I just want to be her Mom

What I want to be: Her Mom. Just her Mom.

Holding her in my lap after a seizure at the beach. Just being her Mom.
Holding her in my lap after a seizure at the beach. Just being her Mom.

What I am:
I am the “holder downer” when the needle pierces her vein as she gets blood drawn. Again

I am the appointment scheduler for all of the myriad specialists.

I am the one that drives her toward the “owies”.

I am the tear wiper and the hand holder.

I am the one who tries, but fails, to keep the panic out of my voice as I reassure her when the seizure hits.

I am the one who calls the insurance company when they suddenly won’t approve the medication that she needs.

I am the one that propels her in to all of the therapy appointments and specialist appointments.

I am the one that evades the question “will it hurt?”

I am the one that lies next to her in a hospital bed when she’s literally tethered to the machines.

I am the one who puts my mouth on hers, not to kiss her good night the way a Mom should, but to breathe air into her lungs when her body can’t do it for itself.

I am the one who shoots a dirty look at the IV nurse who just missed for the fifth time.

I am the one who will hold my ground against a doctor who thinks he knows her after 5 minutes of shining a light in her eye and tapping her knees.

I am the one who can’t let the tears fall.

I am the one who holds her down on the table as she screams because the anesthesia for yet another test burns.

I am the one shouting at the anesthesiologist that she is not supposed to have that anesthesia because it decelerated her heart rate previously.

I am the one who can recite her medical record- hospitalization dates, failed medications and their dosages, previous side effects, diagnosis, list of doctors, phone numbers, seizure frequency- by rote.

I am the one who yells “Are you ok?” Every time there’s a loud noise in the house.

I am the one who sees the gap between her and her peers ever widen.

I am the one who reads specialist reports and wishes they focused more on what she can do than can’t.

I am the one that sits in the IEP meeting fighting for more services to try to close that gap.

I am the one trying to prove that she’s worth fighting for when really it should just be known.

I am the one who can’t sleep because of the fears no one wants to talk about.

I am the one who says a prayer every time I touch her bedroom doorknob that when I open it I won’t find a dead child.

I am the one who will lie next to her watching her breathe, grateful for every breath that she doesn’t have to fight for.

I am the one who spends hours every day working toward safe, consistent, legal access to the cannabis that could be her miracle.

I am the one who feels like a failure even though it’s our government failing her.

But…
I am the one who saw my child emerge from her zombie like state.

I am the one who marvels at a gleam in her eye that was never there before.

I am the one who stops in my tracks at every new word.

I am the one whose heart fills with love and pride when after a night full of seizures my girl gets up and goes to school.

I am the one who caught her breath the day that she carried her own backpack after months of being too weak to do it.

I don’t want to be her nurse, her therapist, her teacher, her lab tech, her personal scheduler.

I just want to be her Mom.

What I am- much more than a Mom

Purple Day- It’s our life every day

March 26th is Purple Day for epilepsy awareness. But it’s our life every day.

Our life with epilepsy. It’s probably much like a life without it but then different. Frustrations and celebrations both the same and different.

Haley and her service dog napping off a seizure during a hospitalization.
Haley and her service dog napping off a seizure during a hospitalization on Halloween.
2 epilepsy warriors sharing a carousel ride after participating in a protest for cannabis access.
2 epilepsy warriors sharing a carousel ride after participating in a protest for cannabis access.

There are times when we could forget, even for a moment, how different life is when epilepsy is an unwelcome guest. But Haley hasn’t had 24 hours seizure free in over 2 years so I don’t really remember. I count our good times in minutes, sometimes hours. But sadly never days. And the idea of weeks or months seizure free? Well. It’s been a long time since I hoped for that. I haven’t given up but the continued waves of disappointment have worn down my expectations. We just never know.

Our life with epilepsy is holidays in the hospital. Christmas, Halloween, Easter. We’ve spent them there. And some years it’s holidays at home fearing we’re going to end up in the hospital. And sometimes it’s watching her run around and collect eggs on an egg hunt and opening presents and going trick or treating and not thinking about the hospital at all. We just never know.

Sometimes our life with epilepsy is needles, and iv’s and NJ tubes and painful procedures and anesthesia yet again. And sometimes our life with epilepsy is swinging on the swing, sledding in the backyard, making sand castles on the beach. We just never know.

Sometimes our life with epilepsy is frustration, behavioral challenges, sensory issues, food aversion, special meals. And sometimes our life with epilepsy is a family dinner, a pretty new dress, snuggle time and homework. We just never know.

Sometimes our life with epilepsy is tears of frustration and “No, that’s not safe” and “what if you have a seizure”. And sometimes our life with epilepsy is skiing, and sleepovers and dancing on a stage and a cartwheel. We just never know.

Sometimes our life with epilepsy is blue tinted lips, fingers and toes, the dreaded cyanosis. Sometimes it’s dilated pupils and slurred speech. Sometimes it’s convulsions and CPR. Sometimes it’s stiffened limbs and bulging eyes. And sometimes it’s smiles, and giggles and Ever After High dolls and fetch with the dog. We just never know.

Sometimes our life with epilepsy is bruises and bloody faces. It’s bitten tongues and cheeks and the unmistakable moan as the air escapes the lungs as the seizure takes over her body. And sometimes it’s playing Minecraft and finding a hidden village, or getting your sister to play Candyland with you. We just never know.

Sometimes our life with epilepsy is learning. Learning the merits of a pretty flowering plant called cannabis. It’s educating myself and others on its benefits and fighting the willfully ignorant to bring access to this medicine to all patients in need. It’s empowerment. And sometimes it’s too many deaths and too many families in need and too much weight to carry. We just never know.

Sometimes epilepsy is an intruder. Lurking always in my peripheral vision. Every thought, every decision made with the premise of what if it invaded right now. Would she be safe? Are any of us really safe from its intrusion? 1 in 10 people will have a seizure in their lifetime. 1 in 26 will develop epilepsy. Would you know what to do if someone you loved had a seizure in front of you? Do you know to NEVER EVER put something in the mouth of a person having a seizure? That myth, long perpetuated, is one of the things I fear the most as my daughter gets older and more independent. I fear that some well meaning but uninformed person will hurt her by doing what they think is right but is really dangerous.

Do you know if I’m with my child at Target and she seizes please do not call 911 without asking me. I deal with this every single day by myself. Please don’t complicate it with an unnecessary trip to the ER. Please do ask if I need help. Sometimes I may need you to help me grab a coat for under her head or just to know someone is there. But most often I’ll just give you a sad half smile and say no thanks. I got this. Because I do. We all do. Every day even if we don’t know what the day holds because that unpredictability is by far one of the hardest parts of living with epilepsy. We just never know what kind of day it will be.

Epilepsy is: 1 in 26. It is 33% of people with this condition unable to control their seizures with current treatment options. It is responsible for 50,000 deaths in the US every year. It is severely underfunded, understudied and misunderstood. It is our life. Our purple life.

Ordinary Amidst the Chaos

Normal. Ordinary. Typical.
Words that most people rebel against. They want to be different. Unique. Seen as an individual.
And yet. When your whole life becomes a series of medical professionals uttering the words “unusual”, “atypical”, “extraordinary”. You learn rather quickly than ordinary is a gift. One we get glimpses of even if they come with disclaimers. Sometimes (ok. Rarely) they simply happen but more often we orchestrate them. (Which in and of itself is not normal) But moments that I refer to as ordinary amidst the chaos that generally makes up our life.

These are the moments that you don’t know matter until you live without them, moments that others take for granted:

Skiing. Never say never.
Skiing. Never say never.

Moments like-watching your child lick the beaters from the cake you’re baking. It seems like an ordinary moment but because of Haley’s diet restrictions, is extraordinary in our home.

Moments like: a day at the mountain skiing. No. She can’t go on the chairlift. No she can’t even ride the magic carpet without a grown up next to her. But she sailed down that beginner hill with her arms behind her like she was racing and my heart leapt at her unbridled joy.

Moments like: choosing a tv show and having it be an age appropriate choice rather than a preschool show for my 8 year old.

Moments like: all of us sitting at a family dinner eating the same. Exact. Thing. And the joy that shines in her eyes when she didn’t feel excluded or different.

Moments like: her getting caught playing on her iPod at 10pm and getting grounded from it for the first time ever. I welcome these typical problems!!!

Moments like: that ONE time she wore jeans even though her sensory issues are so severe that she will only wear dresses and leggings. (And even then usually the leggings have to be stretched and the dress cannot have a sash or elastic at the waist). But for that one day she conquered them.

Moments like: sitting at a restaurant and watching her order the first meal that I didn’t prepare for her in…well, years. (And then digging in my purse for the specific stevia and hummus that are diet approved)

Moments like: watching her eat her first banana in 5 years. It’s the one food that her diet therapy doesn’t allow for that she asks for nearly every day. After 4 years we finally we gave in

Moments like: taking a field trip and going on the school bus.

Moments like: going to a sleepover at the Museum of Science with her brownie troupe. (And though she did have 1 seizure that night it was mild and didn’t deter from the fun. We did pay for it over the next several days however. Shrug. That experience was worth it)

Moments like: (this one is for you Delia! We are so proud of you) Opening her own carton of milk and inserting the straw unassisted at school. One less thing that isolates or separates her from her peers.

Moments like: waking up on St Patrick’s Day morning and asking to go downstairs to see if the leprechaun came and letting her navigate the stairs on her own.On her own!

Moments like: watching her saunter off into her gymnastics class. Alone!

Moments like: riding a ride at an amusement park. (Only ones where she is fully secured and an adult can ride next to her. Busch Gardens was the best park we’ve ever been to for this)

Moments like: Her playing in her bedroom with her dolls by herself for the first time ever at age 6. By herself people!

Moments like: letting her go into the bathroom unsupervised for the first time ever at age 7.

Moments like: bringing home a math test with a 100 that she completed in class with all of the other kids.

Moments like: watching her sound out a text message to a friend instead of just sending emojis.

Moments like: taking a brain break day off from school and spending the day on the couch snuggling with Mom. What? Ok. Maybe that one isn’t ordinary. But it is our life. The chaos and the beauty and the little moments that add up to this life we live. Together. Filled with moments both ordinary and extraordinary but every one of them full of love.

SN-TSD: Special Needs Traumatic Stress Disorder

SN-TSD: Special Needs Traumatic Stress Disorder. Ok fine. I totally made that up. PTSD in special needs parenting is a very real thing. But also not exactly accurate. Because I think it’s important to note that there is no P in it. Because we get up and live these scary moments every single day.

It’s been 5 years since the hospitalization that resulted in Haley spending 14 days in a medically induced coma as a last ditch effort to save her life when the seizures were relentlessly attacking her resulting in status epilepticus, or status for short. 5 years to the day. And it haunts me still like it was yesterday. Like it’s today.
(Wiki says: Status epilepticus (SE) is an epileptic seizureof greater than five minutes or more than one seizure within a five minute period without the person returning to normal between them. The seizures can either be of the tonic-clonic typewith a regular pattern of contraction and extension of the arms and legs or of types that do not involve contractions such as absence seizures or complex partial seizures. Status epilepticus is a life-threatening condition particularly if treatment is delayed.[1] )

The images. It’s like they’re on repeat as they cycle through my brain; like old fashioned projector slides that play one after another. Flashbacks to the moments of anguish and fear that define me and the helicopter Mom that I am. When I put it out there that I couldn’t shake these images I had so many parents understand, empathize, say “I thought it was just me”. I had to tell you all- it’s not just you.

image

I see in rapid succession:

Haley stiff and blue. Eyes wide open, staring but not seeing anything. Unresponsive. Not breathing. What her corpse will look like.

Me walking around like a zombie- not figuratively, literally- with my arms straight out in front of me to catch her when she goes down without warning.

I see Haley slumped over. The egg on her head from where it hit the floor when she fell. I’m sorry baby girl that I couldn’t catch you that time.

Her eyes. They haunt me. The heavy lids and drugged up dopey look to them. The very essence of her drugged into non existence.

Haley convulsing for 90 minutes. 90 minutes! And the flood of relief when the seizure FINALLY ended. Only to be replaced by panic when another one begins in less than the time it takes me to catch my breath.

Frantically texting my husband in the middle of the night. “They’re moving us to PICU. Rescue meds not working. They’re saying coma. They’re talking about intubating her. I’m scared. I don’t know what to do. Come now.”

Watching them get the intubation kit out.

Watching them inject her veins with poisonous drugs meant to sedate her brain as a last resort. Knowing that we have hit the point of last resort.

Feeling relief that she held her airway after all. Everybody leaves the room and I crawl into the bed. I whisper to her that I love her. That I need to see her awake again. That like sleeping beauty she can rest but I need her to wake up.

I feel her sudden stillness. Oh my god. She stopped breathing. I can’t even think to push the call button I just yell. My husband opens the door and yells.

The PICU nurse watching the monitors- the one who is never supposed to leave that station- gets up and runs in anyway. She gives Haley a sternum rub and Haley’s vitals stabilize.

In that moment I don’t go to my daughter. I see myself back away. Give the experts room. So helpless. I don’t know what to do. I just try to stay out of the way.

Once she’s stable I crawl back in and hold her tighter. I ask her to please please not leave me behind. Please don’t teach me how to grieve you. Please don’t make me say goodbye.

I watch her for weeks in this state. I watch her o-2 levels and heart rate dip periodically for no reason. I become obsessive about watching the monitors.

I snap awake-my head dropping. I am standing up. I just fell asleep standing up. The level of exhaustion is incomprehensible. Torture.

I watch them insert an NJ tube for nutrition and meds.

I watch them nourish her with Keto Cal. A special formula that complies with the Ketogenic diet ratio that we hope will be her miracle after so many drugs have failed.

I put Play doh in her still hands because I think the tactile stimulation will be good for her. I play her favorite movies even though her eyes don’t open. I talk to her with no idea if she can hear me.

I tape up a collage of photos so that the Dr’s and nurses get a visual, tangible reminder that she deserves to be more than this sedated lump. That she deserves to live.

I fight to have PT come and stretch her muscles every day since she is immobile.

I see the neurologist come in and sit me down. My God what worse news could there be??!! She’s in a coma. She’s still having subclinical seizures on the EEG. Around 30 of them. They need to increase the sedation.

I see the image of a med student about to perform a spinal tap on my baby. I want to say don’t let her. Get someone more experienced. But I’m too timid. I watch her do it perfectly. And I apologize in my head.

I watch IV after IV blow. I watch my baby wince in pain even in her sedated state and after 5 failed attempts I stop the IV nurse. No more. She’s blowing through 3 iv’s daily. We can’t keep doing this. I fight the resident who doesn’t want to listen to me and insist on a PICC line. No more IV pokes. No more blood draws. The PICC will function for both.

I watch my mousy, meek self stand up to the resident and attending Dr and slump with fatigue that is both physical and emotional once they leave the room after finally consenting. I watch the nurse comfort me. “It’s what I would do if it were my child” she says. Her words are balm for my uncertainty.

I never leave her room except for a 10 minute shower every other day. I don’t go to the cafeteria. I lose 10lbs. I don’t take a walk through the halls. And I never leave the floor or the hospital despite Dr’s telling me every day to step outside. (I’m sorry Emily for how abandoned you must have felt. Haley needed me more)

I unrealistically think she’s going to wake up and just… be Haley again. I am unprepared for the visit from the PT about choosing between rehab hospitals. I thought we could go home? Can’t I just take her home?

I watch as my 3 year old is awakened gradually from her coma. I am unprepared. I did not expect to have a 3 year old infant. She cannot eat or drink safely. She cannot hold her head up or sit up. She cannot hold a crayon. And she definitely cannot walk anymore.

I watch myself unable to hold it together. I see myself crying. Sobbing uncontrollably. I want to be strong. I need to be strong. I am not strong.

I watch me pull myself together on the outside. I learn how to weep silently on the inside.

I watch me win a bet with the Dr-guessing to the decimal- where her med levels will come back at. I needed that validation. That I can trust myself. I win a bowl of lobster bisque from the neuro. It tastes bitter. Like defeat even though I won.

I watch us relive this scenario almost every year. Except now I know more. Now I say no to the coma. Now I push for different drugs. For a different emergency plan. Now we turn to a plant instead of poison. Now we are told not to come. They can do nothing there that I cannot do at home.

I am not a Dr or a nurse but I am expected to care for her with the expertise of one.

I watch seizure after seizure. Thousands of seizures. And I can never stop the well of panic that rises with every one.

I watch my phone expectantly. I play over in my mind the call from the principal at her school hearing the echo of her voice in fragments “Seizing 6 minutes” “Ambulance called” “Rescue meds needed”

I watch me race to the school and park haphazardly. I BEAT the ambulance but I can hear their sirens.

I see my baby girl. God my baby girl. Surrounded by people at the bottom of the stairs. God no. Did she fall down the stairs? No. No they moved her to that private area when the seizure started at a school wide meeting. I cannot even process that right away. It will be hours before I confront the thought that every kid in school just saw her in her most vulnerable moment.

I watch myself bark orders at the EMT’s. Postictal state usually averages 30-60 minutes. Not actively seizing anymore but pupils still dilated. 10mg rectal diazepam given. Respirations slow. Need blow by o-2. No transport unless another one starts. Because I can do this at home. Because I do do this at home.

I see her. The night of her first seizure. Wearing her favorite Cinderella dress up dress. I refused to let the EMT’s cut that dress. It was her favorite. She will be so mad when she wakes up. She is going to wake up right? Please don’t let my baby die.

I watch myself gingerly take that dress off of her. I lift her onto the stretcher laid out on my kitchen table myself. I can’t turn her over to strangers, the EMT’s. She needs her mommy.

I see myself in the ER snapping at the nurse asking for my insurance card. I’ll trade you insurance info for an effing Dr. because my child stopped breathing and there’s still no doctor in this room.

I look at photos of Haley at age 2 in the days before her first seizure. She had been sick. There’s one photo of her lying on the floor. I thought she was sleeping but oh my god. When I see it now. Her eyes are open. She was seizing. Seizing as I snapped that photo and I didn’t even know. I. Didn’t. Know. How could I not have seen? How can I forgive myself for not seeing?

I see myself every time I hear a siren- tensing. Panicking. Heart pounding. Breathing fast and shallow. Knees weak. If Haley isn’t with me I go to the scanner app I downloaded on my phone and listen to see- is it my girl? If she is with me I talk myself back down but can’t stop that initial moment of utter panic.

I would have done so many things differently if I could go back. I would take myself by the shoulders and shake me. I would say trust yourself more Mama. Believe in your instinct. Do not just blindly accept that the Dr’s know more than you. Stand up for yourself when they disregard you. I would take my own chin in my hand and look in my eyes and say you will have moments, days, weeks, maybe even months where you don’t think you can do this. But you will. You are. Every day. I wish I could tell myself one day you’ll learn. I wish you’d learn sooner. It would help. But you’re stubborn. I wish I could say to the me slumped sobbing in the chair of a PICU room 5 years ago today while my comatose 3 year old lies next to me seizing despite the dangerous drugs that are all they can do that we will both live through this. Not unscathed. Not without physical and emotional scars. We will be Utterly changed. Neither of us will ever be the same as we were before that coma. But we will survive it. That makes us one of the lucky ones. I know too many parents grieving their children to feel anything other than gratitude and guilt at the luck that I still have mine. I wish I could say that what seems impossible in that moment will become possible. Haley will defy odds and limits and do more than survive. She will thrive. I wish I knew sooner that there is a plant.

I wish I knew then what I now know too-that I am not alone. That far too many special needs parents are battling these same demons, this PTSD like existence that never ends. The ongoing cycle of panic and fear and hope. And to each and every one of you playing your own mental photo reel right now, or having your own moment of panic when you hear a siren- anywhere a siren- you are not alone either. We are all in this together. Bound together by sleepless nights, and a love for our children that transcends all the struggles.

The unseen- siblings of special needs kids

Emily and I on a rare 1:1 lunch date


The unseen-siblings of special needs kids

Invisibility. That’s the superpower that siblings of special needs kids cultivate. Even if they wanted a different one like being able to fly they would be stuck with invisible. It’s not a choice. None of us got a choice. image

It’s not that I don’t actually see my other children. And it’s not that I don’t try. It’s just that no matter how much effort and attention I give them Haley, by virtue of her diagnosis, needs more. We all sacrifice things for her. Whether it’s a family vacation because the medical bills are too much, or a trip to an amusement park because Haley can’t do the rides, or not participating in an after school activity because Haley has a Dr appointment. But one of the things that we don’t really acknowledge is sacrificed is our family dynamic. Our relationships with each other.

In order to keep my older daughter’s life as normal as possible my husband and I do a lot of divide and conquer. The problem there is in the word divide. Because we can’t unite and conquer, it’s not really possible to plan for all of us to spend 6 hours at a swim meet. So we are left feeling like we are split shift parenting and just passing by one another most days. But it’s the only way to keep any semblance of normalcy for our children. And so we sacrifice the typical in favor of the workable.

I have sacrificed the relationship that I thought I would have with my older daughter. Because of our divide and conquer approach I am typically taking care of Haley while my husband is running Emily around. They have a standing Father daughter dinner date on Friday nights after swim practice. There have been many moments that I regret missing, far too few of my own one on one moments with Emily. But it’s a sacrifice we are forced to make in order to make our family work.

Haley’s older sister Emily is a compassionate, sensitive girl. She sees, really sees, people. She is the kind of girl who would never watch someone sit alone in the lunch room without going over and inviting them to join her. She’s the kind of girl who talks openly with me about the things that teens struggle with- body image, sexual orientation, dating- and has no shame about who she is, embracing her quirks and individuality with vigor. She is accepting of everyone as she tries to navigate the bumpy waters of being a teen with dignity and maturity and confidence. She is comfortable with herself in a way that some people never are. But I know that our moments together are too few. And I recognize that she is all of those things in part because of what she’s watched her sister endure.

She’s also the same girl who once said that she wished she had an incurable illness so that we would pay as much attention to her as we do to Haley. And she’s the one who every time I say no will ask “because of Haley’s seizures?” Not knowing that it cuts a scar in my heart each time I let her down. She’s the one who has learned to ask before she eats the last of anything- is this for Haley? Because she knows that Haley can only have certain foods due to her diet therapy. She’s the one who has watched me prepare precise meals and treats for her sister every day while she has to settle for whatever Mom isn’t too tired to make.

She’s also the one who will drop whatever teen thing she’s doing to read her sister a bed time story. She’s the one who lets her sister hang out with her and her friends more than most kids her age. She’s the one who when she hears us go rushing through the house will drop what she’s doing and rush to her sister too. She’s the one who will hold Haley’s hand as the seizure grips her body and she will echo my own words “It’s ok Haley bug. I’m here for you”.

On the night of Haley’s first seizure, as Artie ran outside to help the ambulance find us, and I was on the phone with the 911 operator sobbing “please don’t let my daughter die, she’s not breathing”, Emily was the 8 year old girl left on her own to cry in the living room with no one to comfort her as I breathed air into her sisters mouth. She is the one who had no one to dry her tears as I was too busy putting my ear to Haley’s nose to see if she had resumed breathing. Emily is the one who went outside with the first policeman on the scene to see his car as he distracted her while the paramedics loaded her sister on a stretcher. She’s the girl I left behind that night to go with her sister. She’s the one who needed my care and comfort but went without because Haley needed me more.

That was the night that Emily became one of the unseen- the sacrifices, the casualties- of special needs families that don’t get talked about often enough. The sibling. The girl who feels invisible. What I want to say most is I SEE you. Not just Emily, all of you. I see you. Even if you feel invisible, even if your sibling needs more, I hope to give you enough so that you know that you are seen. And loved. And I hope you know that I would give anything to take this from you, not just from your sister, but this burden of yours as well. You are not unseen, you are just unsung. The unsung hero sacrificing pieces of your own childhood and life to save your sister. I see that. I wish I could protect you from it, but since I can’t I hope you know I’m here and I see you. I see your fear and your love and all of you. Even when you think I’m not looking I AM. You are not invisible to me.

When good enough just isn’t good enough anymore.

It was good enough for awhile but it’s not good enough anymore. This picture depicts Haley’s daily medication regiment.

5.5 years ago when she was diagnosed and the first medicine they gave her didn’t work it wasn’t good enough. We pushed for better. So they gave her more medicine
When that medicine elevated her liver enzymes and caused permanent liver damage it wasn’t good enough. We pushed for better. So they tried another medicine.
When the next medicine triggered more seizures and forced her into a medically induced coma to stop them it wasn’t good enough. We pushed for better. So they gave us new medicine.
When she awoke from the coma unable to hold her own head up or sit unassisted let alone walk independently it wasn’t good enough. We pushed for better. We fought for inpatient rehab.
When we left the rehab hospital a month later still unable to walk without assistance it wasn’t good enough. We pushed for better. We fought for extra outpatient rehab.

This is what 75% improvement looks like. This is why it's still not good enough.
This is what 75% improvement looks like. This is why it’s still not good enough. 

When she continued seizing and failed medication after medication it wasn’t good enough. We pushed for better. They offered surgery as an alternative.
We went for a surgical evaluation and were told that she wasn’t a good candidate. That she would likely be left unable to walk or speak. It wasn’t good enough. We pushed for better. We researched new and innovative treatments and tried many alternative therapies.
When we learned of children having success controlling their seizures on medical cannabis we were told that it wasn’t legal. It wasn’t good enough. We pushed for better. We started fighting for it in our state.
When MA voters approved a ballot question allowing medical marijuana the regulations limited pediatric access to children within 6 months of dying. It wasn’t good enough. We pushed for better. Our Dr testified before the committee about the impact that would have in chronically ill but not terminal children.
When those regulations were changed but access to cannabis medicine has been stalled repeatedly by beaurocracies it wasn’t good enough. We pushed for better. We staged a protest and continue to speak out at every opportunity. Not for attention or fame but crying for help.
When Haley’s seizures escalated and she was needing life saving doses of rescue meds 4-5 times every day but our doctor told us not to come to the hospital because there was nothing they could do. It wasn’t good enough. We pushed for better. We insisted cannabis was our answer.
When she entered a clinical trial for a pharmaceutical version of cannabis we thought we had found our good enough. But it lacks the synergy that occurs naturally in the plant and isn’t working. It’s not good enough so we pushed for better. Naturally occurring whole plant access needs to be available to every patient in need. We continue to fight for that in a legal state.
When I researched and networked and found potential in another medication that we hadn’t tried yet our doctor said I really don’t think that’s your answer. I’ve never seen it work long term. It wasn’t good enough. I pushed for better. I presented all of the evidence I could that it was worth a try.
When our Dr sent a prescription for the medication that I found and fought for I stood staring at the list of side effects and thought It’s not good enough. We have to do better. But I gave her that pill anyway.
When the first dose of that medication decreased her seizures by 50% and over the following week she had a 75% decrease you might think it was good enough. But she experienced rare nervous system side effects and struggles with managing metabolic acidosis which can be fatal if not properly controlled as a side effect of that medicine. It’s not good enough. We have to do better. But I continue to shovel that little white pill in her mouth.
When months go by and we are grateful for the decrease in seizures but we are forced to acknowledge that despite the decrease in seizures she’s still seizing EVERY single day we realize. It’s not good enough. We have to do better. We need to fight harder and get access now. We cannot wait.
When I look around at my network of special needs parents and see so many kids in and out of the hospital. So many ambulance rides and emergencies and just being beaten down daily by watching their children suffer I know… It’s not good enough. We have to do better. We have to support one another and join our voices.
When I say we I mean all of us. Even those who don’t have a child suffering. You have a voice. You are powerful. You can help. You can look around you at the state of our healthcare and marijuana laws and you can say…It’s not good enough. We have to do better. And by we I mean me too.
Do better. Be better. Get involved.
Start here:
http://www.parents4pot.org

I’m trying my best but I still make mistakes

I am trying my best but I make mistakes. Sometimes big ones. Big ones that can endanger my child. That could kill her even. And that’s ok. I’m still a good parent. And you are too.

“It’s ok.”

“We all make mistakes.””

“You’re only human.”

“We’ve all done it.”

None of those phrases matter in the moment that your heart stops and you frantically try to remember- did I give her her meds this morning? And realize- holy crap. I forgot to give my child her medicine. The medicine that keeps her alive.

Sleep deprivation, stress, depression. They all lead to memory issues. Plus add in that this medicine must be spaced 2 hours from that medicine and this one can only be taken with food but that one can’t be taken within 2 hours of consuming dairy. Sigh. No matter how many alarms you set. No matter how foolproof you think your system. You will forget a dose. This will happen at some point. (Unless you’re SuperMom. In which case I would whip you up a crafty cape but you can do it better so have at it. While you’re at it can you make some keto treats? I’m too tired)

You will judge yourself. You will waffle between fear and anger. You will be afraid that you have just put your child in a situation that could kill them. And it would be your fault. That’s how you will feel. That’s all true. It’s also ok.

Beyond the shock, fear and anger is the what do I do? Do I give it now? Skip it altogether? I am not a Dr. I am not capable of handing out medical advice. I know what our epilepsy specialist advises. (Because yes. I have forgotten. More than once. Told you you’re not alone.) But knowing that it will happen at some point I suggest you contact your neuro and have a plan if you don’t already. It will be one less thing you’ll have to do when you’re busy beating yourself over the head with guilt.

And that guilt will stay with you over the next several days, or if you’re like me, even longer. Every seizure you will wonder could that one be my fault? Was it longer than usual? Stronger? Did I do that to her? I can’t stop you from feeling these things, hell, I can’t stop myself from feeling them. But I can tell you you’re not alone. This is one of the most frequent calls for help I see in online epilepsy groups.

“We all make mistakes.”
“You’re only human.”
“We’ve all done it.”
“You are not a bad parent.”

Now. If I could just listen to myself. (And no. I didn’t forget today because most days you remember. When was the last time you gave yourself credit for all of the times you remembered? Never? Yeah. Me neither.)

Emotional Avalanche Ahead

Avalanche-

Since I live in New England where we are buried in several feet of snow and expecting more (seriously Mother Nature?! More??!!) I could be referring to an actual, literal Avalanche. But I’m not. I’m referring to the Avalanche of emotion that special needs parents go through on a daily, sometimes hourly, basis.

I heard once that all special needs parents have PTSD without ever getting to the P because it’s never over. I so often refer to our life as some variation of Groundhog Day.

Some moments it’s the fear that comes crashing down and robs my lungs of the ability to breathe. I, and many SN parents, literally fear for our children’s lives. Whether their diagnosis is seizures or a different neurological disorder, or a mito disorder or diabetes, we really must face that our children are at much higher risk of death. And while I believe that it’s important to acknowledge this, because knowledge is power, I also believe that it’s important not to dwell here. I do not want to spend the days that I DO have with my child too afraid to live every moment with her. That doesn’t mean that I don’t have moments where it smacks me in the face like a ton of bricks Because it does. Regularly. (like when she’s convulsing and blue and I feel like I’m being forced to see what she would look like in death…again). But I let myself acknowledge it for the moment and then move on. I try not to judge myself for those moments of what I perceive as weakness but I’m not always able to follow my own advice.

Usually accompanying the fear for me is sadness. More specifically grief. It’s a process, probably an ongoing, never ending process, of grieving every missed milestone. Every lost skill. Every regression. Every seizure. Every missed gymnastics class. The childhood that I envisioned for her. The parent I thought I’d be. The experiences and traveling I thought our family would have. But again. While I acknowledge that I’m grieving and sad, sometimes heavily and darkly so, I fight through it. Though I allow myself to give it a moment because those dreams deserve to be acknowledged too.

So many of my fellow SN Moms express anger. I read a great quote (I’m a quote addict! What? You didn’t know. We must not be FB friends yet!) that said “Anger is just sad’s bodyguard”. I think I’m too exhausted to have a bodyguard so I missed this step. Or it’s part of the grieving process that I haven’t hit yet. The one thing I never let myself indulge in is the why me’s. It’s not productive. It can’t help you. If you have them you are only hurting you. Please let them go.

The one thing that consumes me every minute of every day is exhaustion. I live in a perpetual state of tension and awareness that exhausts me to my emotional limits. Factor in the fact that Haley has had nocturnal seizures every single night for at least 2 years and it’s a recipe for bawling in your coffee over nothing and everything all at once. And I have insomnia. Not the oh I hard a hard time getting to sleep last night kind, the kind where I desperately crave sleep and the harder I chase it the further away it seems. But mostly it’s because I’m afraid to sleep too soundly and miss a seizure, THE seizure, and despite the fact that we have a baby monitor, an Emfit movement alarm and a service dog, I still am afraid. (Remember what started my emotional Avalanche. Fear. They’re all intertwined) And so I have become the person I said I’d never be; groping for coffee in desperation just to get through one more hour before I rinse and repeat.

Mixed into my Avalanche is shame. Not of Haley. Not ever. Of myself. Of my inadequacies. Of all that I haven’t or can’t do for her. Ashamed of the exhausted, fearful, sad, overwhelmed Mom that I have become. But part of that is my grieving process (told you they’re all intertwined!) and grieving the Mom I thought I’d be. This may not be in every SN parents Avalanche. As parallel as our paths may be our journeys and emotions are as unique as our children.

And when the Avalanche begins with whichever emotion sets it off I ride it from one to the next. Sometimes in moments, sometimes in days. And I claw my way out to find a new emotion in my Avalanche. Hope. Hope for Haley. Hope that someday even if she still has epilepsy that her quality of life will improve. I have hope every time she surprises me with a new word, or skill. And when she teaches me to never give up. She is teaching me to believe in myself and have confidence and she gives me hope that she will manage to have those as well despite navigating her own emotional and physical avalanches.

And through my hope I find purpose. A sole minded focus and intention on being someone who will HELP others who are struggling rather than just be a bystander. I can bend all of these emotions to fuel my purpose. I can help others, hopefully including Haley. I can do it with my voice. By speaking up and sharing our story even when it’s hard. Even though it opens us up to a level of judgement that can sometimes trigger my emotional Avalanche all over again. It’s worth it. And I can do it on my actions. (Watch for a seizing hope announcement soon!)

And in my purpose I find joy. When I kiss her forehead after a seizure and she wraps her arm around me neck in a death squeeze. I am overjoyed that she reaches for me with confidence that I’ll be there. Because I will. Every step of the way. Even as we slide along the Avalanche. Together.

Us versus Them-Taking bets

Us versus them- the divisiveness between CBD only supporters and whole plant advocates and patients and physicians.

There is this divisiveness within the cannabis community. CBD vs THC and then a small population of us in the middle who want one but advocate for all. Supporters of legislation that promotes a CBD only mentality- typically defined legally as less than .3% THC- assert that if their legislation saves one life it was worthwhile. They also like to claim that they are introducing these efforts in states that would “never” pass full access legislation. But there are deficits in these proposals that cannot be overlooked or skimmed over. Looking, for example, at states that are trying to pass CBD only laws but NO in state cultivation. Essentially they are saying we are urging you to commit a federal crime by trafficking this schedule 1 substance over state lines, but we wont prosecute you for giving it to your child once you are here. However if you get caught somewhere between that state and our state, umm, too bad. How does anyone look at that and consider it reasonable to create a law that STILL makes parents become criminals to save their children? Or adult patients criminals to save themselves? And while I cannot argue with the idea that saving even one life is great work, I assert that it is not enough. I could not hold my child in my arms at night knowing she was saved and feel good about that if I have to consider the children who are dying because I supported something that road blocks the efforts of another parent or patient to save their child or themselves because they need something different. And that’s where we all need to get on board about cannabinoids. CBD, CBG, THC,CBN, THCA, CBDA, the list goes on and on-and they are all different. Not better. Not worse. Just different. We have to stop trying to make one a hero and one a scapegoat and make them all accessible to everyone who needs them.

As if it’s not enough that there is this infighting within the industry, the us vs them mentality in the medical community runs rampant as well. Patients are urging doctors to acknowledge this treatment as a legitimate treatment for a variety of conditions. Doctors are skeptical, conservative, citing first do no harm and they are unsure of the harm cannabis could inflict. They routinely spout that we lack studies and knowledge about the long term effects of cannabis and many truly feel that they cannot in good conscience recommend something that might hurt the patient. However giving them all of the benefit of the doubt that they truly feel that way and are not just still buying into decades of manipulation and lies, does not stop them from doing exactly that with experimental treatments (seriously-check NIH for how many studies there are on experimental treatments for seizures. Treatments that we don’t know all of the facts about or long term consequences) and harmful, addictive pharmaceuticals that also have NO long term studies on their effects in children. We recently consulted for a VNS device for my daughter. It is not FDA approved for children under 12. When I asked the surgeon about that she said that is because it is too expensive to do the studies it would take for approval, and brushed it off as though that approval means nothing. If that is the case then why we are holding cannabis to a “higher” (pun totally intended) standard than our pharmaceuticals? I can open my medicine cabinet right now and read off labels and side effects that would curl your toes from medications that aren’t approved for my daughter at her age but that have been prescribed to her anyway. And no one stopped to consider first do no harm then, because you know what’s harmful? Seizures.The seizures that my daughter endures daily. The ones that steal her energy and have robbed her of a childhood and that I fear will take her life. That is what’s harmful. When I look at these bottles upon bottles of pills-both prescribed and over the counter- it makes bile rise in my throat to think that there deaths contributed to every single one of them. Even Tylenol can kill you. You know what has never killed anyone? Cannabis. So who is doing harm now by pushing these drugs down my child’s throat and risking her life by taking them, but refusing to endorse treating her with a plant even when every single chemically laden pill they can think of has failed her?

Patients are advocating for themselves. They are standing up to both doctors and politicians and demanding more. And feather are being ruffled. No one in either of those sectors likes to be challenged and they like control. I think the primary argument I’ve heard when reading between the lines on physician opposition is that recommending cannabis puts control of the patients treatment in the patients hands under all of the current regulatory models. But I have learned more in our 5 year journey battling this monster we call epilepsy from parents than I ever have from any doctor. When Haley’s doctor declared her out of pharmaceutical options I researched and found 1 drug that we hadn’t tried. And we are trying it now. And she is doing well on it. But it was up to me to find that information and present it to my doctor. They may not want to admit that we have patient directed care now, but I am willing to stake my life on the fact that most of the Moms I know-the Dravet tiger Moms and the Epilepsy warrior Moms, and the oncology Mama bears-they know more about their child’s condition and response to medications and have directed much of that treatment. They can list all of the side effects, even ones that doctors dismiss as not being a side effect, they see the correlations that doctors miss. Because of what’s at stake. Because of the depth of their love. Do you really think you need to tell me first do no harm to my own child? I’m the one protecting her from the harm you want to inflict sometimes!

So if it really is us vs them, my money is on us. Because our motivation is more than dollar signs, it’s measured in lives.Whole plant, full spectrum cannabinoid access to every patient who needs it.

Legal does not = Accessible. Pediatric cannabis in MA

I live in a state where medical marijuana is legal. Was voted for by 63% of voters in 2012. And yet there is still no legal access for patients. I’m going to give you a minute to puzzle that out-how voters could have passed a law 3 years ago that still hasn’t been implemented. Wrap your brain around it yet? Yeah. Me neither.

Essentially the DPH f-d up. And every time the media pointed out another time they f-d up instead of addressing the problem, they stalled the process a little more. And a little more, and a little more. So now-nearly 3 years later there is not a single dispensary open. None. Not one. And the caregiver law is overly restrictive only allowing a caregiver to grow for 1 patient. So how exactly is it feasible for a caregiver to invest the time and resources into sourcing and growing a rare, valuable, finicky high cbd strain when they can only serve 1 patient who needs it? Short answer-it’s not. We passed a law, but in the after effects of writing the regulations the scope of that law got smaller and smaller and smaller until it became an unworkable law and left us where we are today.

So, let’s talk about some of the problems with it. I am obviously fighting for Haley to access cannabis, loudly shouting from the rooftops about it (I hope you are too!). Initially the pediatric regulations required Doctors to prove that a child was within 6 months of the end of their life to be eligible to use cannabis. Now Haley lives with the possibility of a seizure ending her life any day. But she doesn’t necessarily have an expiration date. We wrote to the committee and our epileptoligist Dr Thiele testified before the committee that pediatric patients with chronic conditions could greatly benefit from cannabis even if they weren’t terminal. We might actually save lives instead of just easing them-Imagine that. Eventually the end of life clause was removed from the final regulations.

Great news right? Yeah…BUT. The pediatric regulations became so burdensome for patients AND doctors that they may as well not exist. Pediatric patients are required to have signatures or recommendations (recs) from 2 separate doctors not in practice together that state that the benefits outweigh the risk of treatment. One of those doctors MUST be a pediatrician or pediatric specialist. And you must have and maintain an established relationship with the doctor writing the recommendation. At first glance it all seems workable in theory. Then we get to real life. Because I forgot to mention that only Doctors that have completed a certain number of continuing education hours specifically on cannabis are eligible to write cannabis recommendations. How many pediatric specialists do you think are completing those continuing education hours on cannabis?

I know several pediatric patients, us included, who lobbied our doctors, long time pediatricians and specialists. We put together folders of information, we painstakingly presented our cases. In many cases Doctors empathized and agreed with us but were blocked from writing recommendations by the hospitals they are employed by because they rely on federal funding that they fear losing. Other doctors refuse to write them because they don’t believe the program is regulated well enough and only support a pharmaceutical model of dispensing cannabis. And then there were the rarities, the doctors who said yes. I see the potential here. Yes I will help you. So last year we got 2 doctor recs and Haley became a legal patient. But still without access…(Compare that to our neighbor Maine where they allow nurse practitioners to write recommendations and you only need one and they have open dispensaries and working caregiver models. Or our other neighbor RI which also has a strong established cannabis program accessible for children without burdensome, unrealistic, unworkable regulations)

Now the DPH has decided in the interest of progress they will require patients to register, finally addressing the legal gray area of having no patient registration system and the arrests that were taking place because there was no legal recognition for patients. No card or certificate to carry other than the Dr rec. Sounds good. Progress. Finally! Uhhhh, not so much. Where exactly is the justice in collecting money from people to register as patients for a medicine they still have no foreseeable access to? I’m sorry? Is that shortsighted of me? Or just reasonable to expect that if you want my money to be a patient there better be medicine to buy? And when you go to the pharmacy to pick up your Valium does the Doctor disclose your condition to the pharmacist and everyone that works in the pharmacy? If you have anxiety or seizures or some other disorder being treated by this highly addictive, dangerous medication?  Of course not! That is a violation of HIPPA and patient privacy. Yet as a cannabis patient you have no right to privacy and your doctor is forced to disclose the condition they are deeming treatable. Now imagine being a parent and being put in the position of disclosing your child’s medical condition and status as a cannabis patient and location of their lifesaving plants to whomever the state decides should have that information. (coincidentally caregivers/patients often get raided just before harvest leaving the patient with nothing…again. Just saying I have seen/heard too many of these occurrences to be called coincidence) But ok. There is a way to be legally recognized as a patient without a legal way to get medicine unless you have a caregiver willing to cultivate just for you or if you live in a place that permits you to cultivate your own. And you don’t get raided and lose your medicine. I haven’t met one yet, but I’m sure they’re out there trying not to draw attention to themselves. To them I say-Keep it up! Save your child!

Until…Jan 1st. Remember those continuing ed credits Doctors must complete? They must be completed by January 1st. There have been barely a handful of pediatricians and pediatric specialists in the entire state willing or able to write recommendations. Of the dozen or so children I know who were able to secure them more than half were notified recently with the registration system roll out that their doctors either did not deem it feasible to complete the number of continuing education hours required in order to write the recommendation for the single patient they see that they are writing it for, or their permission from their overseeing hospital was reneged due to HIPPA violations of submitting to the DPH.

Now what? Now we have left our most vulnerable patients-the children-without any access at all. And you think that this program was set up to be safe for them? It was set up to fail. It was set up to let children die without access.

I live in a legal state with a child who several doctors agree would benefit from cannabis, yet there is no doctor willing to put in the work required to help her and no medicine to give her. But here you go DPH…here’s my $50 to try to register her as a patient until our recommendation expires and here too is my $100 for a hardship waiver so I can grow it myself. Because clearly you care about the money and not the lives at stake. We have a law. But it’s an unworkable law and children are suffering and dying because of it.

So, insert slow, sarcastic clap here for the writers of these regulations that are allowing children to die. Bravo I guess. You got what you set out to do. A whole lot of money and no cannabis…Maybe you can allocate some of that money to pay for the funerals of the children you are killing…

(*Image attached is Haley mid seizure. She is experiencing anywhere from 10-50+ seizures every single day while we wait for access. I know there will be people who don’t think I should share this vulnerable moment, (I struggled with it myself) but the truth is that every moment in our life right now is vulnerable. We might seize hope but we endure our share of despair and it would be wrong for me to sugar coat what Haley is enduring because of political and medical agendas. So here it is at its most raw…)