Love to live AND Live to love

Sometimes love hurts. Sometimes love really does NOT conquer all. But it sure makes the journey worth traveling. Even if that means blisters on our hearts from trying to hold on when something else in the universe is forcing us to let go.

Love. Oh love. That word that means so much and so little all at once. That feeling that cannot be justified or reasoned with or rationalized away. That just is. That can bloom in the single instant in the empty space between eyes that lock and souls that connect. Or that can fill your heart with the sight of 2 lines on a plastic stick. Love. It can free you and bind you and make you feel infinitely happy or crippled with despair. Love. That which is so revered and special even the pain of it is to be treasured.

Love. Change one little letter and it becomes live. Do we live to love or love to live? Does it matter as long as those we love live?

Recently my world turned on its axis with a loss in our epilepsy community. Sweet Harper Howard, the daughter of Penny and Dustin Howard, lost her battle with CDKL5. Ironically it wasn’t the seizures that we all fear that took her. Much of the life that she gracefully lived was because of love. The love of parents that turned to hemp oil despite criticism from both the cannabis community which views this as an inferior option and cannabis opponents. But love. That feeling that swirls like a storm when you watch your child make unprecedented progress can drown out all of the other noise. Penny and Dustin stayed committed to the product and path that helped Harper so much. But ultimately Harper couldn’t live on love and she gained her wings. She is free and able, escaping the confines of her earthly body. But I am selfish. I’d rather have her here. Alive and loved. And I’ll never forget the moment that I read Penny’s words that Harper had passed. My hand flew to my mouth literally dropping my phone as my other arm flung out seeking purchase on something. Anything. I was sitting down but I doubled over, my body bent, bowing, under the weight of anguish and despair. The world is a little more muted, colors a little less bright without that sassy, fiery girl. To read more about Harper and her amazing family you can go here: http://www.hope4harper.com/harper-went-to-heaven-january-08-2016/

But love has limits. It can’t conquer all. And it doesn’t heal. If it did none of the children I know would be bound by their diagnosis. But that doesn’t make it worthless. And just to feel it is an experience worth the pain and fear we endure because of it. Because love itself IS the gift of life. And I am thankful to experience love and life even if that means embracing the pain, and sometimes loss, it brings.

That saying…”‘Tis better to have loved and lost”… I couldn’t agree more.

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Thank you Harper for the reminder. You will LIVE on in the LOVE of many.

As for me. Well, everyday I seek out an awareness of those seemingly insignificant moments that make me love to live and undoubtedly I live to love. And will continue to risk the pain of loss to love with all that I’ve got. Fiercely and with abandon. Because we’re not promised tomorrow. Not even when you seem healthy. image

Why “You’re So Strong” Isn’t a Compliment

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?

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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.)

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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.

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An excerpt from the novel I tried to get lost in. 

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”.

 

FUCK your Purple Ribbon

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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.

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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.

 

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Not so Great Expectations

Haley is doing well so I must be too right?

I am made.
I am made. Take me as I am. 

“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.

Haley and I making the best of a tough morning. A tough morning now is still nothing like the tough mornings of a few months ago.
Haley and I making the best of a tough morning. A tough morning now is still nothing like the tough mornings of a few months ago.

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.

The Muzzle Comes Off

What a long strange year it’s been.

This morning my TimeHop and memories on FB prompted me to share photos of last year’s protest at the MA DPH and state house. I was confronted by images and news stories from that day.

I stood at a podium and begged the state to implement a workable medical marijuana program. A program that voters had passed more than 2 years prior but that was still in limbo. I begged for my daughter’s life. I begged for access to the medicine that I believed could be her miracle. I say all the time that cannabis is medicine, I believe that wholeheartedly. But even more than that I say that cannabis represents hope. Hope for those that the medical community has shrugged at and written off. Hope for the hopeless.

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What I couldn’t say that day because we were banned from talking about it is that Haley was on CBD. She was enrolled in the Epidiolex trial through MGH in partnership with a pharmaceutical company that is testing a version of cannabis that contains only cbd. What I was muzzled from saying for over the year that we were enrolled in the study was that Haley failed Epidiolex. She failed it miserably.

Sure. You can find a few quotes, a Huffington Post Live chat and even a Boston Globe article where I dance around her failure. I focus on the fact that we saw cognitive gains even without seizure control. But every time I publicly discussed Haley’s failure of Epidiolex I would receive a letter from GW/MGH advising me that we were not supposed to publicly disclose our results. But it is clear that our participation agreement for the study has no NDA. And there are many families having success on this form of CBD publicly sharing that success without these undertone of threats. In fact GW Pharma released their own data at the AES conference showing that 50% of study participants saw a reduction in seizures of 50% or more. It stands to reason then that 50% are not. Why censor that class of patients while releasing your own data and allowing supportive propaganda?

As the study and year went on Haley’s seizures continued to escalate. She no longer made cognitive gains but stalled where she was- this was STILL an improvement from the regression we had seen prior to CBD treatment. As the school year wound down and nearly a year into the study Haley was in a bad place. Maxed out on the highest allowable dose of CBD, cognitive regression to the point that she was resorting to gestures and signs because her speech aphasia was so severe and she was averaging 30-50 convulsive seizures daily. She had lost 10% of her body weight and was listless and weak. We made the call to drop the study.

Haley napping away a beautiful summer day. Unable to enjoy it because of the seizures assaulting her relentlessly.
Haley napping away a beautiful summer day. Unable to enjoy it because of the seizures assaulting her relentlessly.

As we began weaning the Epidiolex we tried a new pharmaceutical Fycompa. It carries with it a black box warning for violent and psychotic thoughts and behavior. Initially Haley was irritable but tolerable. As we increased the dose she became riddled with panic attacks and tantrums. And still seizing. We weaned it rapidly. Another failure.

After failing so many pharmaceuticals and VNS not working yet and with the heavy despair of failing CBD weighing on me I thought this might be it. This might be the moment that I have to accept that this is our life. Her life. I wallowed in that heaviness testing the weight of it and drowning in my own despair and failure. But. There was one last pharmaceutical to try. A new one called Aptiom. It is technically contraindicated in Haley’s type of epilepsy but Haley is what our doctor kindly calls a triangle peg, too rare to even be a square. So together with her epileptologist we formulated a conservative dosing titration schedule. When 2 weeks in we saw a 25% reduction in seizures I thought it might be a fluke. When 4 weeks in we saw a 50% reduction I was consumed with fear that this was a honeymoon. 6 weeks in Haley had seen a 90% reduction in seizures, no major side effects and a cognitive awakening that defies all odds I was stunned. In disbelief. But still wary that it may be a honeymoon phase.

It has now been 3 months. Haley still has rough days but we are forging ahead with the same determination as always. She is wittier than I ever imagined and so vibrantly discovering the world that was previously just passing her by. I love watching her notice details and make connections that she has missed for years. She is not seizure free. She is still seizing every day. It is still success.

A brightness, a vibrance, a sass that has been dulled far too long.
A brightness, a vibrance, a sass that has been dulled far too long.

For so long I’ve been anxious and afraid to reveal our experience in the study. Afraid that they would discharge her because I felt compelled to be honest that it didn’t work for her. But off the study drug and officially exited… the muzzle is off.

I am crippled with guilt that this current seizure control is coming from a pharmaceutical while being grateful that she has this period at all.

What I want to say most, the message I really want you to take away, is that Haley failed Epidiolex but she has NOT failed cannabis. There are too many ratios and cannabinoids and terpenes and combinations of them all to say that. But the success with Aptiom has given us a luxury we never had before- the luxury of making decisions that aren’t tinged with desperation and fear. So we are still pursuing Haley’s MMJ card and looking forward to trying additional cannabis products-Our next step will likely be THCA which is raw, cold extracted, and still not psychoactive. And while she is in a much better place than she has been in years, we still aim for better.

Cannabis is still hope for Haley.

Love and Loss

Love and loss

I see your magic Haley. Even when it's buried and hard to find. I see.
I see your magic Haley. Even when it’s buried and hard to find. I see.

When we talk about love and loss of a loved one we often think only of death.
What I, and many families like ours, endure is a different loss altogether. It’s the loss of the one you love even though they’re sitting on your lap. It’s day in and day out living with, loving fiercely, someone that you know is a shell of themselves.

Sleeping away a beautiful summer afternoon stolen by seizures yet again. A beautiful shell with a beautiful spirit hiding inside.
Sleeping away a beautiful summer afternoon stolen by seizures yet again. A beautiful shell with a beautiful spirit hiding inside.

There are variations of this in so many households. People who are shells because of depression or self loathing or addiction or in our case a combination of seizures and legal FDA approved drugs.

Haley is a sweet, funny, loving girl. She’s the first one to comfort a friend who is hurt or sad. I marvel at her resilience and strength both physical (not even leaving the classroom after a seizure but carrying on through the fog) and emotional (battling the constant balance between carefree childhood and maintaining safety). But Haley is not really Haley. Not quite the same vibrant, mischievous girl she was as a toddler. Occasionally I get a glimpse of clarity and sparkle in her eyes and it literally takes my breath away this girl she could be. The vast potential I see. Full of possibility and hope not realized.

Haley stopping to smell the flowers before I could appreciate how important those moments are. We had so little time together before the seizures and drugs invaded.
Haley stopping to smell the flowers before I could appreciate how important those moments are. We had so little time together before the seizures and drugs invaded.

And so it’s a different kind of loss. To hold your spirited child in your lap and be grieving who they could be all while loving who they are.

And that’s my goal as we proceed on this cannabis journey. To meet Haley. To help her find her inner sparkle, to hold her hand as she fights through the fog that is as much from the pharmaceuticals as the seizures.

There is a difference between expectation and hope. As we embark on a new, uncharted, path I have no expectations. None. But I cling to hope. White knuckled and desperate I cling.

And I said in my post about siblings that I see Emily. I see her struggle and her achievements, but above all I really SEE her.

Haley and Emily "before". Before seizures. Before seeing them didn't seem so hard. When it just came effortlessly.
Haley and Emily “before”. Before seizures. Before seeing them didn’t seem so hard. When it just came effortlessly.

I want Haley to know that I see her too. Glimpses of her fire and tenacity but also her wit and nurturing instinct. I will always look past the haze, past the fixed but unfocused gaze and into her heart where it matters. Where her spirit shines through despite the challenges and obstacles that seem intent on destroying it. I know you’re in there Haley. I see you too. And I will work feverishly to find more than glimpses.

Because it all comes down to love and loss. And I love you too much to lose you. I love you enough to find you.

No Small Things. Living Hard, Loving Harder.

There are no small things. No small moments.

I never forget that just being alive is a gift to be cherished and grateful for.
I never forget that just being alive is a gift to be cherished and grateful for.

Last week Haley was doing incredibly well. Through a full moon, and traveling, and changes in sleep schedule because of the holiday- all seizure triggers- she had nights where I could count her seizures in single digits. It’s been months since she’s averaged fewer than 20-40 seizures daily. That reprieve and the depth of gratitude that I felt for it was a reminder that every seizure she can avoid is a moment of her life that she didn’t miss out on. Even if it was just one, it was worth the time to pause to reflect and be grateful for that moment that she stole from epilepsy instead of epilepsy stealing it from her.

Stealing a moment from epilepsy.
Stealing a moment from epilepsy.

This life I am living, WE are living, has taught me the importance of taking nothing for granted. As defeated as I often feel and as heavy as the grief is that I carry, I still remember to stop and cherish the feeling of warmth as the sun hits my face. I revel in the green smell of a freshly mowed lawn. I work harder to take in all of those things around me that most people are too harried to notice. And I do it because I see daily how fragile life is, how tomorrow is never promised. I do it because Haley has taught me that this moment is the only one that matters and if I don’t acknowledge it and the beauty of it it will be gone and I may never get another one.

Joy. Unfiltered, undeserved, innocent. Joy.
Joy. Unfiltered, unreserved, innocent. Joy.

And even in the hard moments I try to stay fully present. It would be easier to disconnect and guard myself against the pain I feel when she cries out in fear, or when she convulses and can’t breathe, and the only words I can utter are desperate pleas to just breathe, please just breathe for Mama. But I can’t. I owe it to her to live those moments that she’s being robbed of, and to live them fully. So I let the tears fall. I let the pain and sadness engulf me in those moments, and I let it fuel me to fight harder for her.

In the hard times we cling to one another. Living hard but loving harder.
In the hard times we cling to one another. Living hard but loving harder.

And I turn to humor when I’m hurt. Sarcastic, gallows humor as a protective measure. Her nickname is McSeizy, cyanosis is Smurf-ism and it keeps that pain and sadness that engulfs me in those moments from engulfing my life. Because I see how important it is to live. One great life, one life full of love, laughter, warmth, risk, appreciating every single moment, because one life is all you get. And you never know when it’s just going to be over. Life is fleeting and fragile and I am reminded of that every day.

So I will consciously acknowledge and appreciate the things others miss. The rose petal softness of her cheek as she snuggles up next to me. The weight of her head on my shoulder as she rests on me after a seizure. The soft feeling of her breath as she breathes freely, a miracle in and of itself that I find myself grateful for, on my cheek like butterfly wings. The way that she gropes for my hand as she cries out in fear and the pressure of her grip as she convulses. The desperate way that she continues to cling to my hand when the seizure ends. The beauty of a seizure free summer afternoon at the beach. The way we dance in the frigid cold of the waves. The sound of genuine laughter escaping from her lips as she plays. The unfiltered joy in her face as she swings higher, unmindful of the dangers imminent if a seizure strikes. Sometimes some moments are worth the risk. Because without any we wouldn’t be living this life at all. We would merely exist here. Life is meant to be lived. Fully. Freely. Present in every moment. Open and raw with your heart on your sleeve. Live hard. Love harder. And don’t forget to stop and smell the flowers of a pretty green plant that is changing misconceptions and minds while saving lives.