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. )
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.