All posts by seizinghope

One divorced Moms journey parenting a child with epilepsy and activism.

When you become your worst case scenario

What happens when you suddenly find yourself living the very situation that you were once grateful not to be in? When you look around and realize this is exactly what you once feared. This was at one time your worst case scenario. What do you do then?

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I happened upon this comment from 2010. Haley was averaging 1 seizure/month and I was just learning that there are people that have seizures daily despite available treatments.

I had no idea that would become us. I had no inkling that the bottom could and would drop out at any moment. I had no idea how many times this “mild” case of epilepsy would land us in life threatening, emergency situations begging for my daughter to breathe. Please just breathe. Begging for her life.

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Napping off a recent seizure cluster. Because even when you’re determined to give all that you’ve got, it’s important to refuel. Body and spirit. 

So I sat here, stunned into silence as I wondered what do I do now that I’ve become that person that I was grateful not to be? I was so grateful to have a child who despite her diagnosis of epilepsy was still living a full, happy childhood. She was developmentally on track and we were adding therapies just as a precaution against risk of delays. I naively thought that this condition would remain mostly dormant.

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And now 6 years later, coming off a scare where we were back to 50+ seizures daily for a few weeks, I don’t even know where to begin. So I guess I begin with saying that even though we are exactly where I was grateful not to be I have still found a way to be grateful for what we are. Even at her worst, at constant seizures, and coping with the harsh realities of a child that turns blue and the agitation from rescue meds and the need for constant supervision and vigilant attention to everything she does… “Is her eye twitching? Did she just jerk her arm? Was that a blank stare?” I am STILL grateful. Wholly, simply, completely. Because I have her. I know too many parents with empty arms that ache to hold their child, even through a seizure, if it meant that their child was still here. That’s not to say that I don’t have my breakdowns. I sure do. But I can’t live in them, there’s too much life to vigorously explore to dwell there. Seizing Hope, even when it’s hard.

So when I panic that we are bordering on feeding tube territory, and cognitive regression and losing skills like speech and she can’t walk steadily I will not get bogged down by fear and frustration. I mean, I will. But I won’t stay there. I will remember to be grateful. I will be grateful that I am strong enough to catch her as she collapses right now. As she grows older and bigger that may not always be the case. I will be grateful that despite the seizures she shows a tenacity and resolve and spirit that leaves me breathlessly in awe. I will be grateful for the friends and family who rally to support us. The ones who light the dark, and when they can’t be enough light they pull up a chair and will sit with me there in the dark until I’m capable. The ones who let me beat my fists against the wall and wail at the unfairness.

 

And I have learned something incredibly valuable. I have learned that when what you thought was your worst case scenario becomes your life you still get the chance to live it. And somehow when you get there there will be new things to fear, new lessons to learn and new joys to be grateful for.

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Haley, simply happy and excited that she lost a tooth, with no hesitation or care that the tooth was loose because of the clenching during so many recent seizures. Just grateful that the tooth fairy is coming.

Reflections

Reflections…because the most precious thing we can offer another person is the reminder that they are not alone. Even when they feel like they are. And in those moments, those reminders that we are not alone, is the secret place where hope resides. Not fickle and fleeting, but lasting and true.

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We walk hurriedly and excitedly through the Maine mall, more of a gallop really, Haley stopping to jump up and down every few feet. We are headed for the food court but more importantly we are headed for Rachel and Izabelle.

I strain my neck to the side, short as I am seeing through a crowd is no easy feat, worrying about whether I’ll recognize this dynamic duo that I know only from online photos and messages. Only from tears shared 2 states apart. My eyes lock on 2 stylish figures with adorable hats. The recognition is immediate. I crouch to point them out to Haley so she’ll know which way to head and we beeline for them!

Haley and Izabelle are both 9, both with uncontrollable seizures, both failed by pharmaceutical companies and both with Moms that would give the world for them. Hence this moment, this gift of giving them each a reflection of someone “like them”. Someone else “with seizures”.

Haley and I approach and I say her name like a question…Rachel? We embrace as the girls just look at each other. I am moved beyond words at the sight. They nearly instantly start pulling down their shirts to compare VNS scars. A mirror for one another of the pain and struggle that they both endure in place of childhood. And the emotion in Rachel’s eyes mirrors mine. This moment is a gift for all of us. Understanding, empathy, reflection. No words necessary. We are bound by all that we have seen and done. Bound by the countless hours of holding a seizing child. Bound by the nights full of sobs and helplessness. Bound by despair and grief but also the innocent, untainted, unfiltered joy that these girls bring to our lives.

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I have had other similar moments throughout this journey that has woven the fabric of our past 7 years. Seen this scenario unfold a few times now. It never loses its potency. It’s value. A reflection. A clasping of hands that “get it”, is a precious and rare gift. I hope to give and receive it many times.

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Nearly 2 years ago walking next to my husband, I carried Haley through the parking garage at MGH. We arrived hours early for our neurology appointment so that we had time to meet a family. Lisa, Lonnie and beautiful Maddie. Again, so many parallels to our stories. Connected by the intangible, brought together by fate. Another moment of being overcome by the blessing of these people in our lives. Another gift to give our girls and each other.

As Lonnie, Lisa, Artie and I tried to visit, my words pouring out clumsily, tripping over themselves with the relief of yes! I understand! Haley fired off questions about Maddie. What’s her favorite color? What does she like to eat? Does she really have “shesures” like me? I was transfixed by the way that Haley was drawn to Maddie, didn’t need words to communicate, she just swam in the pool of her beautiful blue eyes and read her heart, blowing bubbles for her, handing her toys and snacks and fussing over her when she seized. Their friendship and my friendship with Lisa has brought us both much comfort. Haley talks about Maddie often. Struck by her sassy personality and the fierce spirit she inherited honestly. And I could be leveled to my knees by the strength of my friendship with Lisa. A mirror in so many ways. My reflection. One that I don’t need to polish and clean because she sees the streaks and smudges of my heart.

During a hospital admission I sat in the playroom at the arts and crafts table. My eyes were only on Haley as she was seizing so often I couldn’t take them off of her for a second. Sure enough I saw that blank gaze and pulled her to my lap to keep her safe until it was over. With her in my lap my gaze wandered, expecting to find the usual looks of sympathy and horror. Instead I found understanding in eyes that met mine and a soft voice that asked “How old is she?” That gentle soul and voice belonged to Kristine, whom I would get to know over the next few days, as our daughters are just a year apart both have epilepsy.

Her daughter Delia captured my heart as she finagled her way around playing vivaciously despite being tethered by multiple tubes. She and Haley became fast friends too. Bonding in that invisible way over hide and seek and bowling.

I was sitting in the neuropsych waiting room while Haley underwent testing and I heard my name…Jill? I looked up and saw the kindest eyes. Stacy and her daughter Ashley. We were enrolled in the same study. Both of our girls were struggling still and we both lamented the lack of cannabis access and options. Haley sat across from Ashley while Ashley tried to eat her keto lunch (yet another reflection!) and Haley asked her excitedly “You have to eat safe food too?”

So when I sit in a doctors office for any one of the number of specialists that she is required to see, and I search the faces of other parents, I am not looking for sympathy. I am looking for a friend.

Finding even pieces of your journey in others is a heady, powerful, empowering thing. It’s like a safety net always out. I have met many warrior Moms that have understood the pain in my eyes and the circles underneath them. We share sleepless nights and hard decisions. I am grateful to have the opportunity to provide our children the same outlet.

Reflections. Mirrors. Seeing pieces of yourself in someone else. Broken in all of the same places. Knowing always that you are not alone.

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.