I hurt… But I hope…
I hope… And I hurt…

Those statements sum me up. And I could add paragraphs of words that try to explain the coexistence of hurt and hope in me or justify how or why I feel that way or why it’s so damn important to acknowledge BOTH. But today it’s enough just to say that I hurt. But I hope. And I hope. But I hurt…

Catching sunbeams.

For months I couldn’t write. Not a word. I called it choking on words. I was really choking on grief. The grief remains but the words came unlocked. Well. Maybe not fully. But enough to try again.

Last weekend we spent the day at a lake. Surrounded by family and love and all of the offerings that being together on a lake bring. Swimming and laughing and splashing and fishing and fun. I snapped photos of cousins whose love transcends the time between visits in that way that only exists between cousins.

Going through those photos I found one that took my breath away. Instantaneously. A gasp at the beauty of my daughter with her hand outstretched. I showed it to her and asked what she was doing. She replied “Catching Sunbeams”. And my first thought was Oh how I hope you see your own radiance. The sunbeams that live within you. Because I do. My second thought was that’s a damn good analogy for special needs parenting. Maybe even parenting in general. Maybe even life.

Because…Aren’t we all just catching sunbeams? Grasping at intangibles? Trying to hold on to the light in our lives while lighting the darkness for those we love? For me as a Mom it’s holding onto the memories of the good times while wading through the bad. It’s appreciating the good days all while trying to hold the memories of the bad ones at bay. Fighting not to let them encroach too far. It’s seeing the light in my daughters eyes when they are happy. Sunbeam moments are fleeting. Clouds can move in or the night inevitably darkens the sky. And we feel the absence of their warmth and radiance. For me the key is remembering that the shadowy, cold, dark place is temporary too. There are more sunbeams around the corner. Stretch out your hands and heart and see how many you can catch too…

As special needs parents we think we know grief. We think that we are intimate with it on a daily basis. We think that it cannot surprise us anymore with its intensity and pain, and the vast chasm of loss. It can. It does. Every time.

We think we know grief. We grieve for every missed milestone and every experience. We grieve every birthday party invitation that they don’t get. We grieve the skills they fought so hard to achieve and lost overnight inexplicably. We grieve the childhood we thought we could provide. We grieve the loss of innocence and the distrust in their eyes as they look at you in surprise every time a needle is poked at them. We grieve the parent we thought we would be. We grieve the vacations we can’t take, and the hospital stays that replace them. We grieve the loss of friends as one by one they drop off unable to listen to your sadness anymore, unable to relate. We grieve the missed experiences and the lost moments. We grieve the before. Then we grieve the after as the after continually changes.

We think we know grief. Because we grieve when someone far away loses their fight. We grieve from a distance along with other parents whom we’ve never met who experience the imperceivable loss of a child. We grieve as a community.

We think we know grief. Until a child that you’ve held in your arms, the daughter of a friend, is the one that you’re grieving.

We think we know grief. Until a girl who snuggled up with you and shared her favorite blanket and special Froggy with you is the one that’s gone.

We think we know grief. Until you wake up and find your own daughters hair wet from tears you cried in your sleep.

We think we know grief. Until you hold your child and cannot find hope or gratefulness in your heart, only guilt. Only guilt that your friend miles away has vacant, aching arms. Only guilt that there are so many other mothers like her. Too many mothers.

We think we know grief. I hope I never know the unimaginable grief of an empty bedroom with a rapidly fading smell. I hope I never know the grief of my daughters voice left only as an echo. We fear grief.

We think we know grief. Until it has our head hanging over the toilet trying not to vomit from the shock of it.

We think we know grief. Until we are on our knees wailing with it. Sobbing.

We think we know grief. Until we are clinging to another Mom on a cold windy overpass greeting the body of a child on her final journey home. Asking each other unanswerable questions like why? how?

We think we know grief but every time we find it surprising us, ravaging us anew.

When you call me strong but I know that I am weak I only feel like it’s one more thing that I’m failing at. Because I’m supposed to be strong right? But why? Why is strength what we strive for? What if I would rather be real?

I touched on this in a previous post over a year ago but I don’t think I was ever able to convey how often I hear “You are so strong” and how deeply I resent those words. I am not strong. The me who walked around my house on Sunday heavy with sadness and grief, unwilling to get out of pajamas and trying to steep myself in a fantasy world of fiction (which by the way was Winter Solstice by Rosamunde Pilcher…it was a fantastic novel full of tidbits of wisdom and the age old, albeit faulty, lesson that love can conquer all.)

Some days I do a better job at feeling like I can conquer this beast. That even with the intrusion of daily seizures I can appreciate this life and live it to my fullest extent. Some days that feels like winning. And other days the terror and fear that she feels as the seizure approaches grips my raw and exposed heart and holds me by the throat reminding me that I am losing this battle. And then logic overcomes emotion and I realize that I’m “judging a fish by its ability to climb a tree”. That seizures have become my only yard stick for success. And I can’t even pinpoint when that happened. But somehow in the scheme of things other really important measuring tools like is she happy? Is she making progress? Does she laugh every day? Are her eyes clear? Are lost in the all encompassing question of did she seize today? The answer to that is yes. Has been yes for every single day except one in the past 3 years. The answer may always be yes. And I have to find a way to stop seeing yes as failure.

I worry that I’m not doing enough. I worry that I’m not doing the right things. I worry that I’m worrying too much. I worry that I’m worrying about the wrong things. I worry that I need to focus more on her. I worry that I’m hyper focused on her. I worry that she’s going to get hurt asserting her independence. I worry that she’s too dependent. I worry and I worry and I worry. And it leaves me feeling unsure, insecure, battered and beaten with pieces of me washed away and lost.

So. I am not strong. Even as you say it I know that I am weeping on the inside, even on the days that I paste on a smile. Even on the days that I pretend. My “Oh, thank you” IS sincere. Because I know that you think so. Even though I don’t. Can’t.

But you know what else? I don’t WANT to have to be strong. I’m not even sure that I want to pretend. I’d rather be real and say No, I’m not and that’s ok too. I want to send the message that it’s ok to not be strong. I especially don’t want my child to have to be strong. I don’t want her to forced to be a warrior. I want her to be a child! I want to give her a carefree childhood devoid of this constant worry and fear. I want to give her the kind of joy that can be taken for granted. I don’t want to be this broken person. I don’t want to measure success by a yard stick that guarantees failure.  I don’t know how to change that, but I’m trying. And in the meanwhile I’ll thank you for believing that I’m strong (even when I don’t want to hear it because I can’t believe it) while I drink coffee that is salty with my own tears about as often as she seizes. (Every damn day)

And I hope that reading this gives you the courage, next time you want to utter this phrase, to instead wrap an arm around the person and tell them “It’s ok not to be strong with me”.

Disclaimer: I am angry. And sad. And overwhelmed. And it’s ok if you disagree. I will not engage or defend my feelings. They are mine and I reserve the right to feel them.

November is epilepsy awareness month. The month when the epilepsy community posts daily pictures of fingernails painted purple and images of purple ribbons show up everywhere. They’re so pretty the way they stand out on your coat, fluttering softly in the autumn breeze. They are a beautiful symbol of…absolutely nothing. They trivialize the suffering and anguish and fear that epilepsy families live every day. They are a way to make others feel good in a way that is only a farce to me. If you want to spread awareness spread it in a way that accurately represents those that you purport to support. Spread it in a way that validates an honest representation what they go through instead of a way that is frankly just easier to see.

Within the past week just within the online epilepsy community that I connect with 2 children are dead. 2 families are grieving, gasping, begging for their children back. Somehow I don’t think that slapping a purple ribbon on those coffins would be anything more than a slap in the face for those families.

Epilepsy isn’t pretty. You can’t paste a pretty ribbon on and call that awareness. The only thing purple about epilepsy is the shade of my daughters face when she’s deprived of oxygen as air is forced from her diaphragm. And it’s not pretty. It’s scary as hell. Epilepsy is all colors. It’s the green of a plant that could save countless lives. It’s the green of my envy when I see a healthy child my daughters age. It’s the blue that tinges her lips and fingers as the seizure claims her. It’s the red of broken blood vessels in her eyes from seizing so hard. It’s the yellow bruises as they fade from black to purple to yellow from falling during yet another seizure. It’s the orange and blue and pink and white pills that we shovel down her throat everyday in a valiant but wasted effort to keep seizures at bay. Epilepsy is the black that you wear to your child’s funeral. It’s the pink of her rouged cheeks as she lies in her coffin. Epilepsy is the void of every missed moment in your life that seizures or fear from seizures stole. Epilepsy awareness is in the bravery of those who open their lives and share images of those moments. The hard ones. The vulnerable ones. The REAL ones.

Epilepsy is not just purple. And it’s definitely not pretty like a ribbon we put on it to make others feel more comfortable. Fuck your purple ribbon. I want a cure.

Haley is doing well so I must be too right?

“You must be getting so much more sleep!” “You must be so happy!” “You must be so much more productive!” – These from outside and even worse, the ones from myself, are the not so great expectations that keep me up at night.

Haley continues to do well, and I am grateful; God so incredibly grateful, but with that news comes all of these expectations. I know I am my own worst critic, I know many of them are self imposed, but those innocent “You must be” comments feel like criticism because I’m not anything that everyone thinks I “must be”.

I am so far from well rested that it actually feels like a foreign country that I’ll never visit. And happy? Well. I’m just as confused about that as you are.

For years my emotions have been tied to Haley’s seizures. One seizure (well ok, it was never just one seizure) could siphon happiness out of a day like a punctured balloon. But I have been so desperately attached to this idea that if we could just have a break from constant crisis mode I could actually have the luxury of happiness. Happy and grateful are not the same thing. I am gratefully unhappy.

That’s not to say that I have no joy either! I have Tuesday coffee dates with amazing friends, and hours in a dance studio passing on knowledge about something I love. I have moments every day (well, ok, most days)  of sheer bliss. I DO appreciate the small things like finding shapes in the clouds, and tasting that undeniable crisp freshness that seems to define fall in New England. So I am gratefully, joyfully unhappy. See why I’m so dang confused.

I used to be able to rant and cry and vent and people understood. I mean watching your child contort and gasp and stop breathing thousands of times in a few months will push you to the precipice of your own inner strength. It will weed out anything that isn’t necessary to life. Happy? Well, no one expects that from you. But watch your child emerge from her drugged and seizing shell of herself. Be amazed daily by her wit and humor and stubbornness (NO idea where she got that. None. At all.) Watch her discover new hobbies, new joys, discover HERSELF! And everyone expects you to suddenly just be happy. (Or at least you think they do so it’s pretty much the same thing) Like I can instantly forget where we were a few short months ago, where we could be any day. Haley might not have as many seizures but she still has epilepsy. She still has seizures every day. And I am happy for her relief. I AM. I am sincerely, gratefully, joyfully, happily unhappy. (What can I say? It’s complicated.)

Now, I still get overwhelmed with every day things. I pull up in the morning drop off lane late most days, I forget to send the permission form, and to RSVP, and my house is still a mess, and dinner is still thrown together. And for crying out loud I still am not getting enough sleep. Stop! with the sleep. But now it feels worse. No longer excusable or acceptable. Because she’s doing better so I should be too right? And that, THAT, is what it boils down to. Why aren’t I doing better?

And so I am living in this weird state of limbo. With all of these (not so) great expectations of myself, and all of these (real or just perceived!) expectations from others. So the next time I am bragging about Haley’s progress please, PLEASE, try not to tell me how I must be, and let me try to tell you how I am. I promise I don’t think there’s anything that you must be either, except perfectly imperfect, authentically, YOU.

Footnote- I’m not sure why this post felt exceptionally hard to share but it did. It felt particularly vulnerable. Like I just gave a speech and realized that I was in my underwear. But better too. Purged. Cathartic. Not pretty words wrapped in a tidy package with a neat little bow, because life isn’t a tidy, neat, pretty package.