Monday, June 22, 2009

A Mid-Night Crisis

She had a big seizure. This, I know. Though I can't tell at first, as I'm making my nightly rounds to check on the children before I retire to bed. It looks like a normal scene when I peer into her room, but the sound of her labored breathing reaches my ears. My suspicions are confirmed as I see her recent convulsions have jammed her head in between the railings of her white cast iron daybed. I see the puddle of drool matting her hair to her face and watch her struggle deeply for air.

She is most definitely post-ictal. Her body a wet noodle. Semi-conscious and unresponsive, her head flops like a newborn when my husband lifts her into his lap to check on her odd breathing pattern. I am concerned she has aspirated on her own vomit again. This happened to her once before, at 20 months of age. It resulted in a 5 day hospital stay with a chest tube draining her lung.

We remove her scoliosis brace and change her positioning. Her respirations become normal. We change her sheets and gently set her down to bed, as I stroke her back reassuringly. Then, it happens. She completely flips out in a way that can only be described as a combination of a night terror and a psychotic break wrapped in a bad acid trip.

This has only happened once before and it is extremely frightening and deeply disturbing to watch. Tonight, it happens again and I taste the adrenalin in my mouth and feel my heart race in my chest. She is screaming non-stop, a "horror-film," blood curdling scream, and it appears as if she is hallucinating. She's petrified. She is shaking, shrieking, lashing out violently, trying to run but falling over and crashing into walls. She is disoriented. She is aggressive. We know from a similar episode months ago that she can potentially hurt herself in this state. Last time, our docile, sweet girl tried to flip over a glass-topped kitchen table and then almost hurled herself through the sliding patio doors. We know now that we need to keep her safe.

My husband all but tackles her and holds her tightly. She stares and screams at nothing. I stroke her hair, I try to make eye contact, I talk, I hold her hand, I caress her cheek. I try to sing to her and she smacks me in the face, knocking my glasses to the floor. She is kicking, clawing, screaming, trying to escape.

The freak out continues. She is not losing steam, but rather appears even more agitated and distressed. We do everything in our parent repertoire to calm her however I realize it is causing an opposite effect. She is relatively averse to physical touch and affection unless it is on her own terms and initiation. She certainly is averse to being held down under any circumstance. She's spitting mad and on sensory overload from all this physical contact. I feel helpless because this is all I'm programmed to do as a mother and she doesn't want it. She doesn't want ME. Once again, I'm at a loss. How do I mother her? How do I let her know I'm here, she's safe, and I love her?

There will come a time for every parent when what your child needs from you is not what you need to give. You want to give them your wisdom, your protection, your comfort. However they may want independence, freedom, and the ability to forge new relationships and make their own mistakes. Here with CB, though circumstances are far from the typical child-parent dynamic of "holding on/letting go," I'm still standing at the same impasse. I'm faced with doing what goes against my mothering instincts. So, I do the thing I cannot bear to do. When I speak, I say the thing I cannot bear to say, but it's the thing she needs the most.

"Let her go."

My husband releases her. I withdrawal my touch. Instantly, she is calm.

We let her sit. Slowly, we transition her to her room. She lays in bed, quietly. She looks spent and bedraggled. I want to say and do so much but instead, I sit on her floor across the room, in the dark. I sit far enough away, but where she can see me. I sit, resisting the urge to mother her in the way I'm hardwired.

I watch her until I'm sure she's drifted into the safety of sleep. Only then do I go over to kiss her goodnight and touch her hand. She opens her eyes half mast. I think she's reaching out to hold my hand and my heart leaps, but she's only pushing it away.

Maybe next time, I think to myself. Maybe next time you'll let me on the other side of your wall. You'll let me take care of you when you're hurt or scared. But even if you don't, even if I can't show you the way I love you with hugs and kisses and words that comfort, I will be there loving you. I will love you in whatever way you need me to. Even if it's not the way I would choose. Even if it feels empty and incomplete. Even if I must sit across the room instead of holding you. I will sit there until you are safe. I will sit there forever on the opposite side of this invisible wall. Not to wait for you to find me. Not to hope that I will reach you. Not to dream of the day the wall comes down. Just to sit and love you. Exactly as you are.


Smiling Mama said...

I can't imagine how hard that must be to go against every motherly instinct and to let go. Yet, it also seems that you are giving her what she seems to need most and are therefore being the best mother to her.

Claire said...

Ditto what Smiling Mama said. Thanks for sharing this with us...brutal. I wonder if Stephanie Keil can offer any insight into the "terrors". My heart's with you.

Queenbuv3 said...

Do you have Diastat for seizures lasting longer than 5 minutes? We almost had to use it when my son had a breakthrough seizure on July 4th last year.

Is her siezure medication not controlling the seizures?

I know how terrifying seeing your child have a siezure can be. All you can do is watch and keep them safe. My son vomits and turns blue and it's like watching him die.

Hope she is feeling better now.

Beth L. Gainer said...

I'm so sorry about how awful that night must've been. You and your husband are strong, courageous people.

The hardest thing to do, I'm sure, was to let go, but you both had the courage to do so.

Alicia (aka Dr. Mom) said...

@Queenbuv3 - yes, we sure do have a diastat kit and have only had to use it a few times - if the seizure goes over 4 minutes. we werent sure if that psychotic reaction she was having was a seizure or not... we thought about using the valium, but when we let go of her, she calmed down. Her meds work pretty well... she only has one seizure every 3-4 months or so. The longest she's gone seizure-free has been about 8 months. so, its pretty good :)

tiffrutherf said...

Your amazing and brave to "let go" heart is with you..

michelle said...

You KNOW her. You knew what she needed, even though it was hard and maybe counter-intuitive. You know her, and your love for her allows you to give her what she needs.

Jeve (aka John and Steve) said...

Wow. This was such a powerful post. Thank you for sharing your vulnerability. My heart goes out to you and your family during times like that.

Michelle O'Neil said...

This is such a beautiful and heartbreaking post.

I'm sorry you all have to go through this.

Beth L. Gainer said...

By the way, I recommended your Welcome to My Planet blog on my blog. You're an awesome writer, and your postings are poignant.

Laughing Stars said...

Your writing is heart-wrenching and beautiful -- I love your posts. I am sorry for everything you went through that night. It must have been terrifying.

Laughing Stars said...

By the way, I linked to your post at my homeschooling/parenting blog. I hope that's O.K.

Anonymous said...

This made me cry and moved me in a way that few things do. I have been there with you sitting on the other side of the room, feeling helpless (and a little rejected) and loving her with all my heart. Thank you for this. I needed it today.

Jeannie said...

I am stunned. What a nightmare. Literally. I can't even imagine.

Holly Nappi Collins said...

Wow, I just read this and can very much relate. Although my daughter doesn't have seizures, I can relate to everything else.. it is something I ask myself a lot: am I being the best mother I can be to her, or how can I mother her, I wish she could show me the way..

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