleep. It was painful. It was deep. And there wasn’t anywhere easy to share that on instagram or any “I know how you feel”’s coming from my friends so I just shut it down. silence or script.

Zion’s four and a half now. And after four years of practice in my messed-up coping mechanisms, not looking at it and not talking about it to anyone, isn’t helping. Reciting a script like a list of facts, “the sky is blue, the grass is green, my son could die in his sleep tonight…” doesn’t make the fear go away either, doesn’t stop me from having nightmares or from falling asleep in Jeremy’s arms weeping because of how out of control we are and how desperately I want to not lose our little boy.

So on the days I feel able to, I pray and I meditate and I write and I hold him close and smell him and kiss his beautiful skin and I tell him I love him and I tell myself “be present here in this moment, ash..” every chance I get. I go to church and I tell myself that my hope isn’t in this life and that this longing for my son to be well will be met in heaven. But honestly, it’s hard in the day to day.

I guess that’s why I’m writing this.

I’m writing this because a handful of my close friends read this blog and I need that handful to know I’m struggling. I’m afraid. I’m sad. Motherhood is one of the core parts of my story, and mothering zion is one of the core parts of that core. It’s on my mind, it is filling my heart and my chest.

I’m also writing because I think talking about the fear and letting myself cry about it and swim in the brokenness of it all might be a new path to some form of acceptance and joy. I don’t know. Maybe not. But maybe. Until then, there’s a lot of this going on in my house. I still love that he will fall asleep on my chest, just like when he was three pounds. I love that I can count his breaths and feel him still with me, and that I get to look him right in those big bright eyes the moment he wakes up.

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Monica Calderin From one mother of a special needs child to another I want you to know I get it. That fear can be debilitating. It’s suffocating. Aside from Matt having autism he also has epilepsy. His seizures scare the hell out of me, especially since he always tends to have them at night after he has gone to bed. He is going to be 15 years old in 10 days and we still sleep with a baby tv monitor on our nightstand in hopes to catch any activity and run to be with him. It scares me to death to think of the seizures we didn’t catch until the next morning when he doesn’t want to wake up and the way he is behaving lets us know he had activity. As parents we feel completely out of control. Especially since he is non verbal, has no words at all, has never spoken. I wish he could tell us what he is feeling or if he feels when they are coming on. My greatest fear is that he will have one in the middle of the night and it will be a bad one and we wont be there to administer his emergency meds to stop it. Or I fear he will have one and fall and hit his head. A couple years back when John Travolta’s son died from a seizure (also had autism) it haunted me. Still does. I share this because my human mind and body lives these fears on the daily. Some days more than others.

Some random thoughts…

His plan is far greater than mine ever will be. Although I don’t FEEL this in my bones most days, this is where faith comes in. – Jeremiah 29:11

To walk by faith and not by sight may not be the easiest of things to do but we need to keep one foot in front of the other.

I hate when people tell me that God will not give us more than we can handle. Clearly they haven’t been in my home at 2a.m. while my son is convulsing on the bed that looks like a scene out of the Exorcist. I know they mean well though.

It’s hard. Really hard. But if we don’t fight the great fight for our children, who will? I’m cheering you on with your own mantra “Don’t Give Up”.

Praying for you Ash. for peace of mind. comfort. joy. strength. keep on…keeping on.

much loveMarch 31, 2016 – 10:17 am

Kristin Ashley. I love you. I love Zion. I am here for you and praying for you. I will walk the road with you and you are not alone in your fears and pain. your brave and beautiful heart make you such an incredible mother and your boys are so blessed to have you.December 29, 2015 – 3:04 am

Elizabeth koehler My dear friend, I could say the cliche things, but I won’t. Instead, I hope to offer to you, especially as we embark upon a new year, true friendship. I promise to listen to you, hurt with you and pray for you in our together times and in our apart times. I love you and that beautiful, strong mothering soul of yours. He is with us and will make us brave.December 18, 2015 – 8:58 pm

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