You are nine. We are lying in bed. My hand is on your hot belly.
You have a fever. Again. It only happens a couple of times a year, but when it does we do not sleep. I do not sleep. I am transported back in time to the hardest chapter of my life. No this isn't my story, but you are so over the old business that now it is. You've moved on. You're healthy. Strong. You're free of worry. Me? I'm drowning in it.
You had a fever then, too. But you know that. You can tell by the look in our eyes when you have a fever even now.
That time is my shadow. It follows me and haunts my dreams and appears every time you have a fever. Every. Time. Like the bad guy in a scary story who pops up again at the end, just when you think everyone is safe.
It's the darkest of bottomless pits that all parents imagine but that few stare into the open mouth of. We grab you and hold on tight and pull you back from the edge. The precipice. The black hole. Once you've looked in there, how do you shake it off? How do I shake it off?
You were two.
You were with Pete. You were napping, together. (Thank God.)
By the time I got the call and raced to the hospital you were medicated, unconscious, and hooked to several machines. You were wearing your blue pajamas. The ones with the line drawings of little airplanes all over them. They had cut the top off and it lay on the counter beside the bed you were laying on. Those were my favorite jammies. It must be serious if they cut up my favorite pajamas, I thought. (Once you came home from the hospital I threw the bottoms away. I couldn't bare to look at them anymore because they brought back that awful day.) You looked so small. I talked to you, but you didn't hear me.
You were still seizing. They gave you more meds and your body seemed to stop it's robotic short-circut movements.
They wouldn't let me get on the helicopter with you.
It was against policy. I pushed but they wouldn't budge. So you went alone. My God. You'd never been apart from us before, much less like this. So Pete left while the Flight for Life helicopter was on its way. (Let him get to the hospital first and be there when Sage lands, I prayed.)
Just before they put you on the helicopter I noticed the tip of your tongue between your teeth, twitching. We were outside of the hospital, on the helicopter pad in the wind and the noise. He's still seizing – I said and they pumped more meds into you and loaded you inside, the door closing behind. I didn't watch the helicopter take off. I ran as fast as I could to my car, praying to all the gods I knew that your papa had already arrived in the hospital and would be there when you landed. I hoped to God that you would still be there when they landed. I drove home and hastily packed bags for the three of us, not knowing when we'd come home. I called my best friend and asked her to take care of the dog. I was taking rescue remedy and doing deep breathing and trying to be a rock. I didn't even cry. (Not for days.) Because that would acknowledge what I so feared.
And then came the longest drive of my life. An hour and a half to the hospital where they had specialists. Neurologists. A helicopter pad on the roof. I think of that drive every time someone races past me on the road. I get out of their way thinking: Who knows. Maybe they're chasing a helicopter with their baby on it.
I remember bringing you home a week later. You couldn't walk. You couldn't talk. We wondered when or if you would return to normal. When or if life would return to normal.
For a year we checked you ever three minutes while you slept if we weren't sleeping beside you. Just in case it happened again. Dear God let it not happen again.
You've had two seizures since. "Normal" seizures. Three-minute (not three-hour) seizures. But still. My heart stops. It is the stuff of my worst dreams. And every time the god-damn fever. You're too old for "typical febrile seizure". But then, there was never anything typical about yours. What's to stop it from happening again?
Seven years. It's been seven years since we stared into the abyss. That story is over. Right? But how do I shake it? Christ. I'm ready to shake it. How to I thank that story for the lessons learned and then close the door and walk away?
You still have a fever tonight. And so I'll sleep with my hand on your belly again. If I sleep at all.
Rachel, that’s terrifying. I hope your son rests and heals while you keep your constant mother-vigil. I will pray for you tonight.
Tears are now rolling down my face. Strong mama you are, you will not get over it but rather fight back with all the strength and love in your heart until you no longer let it control you and it becomes the fabric that makes you stronger. May he rest well tonight and be well in the morning. Such a lucky boy to have you.
I recall when that happened! It was a very scary time for all. Rest easy mama he is strong, but I don’t blame you for keeping a hand on him. Get better soon Sage.
I’ve never done this. I don’t envy you. I wanted you to know that you are in someone’s thoughts and prayers tonight. I wish I could say more to help, but the fact is, I don’t think you ever do shake things like that. They just become part of you and somehow, someway you learn to trust that they happened for a good reason. Even if you never know why. Hoping you’re little one mends quickly, and you get some rest and peace.
Tears. I can’t imagine.
love and light to you all, Rachel
Oh my God, so scary. I can’t even imagine. My little girl almost got hit by a car this year as I watched. I can’t shake that either. I barely let her cross the street alone and she is almost 8. Sending love.
I’m sorry you are having a hard night. I have PTSD from childhood trauma so I know what it’s like to be haunted by something. Just try to remember that this time is not that time. It’s hard. I’ll be thinking of you and hope your family is well soon.
As a mother, those feelings make up my worst nightmares. You are strong too mama. Hang in there. Your family is in my thoughts tonight.
I cried too. Because I have been there. My 7 yr old has recurrent brain inflammation, he has had it since he was 3. He gets lesions in his brain when he gets sick, he’s been hospitalized 4 times with it. I know that fear. It’s nauseating. I hope sage gets well soon, Rachel.
I have no words…..(((HUG)))
My prayers are with you tonight.
Rachel- The fear in this post is palpable. You have experienced one of a parent’s deepest fears of realizing just how thin the veneer of “everything’s okay” actually is. Things can be okay and then suddenly, they aren’t and it’s out of your hands.
I don’t have any words of wisdom.
I think every parent lives with this fear but for you and others that have lived it it is closer to the surface, recalled by a range of triggers like a smell or an image or in this case, a fever.
I think you are already doing the best antidote in that you live more intentionally than anyone I know. Everything from what you eat to how you live and parent. I looked through a lot of old posts this weekend looking for particular craft project instructions. It was overwhelming all the stuff you do and life you have created. Just like the fear is palpable in this post, the unconditional and deep love you have for your family and life is palpable in the others.
You recognized the fear and created a different life because of it. Yet you didn’t go off the deep end by preventing the kids from doing anything remotely dangerous (kitchen knives and horseback riding anyone?).
All any of us can do is try to do the best we can each day while knowing that tomorrow isn’t guaranteed for any of us. I hope Sage gets better soon and you all can get back your balance and rhythm.
All I can wish you is love and light, because as a mother I don’t know that you’ll ever truly find peace. My father went through roughly the same thing 20-some years ago with me. I, too, had a “typical” febrile seizure and was rushed to the hospitals and specialists from our log cabin home in the middle of nowhere. My mom was also thankfully sleeping next to me, but my dad was in Green Bay at a conference at the time…he was a police officer and ran red lights and siren all the way to Madison, and met the ambulance at the hospital. I cannot imagine the fear. I hope it eases in time for you, but I am sure if I ask my dad he would recall that feeling like it was yesterday himself. Arms around, friend.
Oh Rachel, we worry as momma’s. Until I had my Isaac I never really could relate to worry quite like this. But, I remember very well staying awake 4 nights in a row (two at home, two in the hospital) listening and feeling my 8 week old baby breath as his little body fought off RSV. I was very stern with the nurses that he would sleep in my chest and not that cold hospital crib. They finally relented after they figured out I wasn’t going to give up. He slept and nursed. I was wide awake listening and watching his every breath along with the lights and beeping of the monitor. He slept, I prayed – lots, that his little body would stay strong – as the nurses had told me they had a number of RSV babies there his age on respirators. God, please no. He was strong. He slept and nursed and healed. Today he’s a strong, feisty, loud almost two year old. But everytime he gets a cold I listen to him breath, listen for any slight rattle in his lungs – remembering that what turned out to be RSV started as what I thought was just a cold. Everytime he’s been fine, but, yes I worry, remembering my tiny baby in the hospital on oxygen. I will pray for your heart tonight. And yes, sage will be fine.
Goodness Rachel what an awful memory. When my daughter (in the picture below) was a small infant she got rsv and for weeks would cough and do what the call reactive breathing. I would lie awake and watch her chest gasp for air…. I didn’t sleep for weeks. I remember praying to all the gods too. Oh please let this girl grow up big and strong… let her dance in the sun and laugh and smile. Let her lungs heal… let her stay right here with us. I can’t even imagine walking in those shoes of yours…. please know I just said the same prayer for Sage. And one for you too that your mama heart be healed from this. With love ~ Stephinie
I have no words but am in awe of your strength. I hope he gets well soon. xo m.
The thing about becoming a mother is that you suddenly feel the pain and worry that other mothers feel. And ‘other mother’s children’ are more than that, they are our children in this precious world. So, you’re not alone. And, just think of all those times you’ve slept with Sage helping him to heal and get well through fevers and falls, and the ups and downs of growing up… This is a lifetime of strength you’re nurturing- for yourself and for him. All of these moments are precious. Sometimes scary, and sometimes brilliant. Thanks for sharing.
Thanks for sharing Rachel, it’s such a scary abyss.
Today I had a pain in a bub, and then the doctor said that I have a ball and that maybe it’s the bad thing, or maybe just some infection, we don’t know, I hope the best, and still, it’s not my beautiful baby, but I can not be for him, that’s my second big fear.
Hugs.
Thinking of you all tonight. Hoping S feels better soon and that the knot in your stomach eases!
This reminds me so much of the fear I have whenever one of my girls is sick. The way you say it here images my feelings precisely. It is this way I must say whether you have had a child go to the brink and return or not return, I say this from personal experience. I love how you say this because it does feel like something I must move through in order to be who I desire in their sickness and health really. I hope this message isn’t too cryptic to understand!
Nothing is scarier than a sick baby… one who you’re not sure is going to make it. I can hardly even think on my own abyss without a panic attack. Waiting for that ambulance…thinking they’ll never make it in time.
When my kids get a cold, I don’t sleep. I listen. I feel. I look.
We mothers, what other choice do we have?
I don’t know how much longer you’ll have to fear. I’m sorry. I haven’t found a way out yet.
Sending thoughts and best wishes…
Another mom who recognizes your story; my daughter has a chronic liver illness. We had that rush to hospitals etc too, days fearing for her life, the very real option to lose her before she turns 18.
I hope Sage had a good night and that the fever is coming down. How long has it been since the last seizure?
How to shake the fear? I don’t know either… That fear, it nests inside you and flames up when something happens to your baby. Ofcourse; all moms have that in some way. Being concerned about your child. But with children with illnesses (in the past or in the present) that healthy concern has gotten into overdrive. I don’t know how to get it to ‘normal’ again, I’m not even sure it will ever go away….
Maybe the lesson is to accept it. If you can’t beat it, join it. I try to integrate the fears in my life. To keep an eye on the ‘normality’ of it. With normal things, it should behave normal. With extraordinary things, it should hit overdrive again. The wisdom lies in recognizing the difference. (I can’t do it alone, I pay a therapist to help me find normality again.)
Oh my god that’s so terrible. I cried reading your sotry. The worst fear of every parent. Luckily everythings ok now with your boy.
I’ve been blessed with a healthy 2 years old who has never been seriously ill. Still, i have fears like this. i think the fear comes with the love. you can’t love your child with all your heart without fearing for their safety, at least on some level. I hope in time you can draw strength from the past trauma, and see how far you guys have come. And thank goodness for co-sleeping!!!
very beautifully written. Wish there was a “like” button, haha!
Rachel, my heart is with you. I have been this route (although not with the same condition) with my son. I knew exactly the feeling you describe – the one about knowing it’s over . . . but not being able to tell the awful feeling in your heart that it is. I have no words of wisdom, except that I understand that vigil of waiting and praying until it’s over.
Wishes will be a part …..
Wishes for the future will be soon arrive from me again…
We are thinking of you too, strong thoughts for both of you, all the way from over here…
I came for comfort today – I have a social worker coming tomorrow to inspect me – my baby fell and fractured his skull, they must check it was not me who did it. I sit here thinking over all the parenting… I held this baby all day and all night until he was 8 months old – I love him so – I nearly lost him and I he is fine – I feel so weak and vulnerable – all my judgements undermined – I let my baby fall and then thought he was all right– and he is — but not without harm… it is so typical of this society, I need support and encouragement and I am being grilled and doubted. My baby is not brain damaged and he will be all right. Your blog has literally changed my life and I have been meaning to write to you for ages to thank you. We all have dark moments and I am very grateful that my son will be ok. As for the social worker – I did not do it – what more can I say.
Oh mama. Tears. So real. So visceral.
I remember attending a dear friend’s blessingway when my oldest daughter was 3 weeks old. She lay in my arms nursing, as a sage crone explained, “You can never know love until you have worried/loved/prayed over a sick child.” As I held my brand new little one, I thought I understood. But I didn’t. Not until that terrible sickness came and she couldn’t breathe. Then and now I know.
Damnit, Jen. You werent supposed to read that now. Its too raw over there this week. Sending love to you and your family. xoxo Rachel
Tears rolling down my face. Light, love, rest and prayers for you. Thank you for sharing.
Thank you for sharing. I’m curious as to what you think caused the siezures. I have a son who had autism and we’ve relieved him of his symptoms through gut healing (GAPS diet). he had very fast high fevers too but never siezures.
I know what you mean about the fear never leaving you. I hope Sage feels better soon.
Jen,
Thanks, also for being there the last time the shit went down. When you saw the ambulance. From my heart. THANK YOU. xo
Hi Rachel,
I don’t know if this is out of line, and forgive me if it is. I just read this post and know this trauma response intimately. So painful and so insistent. One way that I have found very helpful personally and professionally is EMDR. It is a type of brief therapy that uses eye movements to reprocess and heal the trauma response that has you in fear when you are triggered again. I wish we lived closer because I am an EMDR therapist, but I am sure that there are EMDR therapists nearby that you could see. It would only take a few sessions and while the memories would still be there, you would not experience the same intense response to the memories. If you are interested, you can find a therapist in your area at EMDRIA.ORG. There are EMDR exercises that you can do at home to self soothe if therapy is not available or desired. If you want more information please give me a call 310-402-7775.
Hugs to you,
Lauren
Peace to you and your family, dear Rachel. Thinking of you.
No words. A hug.
Thank you so much, old friend. I will do some searching about it and reach out if I can’t find anyone nearby. I think if its similar to EFT someone else suggested it. That suggestion spurred this post because I told her how ready Pete and I both are to be done with this story that isn’t relevant anymore. Thank you! Big hugs, Rachel
Oh, Dayle. This is HUGE. And more detail than I went into in the post. However, Sage was also on the spectrum when he had his first seizure. The terrible one. When we asked the neurologist how to insure it never happened again they said “We can’t tell you that. But after the next one we’ll better know how to medicate him.” “There won’t be another one.” I told him. We went to a naturapathic physician who ID’d food sensitivities. We pulled initially rice and later other foods that were issues, and not only did he not have another seizure, but all of his spectrum-like behavior went away. Food, as you know, is the most powerful of medicine. I think the seizures come when the system is overloaded. Overstim, toxins, illness, food sensitivities, everything. It’s cumulative. And the short out. That’s my theory anyway. Blessings to you and your family. You are on an amazingly healing path. xo
Big hug, Nicola. I hope things went alright and you are finding the support you so need and deserve.
Rachel
Thank you so…
Oh, mama. Blessings. And hugs… Thanks for your words.
I’ve been thinking of you so much since I read this. Sending blessings, mama. I hope everything is okay in your world. ~ Rachel
I remember vividly seeing him in the hospital, in such distress. I forget who said to him that uncle Joe was there… but I’ll never forget how he repeated my name and turned to see me. Broke my heart, but thank God things turned out ok.
Yes. Such a scary time. Thanks for being there, Joe. And for remembering it so well. Love, Rachel
A few years later…I’m reading tonight after your post on FB. I can really relate to those fears…I still live them each and every day. Almost five years now I’ve been my child’s life support machine. 24 hours a day, 7 days a week. My husband and I switch off at night, every 2 hours. My 6 yr old was dx’d with Type 1 Diabetes when she was 2 years old. Life has been a roller coaster of emotions, questions, uncertainties and worst fears….and also newfound strength, courage, optimism, and love. Ahhhh, the power of love. What a mama won’t do/feel/sacrifice for her beloved babe! So, yes, I also pull over when a car is motoring past me down the road doing mock chicken! My husband was that vehicle chasing me and my daughter in the ambulance. After four years, I believe you have more peace and answers in your life…..So much love and beauty to you, Rachel.
xo Jules
Parenting is no light weight to carry. Thinking of you, mama.