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SN-TSD: Special Needs Traumatic Stress Disorder

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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.

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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.

41 thoughts on “SN-TSD: Special Needs Traumatic Stress Disorder”

  1. I just love you.

    Your words are beautiful. Since scott died we have been living in a bubble with Ted. I just said to Bill last night, we can do this. We can make this ocean of pain back into a functioning family. It will never feel normal again but it will be our new normal. Thank you for putting into words what that all felt like for you. You are exceedingly brave and beautiful in that bravery. I’ve never been able to string together more than a few sentences about Ted or Scott’s worst moments. Please, please, please forgive yourself the things you didn’t know. As soon as you knew better, you did better. NEVER forget that.

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  2. Wow…what a powerful post!!! How you describe seeing one’s child in a medically induced coma as a last resort effort is spot on. We experienced a similar horror (as you know) with our daughter. Yesterday, we were able to celebrate her birthday. While our life journey doesn’t allow her to celebrate as a “typical” teenager would on their birthday, we are blessed to be able to celebrate everyday that we have together.

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  3. Thanks for sharing your pain. It is so heartbreaking. I wish the whole world could read this and understand that there is a plant that can help to avoid all this sorrow.

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    1. Thank you!! Me too! It’s easy to look at the number of pharmaceuticals and say these kids have options but 33% of them are unable to control their seizures with current treatments and more are forced to live with debilitating side effects from the drugs. All of which could be alleviated with access to a plant.

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  4. Thank you so much for posting this. I had no idea that i had ptsd until i had my last child and had to see a therapist for severe post partum depression. I told her about my oldest daughter and she just looked at me and said, you have ptsd! I was told by a family member that i need to get over it, that i shouldn’t dwell on the past. At that moment i went back into hiding my thoughts and feelings. ..people just don’t understand! Thank you for sharing.

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    1. It’s a very difficult thing to accept and even harder for those who don’t live it to understand.
      I’m so sorry that your family member wasn’t more understanding and supportive. Glad you found your way here where we definitely “get it”. Hugs.

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  5. I was reminded of one of my favorite quotes–by Hemingway, “Everyone is broken by life, afterward many are strong in the broken places.” I have a sense that you are one of those people. All that you have been through and to be able to identify it and express it is very powerful and moving. Thanks for your writing!

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    1. Thank you so much for your kind words. It’s easy to be broken. It’s harder to put the pieces back together. But if we don’t at least try where would that leave us?

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  7. WOW!!!! Thank you so much for this article! I understand your life completely because I too suffer from PTSD. Our daughter Erin is 16 and because of a rare syndrome also suffers from hard to control seizures. You can read all about her story at http://www.baraitserwintersyndrome.com
    Thanks again! Looking forward to reading lots more – in my spare time LOL

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  8. Your post captures it perfectly. I, too, had PTSD after two-years fighting day in and day out with my daughter’s disease. The constant fear and terror is so difficult to describe. The doctors told me the children get past it, but the parents have to fight to remember normal again. It is a traumatic experience, heartbreaking. I’m so glad your story worked out well. We’re still fighting our battle, but your words have moved me to tears and I don’t feel so alone. Beautiful.

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  9. My daughter has a rare syndrome that she was born with and even though she has not ceased, your story is my story. You are right, there is no post. I really like an official term such as SN-TSD. Thanks so much.

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  10. Bless you for writing this article brave momma. My twenty-seven year old son had his first tonic-clonic seizure at age twenty-one, although it seems like a lifetime ago. Although we’d weathered seizures before, last February my husband and I experienced status with him for the first time when he seized from 5pm to 6am the next morning unrelentingly. It wasn’t the first time for him, as it happened while he and his younger brother were staying at his father’s house over the holidays a few years before. My ex-husband was a changed man afterwards… trips to the emergency room with chest pains in the middle of the night, debilitating insomnia, anxiety severe enough to require meds, and likewise our younger son had to drop classes at college that semester due to anxiety following their 36 hour ordeal. I didn’t fully understand at the time, but after enduring those thirteen hours, I’m a profoundly changed woman myself. In the days following the incident, it wasn’t entirely clear that our brilliant son hadn’t suffered brain damage, as to all appearances he had regressed by decades. It took some time for him to regain his normal brain function, and it was then that I came to understand the possibility of losing him without experiencing his actual death. The entire last year has been a blur of PTSD for me, and I’ve had to work very hard to reclaim any semblance of my former life. If not for my faith in God I would live everyday paralyzed by fear of the future and terrorized by my memories of the incident. As it is, it’s literally one breath at a time in a perpetual exercise of surrender. I know my son may die prematurely, and I see very clearly the ways in which his condition has robbed him of anything close to the kind of life other young men his age enjoy. Since he came of age he’s been unable to drive a car or hold a steady job, which of course makes it very difficult to socialize with other young people. I can only guess at the level of anxiety he himself faces as he attempts to do the most basic things, like take a shower when no one’s home, enter a crosswalk on a busy street or summon the courage talk to a pretty girl knowing that even that otherwise benign stress might trigger a seizure in him. It absolutely breaks my heart that my other three adult sons are pursuing their lives fully with fulfilling careers, friends and girlfriends and most importantly confidence, while their brother can only watch from the sidelines. As of today, I’m trying to choose to allow this trial to make me a better woman, a better mother and ultimately a more compassionate human being. That being said, I miss the old me… the one who didn’t know anything about epilepsy and lived in a bubble of ignorant bliss. Since I do know, and there’s no ‘not knowing’ for me now, I am deeply grateful for the opportunity to hear your story, and hopefully take courage from it.

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    1. Thank you for taking the time to share. There is nothing at all that compares to the fear of facing telling your child goodbye. Nothing.
      And I too miss the old me. Everything on our life is defined by “before” and “after”. For me I have to turn the pain into purpose. If I don’t then I have to face that she (and all of us) are enduring this for no reason. And I can’t do that. Can’t let it be for nothing.

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  11. Thank you so much for sharing your story. Your words are so eloquent and impactful. I am not a person who has had to personally deal with this in my life, but have been touched by many who have, and I pray that you all find peace, acceptance, and unconditional, nonjudgmental love from those who are around you. I’ll be sharing this on Facebook in the hopes that others understand at least a small piece of what the lives of the parents of special needs children can be. Stay strong, and know that you have the support and prayers of many — friends and strangers.

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  12. Wow. I am still crying from reading this. I had to stop twice. Only a mom who has had do the back away, as i call it, could understand. Rarely can one artoculate this feeling as well as you did. Thank you.

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    1. The back away. Yes! Exactly! That awful feeling that it’s completely out of your hands and control. The helplessness that rises like nausea. The hardest thing I’ve ever done was force myself to back away when all I wanted was to HELP her. Thank you. For reading even though it was difficult, and for sharing.

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  13. My daughter had a seizure at 18 months. Luckily, it was controlled and she is now 42 and pregnant with her third child. She was tested and poked and prodded at the time of her illness and other than pneumonia, nothing else was amiss. After reading your story, I realize how lucky we were. We were in the military at the time and at the mercy of a medical system where the quality was hit and miss. Luckily we were assigned to Andrews AFB and the Hospital was great!!

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    1. I’m so happy for her. And for you.
      To be fair many people with epilepsy are able to control their seizures with medication, diet or surgical options. However 33% cannot. That’s a huge population to be left without options. To be shrugged off by the medical community and counted as lost causes. Way too many.
      Thank you for reading and best of luck!

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  14. Thank you for your accurate depiction of a mother’s struggle for a sick child. The only comfort I give myself is that perhaps I would not be as grounded and sure of my path if I did not go through the doubts and giving in to the pressures of the medical, familial and social community. We hit the bottom but our building back from scratch was necessary to get to where we are today. You are reaching and teaching many out there as you were meant to do. And doing so in a very raw way that others will learn from your experiences. The world thanks you.

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  15. Pingback: Special Needs Traumatic Stress Disorder From the Website Seizing Hope | ragdollmummas

  16. Wow just wow,, you could not make this up,, as you have to live it to write it,, this is our and no doubt so many other mum,s and dad,s story out there,,, So so true in every way,, all our love xxxx

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  17. My daughter Barbara sent me the link to Haley’s story.. asked me to read it.. I’m certain it made her think of herself and her daughter.. Nova Leigh..They have both been through so very much in Nova’s short four years of life. For Barbara I know these past four years must seem like forty. Nova has intractable Epilepsy and Schizencephaly, seizures are certainly nothing new to them. They moved here to Colorado Springs from Austin a little over a year ago, and cannabis has certainly given Nova a better quality of life. I still watch my daughter go through unbearable moments.. long hospital stays and extreme fatigue, but I am forever amazed at her strength and her courage. And I will always be so amazed at Novas strength and courage as well. I cringe at myself whenever I feel beat down or discouraged with my every day problems..they are nothing compared to what my daughter and Nova have had to live through. I thank you for posting this writing.. I admire your heartfelt honesty and my thoughts go out to you..please know you are not alone..ever. And know that the world is a better place because of parents like you.. and beautiful little girls like Haley and NovaLeigh. God bless.

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  18. Pingback: Happy Epilepsy Awareness Month

  19. Reading this post for the first time from Allison’s blog and nodding my head, agreeing. Even after 21 years, I’m sorry to say that it never gets easier. Your words are raw and true and necessary.

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  21. What you’re describing isn’t “PTSD-like,” it’s PTSD. Period. PTSD develops after (post) experiencing a trauma. It’s very clear your daughter’s sudden illness was traumatic for you. Having recurring memories, flashbacks, fear, etc. is actually normal to those who suffer from PTSD. People with PTSD also experience sudden symptoms when triggered (like the fear/anxiety you feel when you hear sirens). PTSD is something you live with every day. It doesn’t just go away. Some people have PTSD forever.
    I work in mental health, am just about done with my Masters, and live with a man diagnosed with PTSD (my husband). This is something you should seek help about. You’ll always have worries (like any parent), but the fear and anxiety can be lessened with the right help.

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    1. I understand that it is PTSD as defined. I’m just saying that PTSD is not an accurate depiction. Because we aren’t post anything. It’s like asking a soldier to talk about their experiences while still on the battlefield. It can’t be done.
      I do have an outlet, many SN parents do, but it is a unique predicament to be coping with and working through these issues while still living them every day.

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  22. Thank you so much for sharing, I was literally sobbing throughout reading your eloquent post. My son suffered from intractable seizures also and I lived through some similar experiences. Never realized I have PTSD but I think I do for sure now! Thankfully after a hemispherectomy he hasn’t had a seizure, hasn’t had an ambulance ride, hasn’t been intubated, etc. for over 3 years. Anyway I’m so glad to know it’s not just me with the flashbacks and the nausea when I hear a siren.

    I hope and pray your daughter’s condition improves. Bless you for writing this!

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  23. Thank you so very much for eloquently describing how I feel at times. Every time a seizure occurs, I feel days ticked off of my life. There is definitely a “before” and an “after” me. I enjoyed reading the replies as well. We are not alone in this journey, although it is different for each of us. My son has suffered with intractable seizures for most of his 18 month life. I laugh at status epilepticus being defined as over 5 minutes. Try 2 hours. On a very, very positive note, my son, Brooks, has gone 38 days without a seizure and then two days of seizures and now we are going on 15!! The 38 was the longest since his initial diagnosis of Sturge Weber Syndrome at 2 months of age presenting with status. Thank you again. You are not only a gifted mother, but a gifted writer.
    Aimee

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  24. I feel like I am having PTSD just having read this! I could feel the raw emotions from you and my heart was pounding along with yours! I have 2 children with special needs (autism and down syndrome) and while we don’t deal with seizures, we do deal with meltdowns and very dangerous situations….believe me, I know some of what you have felt. I don’t know how you have survived it…..you have my admiration and my encouragement to continueto write more, as you are a gifted communicator.

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  25. Wow, this article hits home. Our daughter has separate medical issues but we spent endless nights in the picu, staring into our daughters eyes and not knowing what to do or how to help . Thank you so much for writing the article. There is a darkness that surrounds you after many days in the picu and a child who is ill. Replaying those days over and over again is torture at times.

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