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.
This week on the playground, as shouts of laughter rang out around her, my daughter was hurt. Not anything as fixable as a broken bone. But hurt in that invisible, unfixable way called feelings. Another child called her “Epilepsy”. It was the first time that word was used against her. I’ll never forget it and I don’t think she will either. It will live in my memory as the day someone tried to define her by her diagnosis, to hurt her with it, but my girl is a fighter. Epilepsy hurts her every day, more than that child hurling that word. What really defines her is the resilience, bravery and beautiful soul that has manifested from that diagnosis. The way that she has risen above it. The way that she is MORE than epilepsy. She is Haley.
Until her seizures began at age 2 Haley met all of her milestones and was a perfectly developing infant and toddler. When her seizures did begin they came fast and furious and we jumped nearly immediately to drugs known to cause cognitive impairment. For a few months though they were well controlled and I was hopeful and naive about the effects of the drugs. I was too busy being thankful for days without seizures and recovering from the shock of their entrance in our lives to ask the right questions. I just rode the current, trusting blindly that the physicians were doing the right thing for my daughter.
Within 6 months everything I thought was true was challenged. Haley began seizing more frequently, they added more drugs and more until I didn’t recognize the half lidded dopey girl who couldn’t stand without assistance. Haley had regressed in nearly every area. Her speech was slow and slurred, her movements were jerky and purposeless, her eyes never opened more than half mast and I walked around with my broken heart beating.
Then came the hospitalization that almost took her life, the coma that she never fully recovered from, and the realization that I couldn’t leave important decisions about my child’s care to people who didn’t know her even if they wore a white coat and had letters after their name.
It took Haley over a year to gain back skills that the coma robbed from her. But how can I regret doing what needed to be done to save her life? Even if it cost her the life she knew. I know now that we had other things we could have and should have tried first but in the terrifying position of people telling you your child could die right now-intubation kits and PICU transfers and your child’s life hanging in the balance it is so damn hard to know what the right thing to do is. But months of intense rehab and an integrated preschool program with additional services helped her to regain those lost skills. We weaned the worst of the drugs and focused on “catching her up to her peers”.
For a time I thought this might be possible. By the second year of pre-k Haley was not visibly behind her peers in academic or social development. She was struggling with some mild language, specifically word retrieval and also some physical delays, but if you didn’t know to look for issues she just seemed like a precocious, social, happy preschooler.
Once we hit kindergarten Haley spent 3 weeks hospitalized for excessive seizures. Enter more drug combos, that never-ending cycle of titrating up, and weaning off. The gap between Haley and her peers became wider. In first grade she tested at late pre k to early K in all assessments, in 2nd grade she continued to test at a K level. Now in 3rd grade she still tests at late K-1st grade level in all areas and she spends more than 1/2 of her school day in small group and 1:1 instruction and is accompanied at all times at school by a 1:1 nurse. Haley is delayed-academically, socially, physically. But she is vibrant and friendly and witty and observant and so incredibly kind.
Haley’s delays are considered “mild” despite her being several years behind her peers. She engages appropriately with her peers and has many friends, is in fact one of the friendliest girls I know. Wherever we go from a restaurant to the grocery store Haley collects friends like most people collect cat hair.
Every Tuesday is Haley’s day to “share” something during morning meeting at school. This week she took a purple ribbon pin and told her class about how November is epilepsy awareness month. She talked to them about epilepsy and seizures and herself. She courageously explained how seizures make some things harder for her and that she wishes she didn’t have them.
That afternoon at recess a boy in her class told Haley to just “shut up”. Haley told him that she was telling a grown up and proceeded to begin walking to the assistant principal when this boy, this child, hurled a word at her with the intent of hurting her feelings and making her feel poorly about herself…He called her “Epilepsy!”. Haley was upset and retired to the nurses office with a seizure and a request for me to come pick her up. So at noon on a Tuesday my heart broke with the knowledge that my little girl had her first experience of her courage being used against her. I held her close and rubbed her back as she cried and I seethed within at the sight of her feeling inferior and ashamed and hurt. I bit back my own tears and through the lump in my throat told her that epilepsy is not an insult even though he meant it as one. I told her that it was no different than him shouting brown eyes at her. Her eyes are something she has that are unique to her, but they are not all that she is. They do not make or break her. They simply are. And I think they are pretty darn beautiful.
That day, that moment will be burned in my memory as the day another child called my child epilepsy. Even though she did her best to teach and spread awareness about it, that will be the day that she learned that not everyone will be accepting of differences, that people will use your uniqueness against you even when you were vulnerable but brave enough to share about it. And while I am sorry, so incredibly sorry, that she had to learn that I also know that it is an inevitable lesson that will benefit her someday. It was also one of those rare moments of clarity…I saw an irony of special needs parenting in how grateful I am every day for the cognitive abilities that she does have, and the awareness that because of that she understood that the child was insulting her and was hurt. She has continued in the past 24 hours to bring the incident up repeatedly and express sadness about it.
So while I wish that I could go back and erase the hurt from my baby girls face, because she has experienced far too much pain in her short life, I will instead try to embrace this teaching moment. To teach her pride and love. To teach her that “Epilepsy” is not an insult. It is not bad. And I will never again utter the words “I hate epilepsy” because I never want her to perceive that I hate any part of her. And the next time someone shouts Epilepsy at her in a way that is meant to hurt her I hope she shouts back their eye color.
*Footnote: When I initially posted about this on my FB page, simply venting at seeing my child in pain, there were several responses that I deemed inappropriate. The child that hurt my child is still just a child, and I will not publish any comments that threaten or condemn him. I strongly assert that we do not respond to hurtful and intolerant behavior with hurtful intolerance. We continue to teach, to model and to mold the behavior that we desire from them. I hope that he learns as much from this incident as my child did. But my child is my first priority, and while I cannot protect her from these situations, I can do my damnedest to be her soft place to land.
Maybe it’s because I’m a writer that I know the power of words. I hope this is a reminder to everyone that words are powerful. They can be weapons or great sources of comfort. Choose yours wisely and talk to your children, not just about tolerating those who are difference, but about true acceptance. Offer words of love and understanding. Be the mirror and reflect what you want to see.
“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.
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.
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.
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.
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.
Can you fix it Daddy?- A guest post from a Dad’s perspective. Written by my husband.
Whether by choice, influence of society or just by the sheer fact that I am a handy fellow I am often posed with the question “Can you fix it Daddy?”
A simple question on the face of it. Glue this, bend that, reattach (insert random doll appendage here). In reality for a Dad it is a much deeper question. Being a Dad is more than just fixing toys. It means being caring, tough, loving, stern, thoughtful, funny, strong, all the time, and sometimes all at once. It means being a good role model in your thoughts and actions. A role model of how to love and treat your family and significant other. It means losing sleep and adding (or in my case losing) gray hairs when you realize you slipped up and didn’t have all the right answers. When you let your family feel pain or worry. When you failed to “fix it” whatever today’s “it” happened to be.
This is the daily struggle for a Dad. How to keep his family happy, healthy and provided for. How to balance demands from work, home and family, again all the time and sometimes all at once. You learn to be a master of multi-tasking, hoping that you’ve remembered everything only to realize that you forgot to grab bread and milk on the way home. You internally curse yourself and vow to try harder tomorrow.
A Dad’s work is never done. If you are like me and are a Dad to a special needs child the pain and struggle are always front and center. You quietly burn inside watching your child suffer relentless seizures. You feel you heart shatter when you watch their siblings cry and feel helpless. You feel like failure when you see sadness in your wife’s eyes. But these pains only strengthen your commitment to try harder, to stay strong, to love more. If we seem distant or quiet, we’re not. We’re thinking a thousand different things a thousand different ways. Ways to help, ways to love, ways to fix the troubles we face. When something needs fixing we want to be the one you turn to.
As a Dad to feel true joy you learn it must come from your family. It comes from seeing your children discover new talents. The school play, a band concert, or even a homemade volcano. It comes from watching them set and achieve their own goals. Joy comes from watching your spouse’s hobbies and talents take off. The light in your child’s eyes when you glued their favorite figurine. A family day at the beach filled with laughter and fun is the fuel that Dads run on. Every day you search for these moments. When you find them you grab onto them. Fiercely. Because you know there are some days that are just plain awful. You need to tap these memories to keep yourself moving and maintain a positive outlook for yourself and family.
We often get caught up in making things perfect. In reality when your child asks you to fix something the expectation is only that you are there to help. To lend a hand, an ear to listen, a shoulder to cry on. It doesn’t need to be made whole, or perfectly like new. They just want to know that their problem is important to you and that you are there for them. Which of course, as a Dad you always will be. “Can you fix it Daddy?” I hope so sweetheart. I hope so.
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.
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.
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.
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.