Cancer · Chemo mom · Childhood Cancer · children · Histiocytosis · liver disease · Motherhood · Parenting · pediatric cancer · PTSD

PTSD for Parents of Children with Chronic Illnesses.

This $hi+ is real, people.  It’s real.  And this one was a hard one to write.  Not because I didn’t want to put it out there, cause I’m not ashamed.  It happened to me.  It wasn’t something that I chose.  It was hard to write because I had a hard couple of days with this monster, and I didn’t want to end up crying again because I was writing this.  But oh well…  cry I did.   Drank coffee, ate dark chocolate, and cried a little.  Because I couldn’t help it.  It’s been a hard couple of weeks for no particular reason other than I have PTSD and sometimes it rears it’s ugly head and sometimes it goes away for weeks at a time.  That is the nature of the beast.

The background:  My oldest was born with cancer.  She has permanent long term liver damage and an enlarged spleen.  She nearly died a number of times.  I have held her as she was covered in her own blood a couple of times.  I have spent months arguing with doctors and nurses and professions about her treatment and the long term outcomes and whether to light her up like a day-glow light again because they wanted another scan.   I spent months “sleeping” on a pull out “bed” and a blow up mattress on the floor of a hospital, being woken up every two hours for vitals and diaper changes.  I have learned to gauge her health by her diapers, her vomit, every kind of bodily fluid you can think of.  I have held her while she was in so much pain that she cried until she literally ran out of tears, and then she just vocally sobbed in my arms, falling asleep exhausted, still crying sounds in her sleep.   And I am damaged from it.

For months I would wake up in a cold sweat nearly nightly, having to check to make sure she was still breathing.  I had to call her daycare (when she was still in daycare, the schools won’t tolerate it near as much, as I’ve come to discover) multiple times a day just to see how she was doing once she was finally cleared to go back to daycare.   I am paranoid about people around her to this day.  A sniffle, a fever, anything makes me act like a person with Munchhausen syndrome.   But I have no choice.  I have PTSD from Sophie’s illness. And I’m not alone.

There have been 16 studies on parents of children with chronic illnesses, and the NIH has compiled them and done the numbers.   19.6% of mothers and 11.6% of fathers of children with chronic illness suffer from PTSD.  That’s HUGE, people.  Considering how many children have chronic illnesses in this country, ranging from liver disease, cancer, autism, any number of genetic disorders……  The number of us is HUGE.  I am absolutely NOT an expert at PTSD, but from what I have read and have been told, it can manifest in so many ways that it’s ridiculous, and often it’s a very personal manifestation.  My PTSD won’t look like yours.  So I’ll just tell you how it has made itself prevalent in my life, so that you know and understand that PTSD is not just flashbacks.  It is not just the violent outbursts that the idiots out in Hollywood make it out to be.  It is so much more, so much pain, so much terror, and tears.

It’s been 6 years since remission, 4 years since Sophie’s last GI bleed and corresponding endoscopies… I wake up at least once a month in a cold sweat.  It used to be nightly, but it has gotten a little better.  My nightmares… they run the gambit.  I could be right back there in the hospital room with her, the sound of the heart monitor beeping while the morphine is flowing, and the anxiety filling me because I’m waiting on a doctor to show up so I can get something changed for her.  Something that will save her life.  This dream varies.  Is it her needing blood?  Are we waiting on a scan? Am I waiting for the liver doctor to come and explain why her liver numbers are worse, rather than better?  Am I going to be told her liver won’t survive the chemo?  Am I going to be told the chemo isn’t working again?  These are the worst.  But they aren’t the only dreams that pull from my PTSD.

I dream sometimes of other things.  Always the same tone.  Sophie is hurt.  Sophie is dying.  There is nothing I can do about it.  I could have, at some point done something to stop it, but we didn’t know anything was going to go horribly wrong until it was too late and that screw up I failed to do in the past is going to cost my daughter her life.  It could be  car crash I somehow caused and the only person hurt is Sophie.  The other two kids are good.  Dan and I are fine.  Not Sophie.  It could be a boat sinking and they find everyone but her.   The boat ride was my idea.  I put her in the car going to the grocery store.

It’s always horrible  It’s always morbid.  I always wake up and go looking for her.  Sometimes I crawl into bed with her and just hold her.  Sometime I just stand in her doorway with tears on my face.  But I never go back to sleep afterwards.  If it’s 12:20 a.m. or 4 a.m.  I stare at the wall.  I find a book.  I sit in the living room and cry.  I have to wait for my heart to find a normal beat, to be able to breathe again.  And God forbid it be allergy season, my asthma kicks in and the inhaler becomes my friend.

I feel like a horrible mother for having these dreams, cause what mother thinks of these horrible things happening to their child?  What kind of a mother am I to have these images in my mind?  The dreams have become less frequent.  They are once a month now instead of at least twice a week.  But they happen still.  I had a car accident one last week.  Dan tried to stop it, but he couldn’t.  Sophie took her seat belt off trying to help, and when the crash happened, everyone else was okay.  Not Sophie.  And I put her in the car.  It was my idea.

And nightmares aren’t it.  Reading stories of children with cancer leave me in tears.  Reading studies about her cancer gives me a racing heart and the shakes.  Talking to mothers in the same boat that I was in before…  reading about the struggles of their children.  That will lead to a panic attack.  Heart racing.  Memories of the sounds of that horrible heart monitor ringing in my head like one of those songs you can’t make go away.

Driving down the street and seeing a car wreck that just happened, watching a mother lean over the back of the front seat to her child as EMS is stabilizing that little kid in the back seat for transport.   Tears, sobbing in the front seat of my car as I drive past in the impossibly slow traffic.  This happened yesterday.  I had to call Dan to calm down.  Sophie was in the back seat thinking her mommy had gone nuts.  As I drove past, I saw the look of terror on that mother’s face as she leaned over the back of the front seat to her child.  The look where her brain is trying to stay calm in front of her child to give that child some reassurance, but her eyes are asking God if her little one is going to be okay. I’ve made that face.  The smile that was more grimace than smile.  The tears you didn’t know were running down your cheeks until you touched the wetness after the doctors took you baby away to do whatever they were going to do.  I know the kid was likely okay, he or she was awake as we drove by and the car was empty and the mom was still on scene when Dan drove by about 30 minutes later on the way to get dinner.  That mother wouldn’t have let them take her child if the child wasn’t okay.  But at the moment, my heart wrenched open and I wanted to curl into a ball and sob.  PTSD sucked me in to a dark place again. I was okay by the time I got home, but GOD I hate that place.  And I hate that I go there in front of my kids.

It happens when the helicopters at the hospital take off within earshot.  It happens when I see a rash on any of the kids’ skin that I can’t explain.  It happens when there’s mucus in Vivi’s diapers cause she has a cold.   It happens far too often and far too strongly to just be mommy being worried.

It’s not something I can stop.   Sometimes I slide back in time and relive the pain.  Sometimes I stare at my kids and wonder if it’s still there, hiding, waiting to strike again, leading me to want to check them from the tip of their hairs to their little tiny toes.  Sometimes it just leaves me shaking and scared and sobbing.   It’s not always the same thing.  It’s not always flashbacks or insomnia or panic attacks or outbursts.  It’s a mix of so many things.

It has turned me into a paranoid person.  I’m scared of diseases, rashes, the wrong food, scratches, boo boos, car accidents, my kids playing outside, my kids playing at the playground or going to their friends’ houses or anything other than them sitting in front of me with books in their hands or snuggling in my arms.   It’s not good for their development.  I GET that.  It’s not good for my sanity or my stomach lining.   I KNOW!  IT has messed with my my recall of things.  It makes me short and yes I have outbursts from it, but not violent.  More irrational (NO my kid can’t go there) responses to questions.  It makes me worry about Vivi walking (because Sophie broken her leg when she slipped on a crayon after first learning to walk due to her weak bones.)   It makes me worry about Archer playing in the playground at daycare (because of the bacteria that can be found in soil that Sophie couldn’t have fought off when she was on chemo.)  It has broken me. I.Am.Broken.

And when I say it makes me scared, I’m not talking about being scared like you are scared of being held up on the street.  It’s irrational fear.  Controlling, freezing fear.  It makes me act irrationally and stupidly.  It makes me short with some people who don’t get it or who say something about how my kid “is just fine.”  Shut up, I KNOW that.  My brain isn’t working.  Leave me alone.  Stop looking at me as if I’m crazy.  Stop acting like I’m an idiot.  I’m NOT.  I’ve been conditioned by cancer and liver disease, and until and unless you’ve been where I am, YOU HAVE NO RIGHT TO JUDGE!

So yeah, PTSD in parents of children with chronic illness.  This $hi+ is real.   If you are suffering from it, know you aren’t alone.  What you are feeling is totally real, and it’s okay.  It’s legitimate.  You aren’t crazy.  You aren’t an idiot.  And if you are friends with or work with a mom or dad of a child with chronic illness, please have patience with us.  We are tired.  Exhausted, actually.  We don’t sleep well.  Everything scares us.  We are scared of things that most people are okay with.  We are hurting and can’t show it because God forbid you show weakness in the professional workplace.  So please, give us time and space if we need it.  A hug if we are crying.  And no judgement.  That’s all we need.

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14 thoughts on “PTSD for Parents of Children with Chronic Illnesses.

  1. I have had a similar experience, my son was 5 months old…and took ten years to get ober his cancer….he is 23 now and has just had Hodgkins Lymphoma also. The fear that gripped me when we were told he had cancer again was undescribable….I was terrified…I couldnt let him out of my sight…and if he went out I would find silly reasons to ring him….just to hear his voice..I have the same nightmares…and have the same thoughts, I have joined all sorts of cancer groups on facebook, but cant bring myself to read the posts most of the time…I find myself in floods of tears. they featured his cancer on an episode of House once, I recorded it, but I cant watch it…it just makes me cry so much..thank you so much for sharing this…..it means a lot to know I am not alone xxx

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  2. My son was dx with AML when he was 4, relapsed at 5 bmt just before he turned 6. He is now 3 months from turning 10 and is doing great except he has some heart issues from chemo. I find what has helped me deal with the PTSD is to talk about our experience with my friends and family. I will think Im doing really well and have finally moved beyond that fear. Then WHAM back in the trenches. Always worse when approaching check up time. But I have the dreams (usually involving his death) I have the irrational emotional out bursts (usually anger) and then theres the fear well terror really. Illness, fever, crowded places with him, watching him play football. Everyday I have to force myself to allow him to be a normal kid, everyday I live in terror.

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  3. I have wondered if I have PTSD as well but I thought no that is silly. Reading this I really believe I probably do. My daughter doesn’t have a chronic illness but when she was 5 she pulled a pot of rolling boil water off the stove on to herself. I grabbed her clothes and yanked them off and standing in my kitchen watched her skin start peeling and rolling off her body. My sons ran to get my husband because I was literally frozen looking at her little face and seeing what was happening to her body. I will NEVER EVER forget that as long as I live. We spent 34 days on the burn unit and she had 6 skin graft surgeries( not to mention all the baths and harvests for skin to cover the 33% of her body). On day 3 she went unresponsive and we watched as they pumped her full of meds to keep her from going into cardiac arrest. My heart stopped and even though I didn’t know exactly what was happening to her I thought in that moment that I was losing my baby(she is a triplet and my only girl). I have gained about 100lbs starting when we got home through the rubs and therapy and baths I had to give. I still have moments where I am standing in that kitchen again seeing her skin rolling off and I go to the bathroom and just cry. I have dreams about it and I still feel like I am a horrible mother because I shouldn’t have put that candy so close to the stove so she wouldn’t have climbed in the chair. I should have just let her have one piece what would it hurt. I should have caught her so that it got me instead of her(I tried to catch her but missed). Because of me she is scarred for LIFE. It has changed me in many ways and how I view myself and grade myself as a mom. Even though I know it was only an “accident” and that I would trade places with her if I could have. I haven’t been able to “get over it” as everyone says. My JOB as their mom is to protect them and take care of them and I failed. Thanks for writing this…maybe it is time that I really see someone and not just a pastor from someone’s church.

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    1. Oh hunny, Totally with you on this. Yeah, I would say go see someone with this. I think maybe they should expand the study to parents of children who have near death experiences or who have been severely injured or permanently injured. Cause that would have totally destroyed me too. You aren’t alone. ❤ Go talk to someone. It helps to talk about it.

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  4. This is very very true. 4 years ago I could drive on major highways, no problems at all. Even drove from NC to Disney one year for my twins Cheerleading Championships, no worries. 1 mo after my son Miguel was diagnosed with cancer at 20 months, I started getting light headed while driving down I-40. He and his newborn baby sister were in the backseat..she was only 3 days old at diagnosis. Each time I had to drive the hour to Duke it got worse to the point I had to pull over one day and let hubby drive as I thought I would pass out. To this day I cannot drive on major highways anymore. I have severe panic attacks. I don’t even like being a passenger while hubby is driving on the highway, I end up a hysterical mess. It’s just moving too fast, and the panic that someone will hit and kill us sits heavy on me every time. I have TRIED over and over to get back on the highway, to shake it off..after all if I get a job after my daughter starts Kindergarten and I have to use a highway to access it what will I do? Guess pull out Mapquest and find back roads. This is a crippling disorder, and we spend so much time taking care of our sick children and their siblings who are suffering as well that we ignore what is happening to us. PTSD is very real, and very scary. You hit home when you said your PTSD won’t be like others. Mine manifested on the highway I think as I grew up with a Mother who used to panic as my Dad drove down the highway when I was a kid, and also the drive to Duke was always on the highway, so I was driving to poison, uncertainty, God knows what else was in my subconscious. I have another Cancer Mommie friend who cannot be in enclosed spaces like movie theaters. It all manifests differently, but is still crippling and unnerving. God bless you for saying what we all feel and bringing awareness to this!

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    1. I have a similar aversion to movie theaters, and many public places. Since Sophie got sick, I watch the news and any massacre or school shooting or anything where children are hurt, and I keep thinking, “my babies….”

      So yeah, I get it. Total mess.
      But we’re getting through it. One day at a time. That’s what I tell myself. Today might suck, but tomorrow will be good.

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  5. I struggle with trying to get family (aunts, uncles, cousins, sisters) to understand the PTSD and why I check my son for bruises every single day. That’s what cancer does. It’s brutal. 16 months off treatment and the paranoia has eased up, but I don’t believe it will ever truly go away.

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    1. 7 years into remission, 4.5 off chemo. The paranoia is still here. Wish I could say it’s gone. And I think it’s different for everyone, but for me, it’s stayed.

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  6. Last April, my then 10 month old daughter was diagnosed with Hepatoblastoma, pediatric liver cancer. 9 cycles of chemo and a liver transplant later, I truly believe I have PTSD. I have resisted getting professional help (I have no idea why), and have taken solice in reading others journeys. Thank you for sharing yours.

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