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.

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. 

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.

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.

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 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.)

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.

I am no hero…

1.Please stop calling me strong. I am not strong. I can’t make it 24 hours without crying. I can’t fake a smile convincingly. Not only am I not strong, I’m not even strong enough to make a pretense of being strong. Nor do I want to have to. I value authentic pain over false pride any day.

2.Please don’t ask me a question that you don’t want to know the answer to. I broke down in public when I ran into someone I hadn’t seen in awhile and they asked how Haley was doing. I never know if people want the honest answer or the polite answer. I never know which to use. It’s like an internal debate every time I have to answer this seemingly innocuous question.

3.Please, for the love of all things holy, please don’t tell me everything happens for a reason. There is no reason compelling enough to watch my daughter endure this suffering on a daily basis. None. Nada. Zilch.

4.Please stop saying God only gives us what we can handle. I’m quite certain most of us have at one point or another felt that he/she waaaaaay overestimated our abilities. I just happen to live in a perpetual state of that.

5.Please stop telling me miracles happen every day. I don’t want to acknowledge that the only thing left is a miracle. Even though it’s true. Hearing that is like a knife wound to my heart- Every. Single. Time.

6. Please stop saying that you don’t know how I do it. Frankly, you would do it too. The thing about epilepsy is that we didn’t get a choice.

7.Please don’t give up on me. I know some days I can’t answer the phone because the tears in my voice are too thick to speak through. Please call anyway. I know I’m juggling a million appointments and obligations and holy cow! Christmas is in a few weeks! Please ask me out for coffee anyway.

8.Please don’t take it personally if I can’t answer your questions or if I answer them too thoroughly. Sometimes I can’t talk or think about anything other than Haley and I’m happy to expound on everything I think I know about epilepsy and service dogs and cannabis. And other days I feel like if I have to answer the same question I’ve answered a million times again my head will explode. If I can’t give you the answer you are looking for, feel free to ask me again another time.

9.Please don’t ask what I need or offer to help me. My answer will always be nothing/no thank you. If you see I need help with something please go ahead and do it. I will be immensely embarrassed that you saw my weakness but I will be humbly and incredibly grateful too. Other people are wonderfully able to accept and ask for help. I am not one of those highly evolved creatures.

The cliches and the platitudes, they are harder than silence. Silence at least conveys the gravity of Haley’s struggles. Let silence be your answer when there is nothing to say. I promise I’m ok with that. And don’t be surprised if someday you ask an innocent How are you? And I can’t hold it together enough to answer. I am broken right now. I’m held together with tape because I’m too tired to find glue and the cracks keep getting wider. And every day I resolve to be better, to do better, to shake the sorrow. And every day I fail a little more.

Every day that Haley lives, I celebrate that she’s alive while simultaneously mourning that she’s had to live one more day without access to the medicine that could be her miracle. After all, miracles happen right? (See #5)

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

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

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

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

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