Tag Archives: Parenting

Cannabis, Epilepsy, Marijuana, Mom, Parenting, Seizures

Be the change…See you on 10/14

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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.

Cannabis, Epilepsy, Marijuana, Mom, Parenting, Seizures

The Elephant in the Room

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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…

Cannabis, Epilepsy, Marijuana, Parenting

I am a Mom

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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.

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Welcome

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Welcome to my blog! This is where I hope to chronicle my journey as a single special needs Mom. This is my little corner of the internet to share my life lessons and raw feelings sometimes in real time, sometimes upon reflection.

Either way grab a cup of coffee, expect it to be flavored with salty tears at some point, and let’s share this brutal, beautiful life.

Open hearts, open minds…