The Anniversaries We Don’t Want to Celebrate

Haley has been having a rough time. It’s no secret. Yesterday she was too tired to make it through the day at school. So we declared today a day off from school and started her morning with a (Low Glycemic Index Diet therapy approved) cupcake with a candle and sang Happy Wednesday.

But in reality today wasn’t just any Wednesday. It’s the anniversary of the day she was admitted last year to MGH for uncontrollable seizures. I remember clearly how devastated and afraid I was like it was yesterday. I was afraid because we had been in this same position 2 years prior with disastrous results that culminated in a 14 day coma and severe regressions. And we knew that Haley, even a year ago was out of options. We were lobbying our Dr’s hard for medical marijuana but with the program in limbo there was no access. A year later we are in exactly the same position. The lack of progress in the implementation of this program, the fact that no one in this state has shown any urgency or compassion for patients infuriates me. And Haley continues to suffer daily because of it.

If Haley’s seizures continue to escalate and she needs to be admitted again but without options left, where does that leave us? I’m afraid we may find out.

We all have anniversaries, dates, seared in our minds of events that we don’t want to celebrate. First seizure, hospitalizations, treatments, surgeries, ambulance rides, long seizures, intubations, sedations, tests. I knew this anniversary was coming. I thought I was prepared, but seeing the statuses and photos in my TimeHop app this morning reminded me that even when we prepare, we cannot predict how we will feel when these anniversaries come.

So this is an anniversary that we don’t want to celebrate. Instead we will light a candle and sing. Happy Wednesday everyone.

In the presence of greatness

Social Media has become a powerful tool. Particularly for parents of special needs children. There is a sense of community and connection that is unprecedented.

Throughout the past few years I have had the pleasure of meeting in person many of the families and activists fighting to change an inherently unjust system and save our children along the way.

These meetings have filled my heart and fueled me and served to strengthen at my core my resolve to be part of this change. I have sat, stood and lunched with greatness. I have shared both tears and laughter as we shared in our grief and our successes. Some of which would never be celebrated by someone who didn’t “get” it. Like the significance of your child allowing you to hold her hand. Or walk with only that assistance.

Some of these people have become the people I now count among my closest friends. They are my village. More importantly they are Haley’s village. We inspire one another to do better, to be better, to fight harder, to expose more of our journey and our pain.

Grateful doesn’t begin to account for how I feel for these people who were once strangers just traveling a parallel path. As one of them wisely told me “Fate is seldom wrong”. Fate has brought us all together and together we will do better than we could have without one another.

To my friends, to my village, to the ones I’ve been blessed to meet and the ones I haven’t yet, thank you. Thank you for being on this journey with us. With all of it’s ups and downs, hills and valleys (that often happen in a single day, sometimes a single hour). Thank you for not just bearing witness to our pain but sharing in it. Sharing yours when you think it’s needed. And celebrating the successes together.

Thank you for the poignant moments and the humorous ones. For supporting me when I couldn’t support myself. For caring so intensely about a little girl and her struggle to survive in a world that seems intent on making that more difficult.

Thank you to the families that have bared their journeys. That have shared their most vulnerable moments in an effort to show others they are not alone.

Thank you to the parents and friends of Haley’s who help her feel like just another kid by including her when it would be easier not to. For teaching your children that different isn’t scary. That compassion and empathy matter.

And thank you to the activists who work too hard for too little reward. But use an image of a little 7 year old girl advocating for herself as fuel to drive a little further today than we did yesterday.

One love to you all. Our village. Greatness lives in each and every one of you and I am humbled and honored that you share it with my family.

Down the rabbit hole

On the evening of Haley’s first seizure a giant gaping hole opened up around me. At first I thought I was standing on the precipice looking down, but at the moment of her diagnosis, sheltered in what are supposed to be comforting words “seizure disorder”, I fell headfirst into the abyss. I didn’t fall far though, because I immersed myself in online support groups, and epilepsy community and their support pulled me up.

When Haley failed to respond to one pharmaceutical, and then another and quickly a third and fourth that diagnosis was altered to medically refractory epilepsy. I fell a little further down the hole. Not so far that I couldn’t start the climb out, but just far enough that I couldn’t see over the top. And so I began to seek out others with similar experiences. Ones who could hold my hand and we could take turns pulling one another up.

When Haley’s language delays began and EEG confirmed near constant seizure activity during sleep her diagnosis was amended again, Landau Kleffner syndrome variant. I fell a little further. But I gained a whole new set of supportive people who were living parallel realities. And it helped to block the fall.

When genetic testing revealed a never before documented mutation in a sodium channel gene I fell hard. Confirmation that my baby was never going to outgrow this knocked the wind out of me on the way down. And while Haley’s diagnosis was amended to Dravet like, it couldn’t be called Dravet so I wasn’t sure if I could find the support I needed to pull me up enough to catch my breath. Luckily the community is a generous one and we have found a home there and it helped me find a foothold and crawl a little way back up.

When we realized that Haley at age 5 had never been to the bathroom alone or played Barbies in her bedroom by herself, we decided to pursue a service dog. The community we have found amongst other service dog owners, trainers and supporters boosted me to where I thought I could see the path out.

And then we were told that Haley was out of pharmaceutical options, there was nothing left to try except a risky invasive surgery with best case scenario being a 50% reduction in seizures. With Haley averaging 3-10 seizures daily, that still left her with daily seizures and no quality of life improvement, plus a serious risk of loss of speech and motor function. I fell hard and fast. And I stopped even trying to claw my way back out. I just accepted life at the bottom of the rabbit hole.

And then I discovered medical marijuana and its potential anticonvulsant effects. When my state overwhelmingly voted to legalize it I found a foothold and crawled as fast as I could toward the top. Only to be knocked down over and over again as the state lagged behind in its implementation, as the lack of available strains became clear, and Haley’s seizures increased and cognition declined. But I found enough support to at least motivate me to keep climbing. For 2 years trying to access this treatment for my daughter I have climbed and fallen, brushed myself off, and started the climb again.

I have found a community of activists, advocates (is there really a difference?), other families, other patients and supporters. And I have never felt so supported. I have gained my footing, and I am climbing out with help from all of these communities of supporters. And sure, I have days, minutes, where I fall down, sometimes it feels like I’ve hit bottom again, but I’m climbing faster back up. And I am learning to extend my hand and reach for those behind me so I can return the favor.

So wherever you are in your journey know that however far down the rabbit hole you are there is always a hand waiting to grasp yours if you just reach out…With the help of cannabis and some amazing people, the top is in reach. (even in Massachusetts)

P.S.-See you Tuesday 10/14 at the protest! DPH building in Boston!! If you need a boost I promise you’ll find one among the community there.

Be the change…See you on 10/14

I had another whole post worked out in my mind, indeed even started typing it up. But this nagging thought wont let me post it because I have something more urgent to say.

I try to live by the saying- “Be the change you wish to see in the world”. I love that motto. Love the premise that if something is wrong with our world, our country, our state, our healthcare system, our consumerism, that we have the power to change it. But we cant, I cant, do it alone.

Recently here in MA the workers and customers of Market Basket took a stand. Together they boycotted a favored grocery store and went out of their way to picket, drive longer, spend more, in the interest of the greater good. One worker, one customer could not have made that impact, but when we all took a stand together it was our togetherness that mattered.

On Tues 10/14 at 11 am there is a direct action protest planned in front of the Department of Public Health building (250 Washington St, Boston MA). This protest is a chance to stand together and say that the patients that have been left without access for 2 YEARS will not stand for it anymore. Their rights are being violated, their suffering is being prolonged and officials have yet to respond to previous calls of action with any urgency or empathy for the patients they are denying.

There is no doubt about it, Haley is suffering without access to medical marijuana. She has endured more than 90,000 seizures just since the day medical marijuana was voted legal here in MA. She has no pharmaceutical options left, she has exhausted every single one. The state has accepted more than 7 million dollars in fees from dispensary applicants and yet there is not a dispensary open. There isn’t even a way to register my daughter as a legally recognized patient with the DPH.

But it’s not just Haley who is suffering. It’s the 8500 other children in MA that the DPH estimates have uncontrollable seizures. It’s the patients with chronic pain, TBI’s, PTSD, fibromyalgia, arthritis, MS, ALS, migraines, lyme, alzheimers and so many other conditions that can be treated with medical cannabis. It’s the 2,000 people that are estimated to be legal medical cannabis patients here in MA that have nowhere to access consistent, lab tested medicine.

I NEED YOU. I need your help. I need you to respond to this call to action in record numbers.Take the morning off, get a sitter. I can’t save my daughter alone. It will take more than my voice, it will take yours. To sit back and feel empathy isn’t enough anymore. For 2 years we have waited for this process to unfold. We can’t wait any longer. Lives are being lost.

Please, please come and help us help each other. I don’t want to grieve my daughter, I just want to save her.

Be the change you wish to see in the world.

The Elephant in the Room

I watch Haley. Alert and anticipating. Ready to spring into action at any moment. That intensity isn’t lessened by the fact that she went 10 hours seizure free. That tension wouldn’t be lessened if she went 10 months seizure free. That expectation, that worry, that awareness that a seizure could strike any second, is prevalent in my mind. Always. At any given moment.

When I make a grocery list. When I weigh whether it’s safe enough to drive 10 minutes to the larger grocery store or whether I should stay in town. When I work. When I visit a friend. Even in the rare moments that I take time for me. It’s always there. Niggling, nagging, present.

It is the elephant in the room. Those seizures that might occur at any given second. The seizures that are unpredictable and relentless. Those seizures that steal pieces of my baby girl one minute at a time. Even when she’s not seizing epilepsy is stealing her life from us. The caution, the worry, the fear. The seizures that don’t happen but could.

The side effects of the 17 medications that she has tried in various combinations have taken their toll. The side effects we were never fully informed of or that were brushed off as rare or necessary risk. The question of whether the pharmaceuticals have done more damage than the seizures is the elephant in the room. Unanswerable. But the question hangs there, persistent in my mind.

The words cannabis, marijuana, pot, weed. Whatever you call it. I call it medicine. I call it hope. I call it our last chance. But every conversation where we skirt around it, where we call it cbd, where we don’t speak openly about the government patent on its neuro-protective properties, where we don’t admit that we are victims of decades of manipulation and lies, where we don’t acknowledge that it’s just a plant makes it another elephant in the room.

SUDEP…and the 50,000 seizure related deaths that occur in the US every year. The fear the grips my heart any morning I awake before my daughter. The anger and fear that coils in my stomach and throat, that wraps around my lungs and makes me unable to breathe through those moments. The acknowledgement that my child is at high risk of becoming a statistic is an elephant in the room.

The moments we lost, the memories we didn’t get to make, the hovering question of who would Haley be if she had access to cannabis from the beginning. Who will she become if she could get access to it now? I hope we get the chance to find out. I hope we leave behind the elephant in every room and learn to live. Cannabis gives us hope that someday we might…

I am a Mom

I am a Mom. For over half of my life now it’s how I’ve identified myself. But something changed after my youngest daughter was born. I suddenly entered the foreign world of being a special needs mom. Suddenly I went from pshht, I got this Mom thing down, to a foreign country filled with therapists, evaluations, neurologists, IEP meetings, attorneys, advocates and community.

I am a Mom. Above all else. It transcends everything else I might be and that title defines me unequivocally. And for 5 years now I have been a special needs Mom. An epilepsy Mom. Epilepsy invaded our lives with dramatic flair on 9/11/09 leaving my otherwise healthy 2 year old crumpled, unresponsive and blue. That was my initiation.

I am a Mom. I cook and clean and work and wipe noses and help with homework and taxi the kids around. I also hug and listen and love my children with a ferocity I didn’t believe myself capable of.

I am a Mom. I am fighting for my child’s right to try a medicine that could be her miracle. I am fighting for the opportunity for my daughter to be healthy. I am fighting for options when the medical community has left us without any. I am driven by love and fear equally. Fear that I may lose my daughter before she gets this chance. Fear that it may not work. Fear that we may never get the opportunity to meet her beneath the haze of pharmaceuticals. Love of her soft cheek snuggled up for a story. Love of her funny quips and imagination. Love of her very existence.

I am a Mom. But I have become an activist. Fighting to end cannabis prohibition for all patients in need and for adults who believe that cannabis is a safer alternative to alcohol.

I am a Mom. Just trying to save her daughter.