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No Small Things. Living Hard, Loving Harder.

There are no small things. No small moments.

I never forget that just being alive is a gift to be cherished and grateful for.
I never forget that just being alive is a gift to be cherished and grateful for.

Last week Haley was doing incredibly well. Through a full moon, and traveling, and changes in sleep schedule because of the holiday- all seizure triggers- she had nights where I could count her seizures in single digits. It’s been months since she’s averaged fewer than 20-40 seizures daily. That reprieve and the depth of gratitude that I felt for it was a reminder that every seizure she can avoid is a moment of her life that she didn’t miss out on. Even if it was just one, it was worth the time to pause to reflect and be grateful for that moment that she stole from epilepsy instead of epilepsy stealing it from her.

Stealing a moment from epilepsy.
Stealing a moment from epilepsy.

This life I am living, WE are living, has taught me the importance of taking nothing for granted. As defeated as I often feel and as heavy as the grief is that I carry, I still remember to stop and cherish the feeling of warmth as the sun hits my face. I revel in the green smell of a freshly mowed lawn. I work harder to take in all of those things around me that most people are too harried to notice. And I do it because I see daily how fragile life is, how tomorrow is never promised. I do it because Haley has taught me that this moment is the only one that matters and if I don’t acknowledge it and the beauty of it it will be gone and I may never get another one.

Joy. Unfiltered, undeserved, innocent. Joy.
Joy. Unfiltered, unreserved, innocent. Joy.

And even in the hard moments I try to stay fully present. It would be easier to disconnect and guard myself against the pain I feel when she cries out in fear, or when she convulses and can’t breathe, and the only words I can utter are desperate pleas to just breathe, please just breathe for Mama. But I can’t. I owe it to her to live those moments that she’s being robbed of, and to live them fully. So I let the tears fall. I let the pain and sadness engulf me in those moments, and I let it fuel me to fight harder for her.

In the hard times we cling to one another. Living hard but loving harder.
In the hard times we cling to one another. Living hard but loving harder.

And I turn to humor when I’m hurt. Sarcastic, gallows humor as a protective measure. Her nickname is McSeizy, cyanosis is Smurf-ism and it keeps that pain and sadness that engulfs me in those moments from engulfing my life. Because I see how important it is to live. One great life, one life full of love, laughter, warmth, risk, appreciating every single moment, because one life is all you get. And you never know when it’s just going to be over. Life is fleeting and fragile and I am reminded of that every day.

So I will consciously acknowledge and appreciate the things others miss. The rose petal softness of her cheek as she snuggles up next to me. The weight of her head on my shoulder as she rests on me after a seizure. The soft feeling of her breath as she breathes freely, a miracle in and of itself that I find myself grateful for, on my cheek like butterfly wings. The way that she gropes for my hand as she cries out in fear and the pressure of her grip as she convulses. The desperate way that she continues to cling to my hand when the seizure ends. The beauty of a seizure free summer afternoon at the beach. The way we dance in the frigid cold of the waves. The sound of genuine laughter escaping from her lips as she plays. The unfiltered joy in her face as she swings higher, unmindful of the dangers imminent if a seizure strikes. Sometimes some moments are worth the risk. Because without any we wouldn’t be living this life at all. We would merely exist here. Life is meant to be lived. Fully. Freely. Present in every moment. Open and raw with your heart on your sleeve. Live hard. Love harder. And don’t forget to stop and smell the flowers of a pretty green plant that is changing misconceptions and minds while saving lives.

On the other side of the PICU wall…

The night of Haley’s VNS surgery we got a handy 24 hour stay in the PICU. It was precautionary as she has a notoriously difficult time waking from anesthesia and has limited options for rescue protocol.The PICU holds some awful memories for me and I was both sad and relieved to see familiar faces in the doctors and nurses in the floor. We were thankfully not in the same room where I watched my baby girl slumber for weeks in a coma I wasn’t sure she would awaken from.

No. This time we were in the side by the bathroom. Fist pump. (The PICU rooms don’t have individual bathrooms).
Haley recovered well from both the anesthesia and post op pain. Seizures were no worse than theyhad recently been averaging and we settled in for a long night of sleeping and seizing.

Haley in the PICU but doing well after VNS surgery
Haley in the PICU but doing well after VNS surgery

And then late into the night, I heard the commotion. Alarms ringing and pinging and voices shouting. Shouts to page respiratory. Shouts of codes being called out. Orders barked. But what really resonates in my mind was the sound of a Mom echoing through the wall. The long keening Noooooooooo followed by many more no”s strung together. The sobbing and crying so hard and loud that she was retching.

My heart broke
My heart broke

I lie there next to my child whom I was reasonably certain would be discharged the next day and I wept. For a little boy lost and a Mom whose grief I could feel though I cannot fathom the depth of what she was feeling.
I wanted to go to her. I wish sometimes that I had been brave enough to leave the cocoon of that bed with my living, breathing child and go to her. But I heard her cries echo down the hallway as someone escorted her out.

And when our nurse came in with her face flushed and tear stained to do vitals even though we didn’t need them, I kept silent. Knowing somehow that the routine and the reassurance were what she needed in that moment. Our eyes met and I wanted to ask- did he make it- even though I knew the answer. I desperately wanted her to tell me a miracle happened. But I couldn’t push the words out. I didn’t want to hear the truth. And she laid her hand on Haley’s forehead as tenderly as I would. She left with a wave and we settled back in, me wrapping both arms around McSeizy and burrowing my face into her. Grateful and guilty at the same time. And the thought reverberating in my head was “I heard a little boy die tonight”. I felt helpless and hyperaware of the fragility of life though I see reminders of that daily in my own warrior. Contemplating too that I could have been somewhere else that night, blissfully unaware of the anguish inside those walls. A reminder that we are all living parallel lives and so many never intersect.

Tonight we are home. It has been nearly a month since that night but I can’t forget the boy whose head was just on the other side of the wall or the Mom who must be still so grief stricken. And I wish I could tell her that I’ll never forget them. Either of them. They haunt me when I lie next to my baby girl and watch her chest rise and fall. And I am extra grateful for each breath that she takes knowing how hard he fought for his last.

I didn’t know that grieving a child would make you sob until you retch. I didn’t want to know. I hope I never feel that pain.And I know that it haunts me because I can imagine all too easily myself in her shoes. Because I have had moments that I thought might define me in that way- as a mother who has lost a child. Every time I see the stiffened limbs and blue lips, every time I hear her gasp for air that she can’t get enough of. Every time I panic. I fear that every seizure is THE seizure that will claim my baby girl. And it takes everything in me to not get bogged down by that, to push through it and live this life we have been granted.
I hope somewhere a Mom who is grieving her little boy knows that I grieve him too even though I was just on the other side of the wall.

Honoring the Moms…Some Give All

Some give some and some give all and some keep giving even when they think they have nothing left.

On Mothers Day I was just doing what mothers do. Mothering. I was cleaning and making meals and running errands and snuggling children human and furry. And all while I’m pushing the vacuum there are thoughts swirling in my head. I’m thinking of some of the amazing Moms that I’ve met throughout this journey. These women have rowed my life boat as it fills with water and threatens to sink. They have offered advice and ears and hugs. They inspire me daily.


Inspiring Moms like my friend Lisa. Whose daughter is non verbal and yet the most expressive girl I’ve ever met. She’s living, candid proof that love IS a language. And Lisa is a powerful and amazing Mom. Together they are proof that love really is enough.

Inspiring Moms like my friend Meghan. Whose daughter is defying all limits. They uprooted from a state without cannabis access to give their daughter this opportunity to thrive. And they are fighting misinformation and propaganda and double standards even in the cannabis community. All while managing their daughter’s treatment in uncharted territory.

Inspiring Moms like my other friend Meagan. Who also exchanged the life they had built for safe, consistent access to medicine and the happy giggles and babbles of her beautiful daughter. Worth the sacrifices for the moments of alertness and connection that were buried beneath a haze of pharmaceuticals. I just know that whether she ever takes a ballet class or not she’s already a star.

Inspiring Moms like my friend Julie. She has spent countless hours in the kitchen measuring to the tenth of a gram exacting meals that comply with the ketogenic diet. She runs a house full of boys and a non profit and yet still always finds time to offer help and uplifting messages as well as sharing her vast diet knowledge and experience.

Inspiring Moms like Tori. Whose fight to treat her own conditions with a safer medicine leaves her and her family vulnerable. Her passion and dedication humble me and inspire me daily. She shares her joys and sorrows with candor and compassion and is always, always helping others.

Inspiring Moms like Melissa. A single, hard working Mom with a heart of gold plated in steel. She works every day with cannabis patients, helping to ease their burdens and carrying far more than her share of pain and hope with a resilience and determination that is staggering.

Inspiring Moms like Susan. Who divided her family to give her daughter a chance to live. And while they are battling their way through a rough patch, even a rough patch now doesn’t compare to a regular day pre cannabis. And her ability to stop and acknowledge that and maintain perspective even in the hardest times leaves me awe struck. As does her continual willingness to share her experience and knowledge with desperate, searching parents.

Inspiring Moms like my friend Amie. Who fights so hard to give her daughter a real childhood between the seizures that intrude daily. She, like me, lives in a place that does not yet have access to cannabis. So in the meantime she fights with everything she’s got to find help and answers for her daughter. And then when she feels like she has nothing left she will still offer encouraging words to others.

Inspiring Moms like Michele. Who lost one son and finds it in her to fight for another. Who shares my love of all things salty- tears and ocean- and can always make me laugh with her colorful snarky humor.

Inspiring Moms like Paula. Who celebrated Mothers Day in the arms of two children where there should be three. But roadblocks to access meant their daughter didn’t get the chance to become a success story before a seizure claimed her life. But not her love. It lives on in her Mother’s fierce dedication to help others even in her own grief.

Inspiring Moms like Kristine. Whose daughter battles epilepsy, a mito disorder and just because the universe doesn’t know when to quit- it threw them Ewings Sarcoma too. But her daughter’s smile can light up a room. And together they have more spirit than a single universe can contain. And she wins hearts everywhere she goes. Because of the driving force of her incredible Mom who has built her up when life tried to beat them down.

Inspiring Moms like my friend Jennie. She is a devoted single mom, nurse and fierce advocate for cannabis. She uprooted from her home and moved to a state with better access. Now she bravely shares the struggles that takes and the trade off that entails. You might get access to a plant but you sacrifice so many things-quality of overall medical care, education, services in addition to the anticipated challenges of uprooting a medically fragile child to an entirely new place with no support system.

There are so many. I could go on and on and on. Mira, Cindy, Marcy, Meiko, Shaleen, Michelle, Judy, Briann, Desiree, Julie, Amy, Donna, DJ, Lisa, Jodi, Erin, Amie, Stacie, Brandi, Kim, Maura, Stacy, Penny, Jennifer, Danielle, Tina, Katie, Samantha, Shawnea, Amanda, Debra, Sara, Erin, Jennifer, Wendy, Angela, Keira, Elizabeth, Hilary, Annie, Kim, Lisa, Shanel, Rebecca, Diane and so many others. To all of you amazing, inspiring, loving Moms. I’m thinking of you. And acknowledging the way you wake up every day and give your all, and that even when it doesn’t feel like it’s enough. Please know that you are.

No silver bullets

In the emergency room after Haley’s first distinct convulsive, no doubts left, that was definitely a seizure they gave her medicine through an IV. I was naively relieved. My baby girl who had at that point had 5 witnessed seizures that we weren’t sure were seizures until that moment, was now, again, going to be ok. There’s a medicine for this. I thought that those seizures might sneak in from time to time but I thought that medicine was the silver bullet that would heal her.image

But it didn’t. Nor did any of the other pharmaceuticals available here in the US. Not only did they not help but many of them hurt. We turned to alternative medicine. Reiki, supplements, diet therapy, chiropractic, chelation, essential oils… You get the picture. And yet among those there was still no silver bullet.

13 months ago we were invited into a study for a pharmaceutical derivative of CBD oil. Despite my moral objections to this plant being dispensed by a pharmaceutical company and the science that says whole plant full spectrum cannabinoid (say THAT three times fast) medicine is better, more effective medicine I set those objections aside because it was our only chance at access. It was no silver bullet.

We finally gave in and had the surgery to implant a VNS device. It has only been a week but it is not a silver bullet either. I swipe and swipe and she seizes and seizes and eventually we both collapse in an exhausted heap.

When I talk about how much hope I have that cannabis could be her answer I hear a lot of “Be realistic”. “Don’t get your hopes up too high”(pun intended) Etc. I know families that have moved across the country for access and are surrounded by cannabis products that still have not found their right combination. However many are seeing some improvement. I don’t think any of us parents needs a reminder that this is not a silver bullet. We have bit down on despair and choked on sorrow too many times to believe in silver bullets. Even as we never give up hope that some day we’ll find one.

What I do really believe in is opportunity. The chance that even if it’s not a silver bullet it will ease at least some of this burden from her.
What I have learned in the past 5 years since Haley’s diagnosis is that for most there are no silver bullets.

No silver bullets but plenty of lessons. I am learning. I have learned…

That legal medicines are far more harmful than an illegal plant.

That I have a voice even if I’m sometimes too weak to use it.

That Haley is never too young to self advocate.

That insurance companies are evil.
That doctors and their opinions are important but not more so than yours.
That I can break down and it’s ok.
That I can be vulnerable and open and lose people because of that but that the right people will step up.
That the ones you think will be there won’t, but others will surprise the hell out of you.

That there is no straight path and no one else is going to forge it for you.
That no one minds if my child gets high on a little white pill but everyone wants to know if she’ll be high on a plant.
That my child and her struggle are not a burden. I can’t bring myself to call it a blessing but nothing about her is a burden.

That hope can be hard to find on the darkest days but it is always there. I can find it in the light of her smile or sparkle in her eye or the way she wraps her arm around my neck in a headlock telling me she loves me without needing words.
Her love is my silver bullet. And the people who surround us and support us and encourage us are my hope for a better, brighter day.
The sun will come out tomorrow, but it’s here today as well. Don’t forget to notice it.

I call a club meeting…

*In a whisper* “Meet me under the slide. I call a club meeting.” Or since we’re “well adjusted” adults maybe in the wine cellar. Code word for entry: diagnosis.


Welcome to the club. It’s not the kind of club that you seek an invitation to. It’s one that you become inducted into in a haze of sleepless sorrow, sometimes a low wail or high pitched keen. Despair never sounds the same when it emanates from different people. Words of a diagnosis or sometimes just the search for one is your orientation. But you’re part of our club now. The special needs parent club.

We all have different stories, different beginnings, middles and ends, but we weave enough similarities to bind us together. It doesn’t matter if your code word is autism, epilepsy, mitochondrial disorder, diabetes, developmental delay. We’re all still walking different paths of the same road, tripping along sticks and stones and broken hearts along the way.
And it’s ok if you balk. If you are in denial. If you’re not ready to be one of us. We weren’t ready either in the moment that we heard the words that would alter our lives. But we’ll sit next to you. We’ll tap out messages on a keyboard if you’re far away, or hold your hand if you break down at the park or over coffee. We’ll hand you a tissue and we’ll grieve together. We’ll share your tears and ours will taste of the same salty fear.
We’ll also bust out the Pom Poms and megaphones when you get good news or your child defies their limits. We’ll cry tears of joy for children we’ve never met because we’re so dang proud for them. For you. And we’ll look at our own children with renewed hope.

We’ll encourage you and remind you- You’re doing a good job Mama. You got this. Not only CAN you do this, you ARE doing this, and doing a dang good job.
No no. Of course you don’t think so. Of course you feel like you’re hanging on by a thread, or maybe you’ve let go. We all do. But you are doing so much more than you’re giving yourself credit for.

So we are a club, one you don’t think you want to join until you realize, like the Holland poem that a million and one friends sent you, though this wasn’t your intended destination there are good people here. People who get it. (There are assholes here too. Being a SN parent doesn’t instantly make someone a good person. But hopefully they come around. Otherwise they’re relegated to a corner table at the back. Like Baby. We do put Baby in the corner.)
But. You’ll see, you’ll find a place here.

We’ve learned that the small things are never small. We’ve learned not to save things for a special occasion. We’ve learned that life is the special occasion and it is fragile and short and health can’t be taken for granted. Neither can words. We’ve learned to communicate without words. We’ve learned truly to love unconditionally. We’ve learned the value of life. We’ve learned how to not give up or to give up briefly but then get back up. We’ve seen the struggles of meltdowns and tube feeds and wheelchair shopping and insurance hell and dear God not that ER again and the best nurses on the floor and can the neuropsychologist really be booking 6 months out and I did CPR on my child and contentious IEP meetings and the constant feeling of defending your child’s worth and hell NO I don’t accept that this is good enough and the guilt of am I doing enough and oh no I double booked ABA and OT and I’m drowning in my to do list but I’m too damn sad to get off this couch to do any of it and no I haven’t showered in 3 days and someone order pizza for dinner again, yes I know we just had it last night and and and…
Welcome. It’s not all pain, it’s not all joy but whatever it is in this moment we are unequivocally here for you. In pajamas with unbrushed hair, but here.

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.

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.


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.