If you haven’t experienced the sheer terror of your child having a seizure, consider yourself lucky. It ranks high on my list of personal tortures and I was hoping to escape this with Nico. After everything we’ve gone through with Ben we were hoping for a free pass on number two. But alas, Matt and I heard a strange sound coming from Nico’s room last night and we found him having a seizure in his crib. Enter heart-stopping, soul crushing terror with simultaneous massive amounts of adrenaline pumping through the veins of two shockingly calm parents firmly barking orders at each other.
Take off his sleep sack. Lay him on the ground. He’s going to be okay. He’s going to be okay. Should we call 911? I think we should call 911, just to be safe. How long has this been going on? Fuck. He’s really hot. Take off his pants. What’s his temp? 103? Okay, I think he’s coming back. Okay, he’s back. He’s crying. Where the hell are the paramedics?
Let me say right out of the gate that Nico’s is okay. He is sick but a-okay.
And of course Nico is totally over it, doesn’t even remember, but his mama? I’m still trying to stay in the moment over here. I worry that because Ben has epilepsy, Nico might have it too. I worry that there will be more of these, every time he has a fever. (I remember every single seizure Ben has ever had and they were all traumatizing) I worry that he might have to go on medication one day. I worry that he will start falling like Ben did. I worry that we’re in for another saga, one that, like in Ben’s case, has no pretty little bow to tie up. (Ben still has seizure activity when he is sick and no proper diagnosis. It turns out he was misdiagnosed last year)
I know that none of this worrying helps. Just let it be simple, right? Just stay in the moment, with what is. This is me giving myself a pep talk. This is me knowing that all I can do is be present and respond to what actually unfolds.
I have been reading a book by Nicole Krauss
I think that’s what we want to do as mothers, as parents. We want to hold our kids and somehow be like that shark– absorbing all of that electricity, all that’s too difficult to bear, neutralize it so that they don’t have to suffer. Most of the time I feel strong enough to do that. To hold all of it.
This is the journey of parenthood isn’t it? I can see you old-timers nodding your heads. You out there with the teenagers and college age kids. This is what it is to be a parent isn’t it? They get bigger and the problems change, but we are not that shark. We just do our best. Give me your words of wisdom people!
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My sweet girl,
Know that even if all the scenarios you outlined in your fourth paragraph come true, you will do exactly what you did with Ben. You will put one foot in front of the other. You will do what you can. You will hang on, moment by moment.
You won’t do it perfectly, although it will be a teeny weeny bit easier the second time around insofar as you will have an inkling of what’s coming and know exactly what you need to do to deal with it.
But whatever happens, you will do what you always do: be there, through the sweet and excruciating, with your heart wide open. You’ll stumble and you’ll clamber back up for air and you’ll keep on going.
And you will be OK.
You are seen and you are held, dear soul.
x
You my dear are a wonder to be hold. Out here, sharing your fears, heart ache, and soul whisperings for all us. I think there isn’t a reader or friend of yours in the whole world who doesn’t think that Nico and Ben have the best Mom (best, not perfect) on earth. Our thoughts are with you all. xxoo
Hugs and support to you. You will get through this.
Oh shit, well, you know and I know that everyone is going to get through this and be okay – they will. But still, you have to stumble over that field of broken glass over and over. I don’t know that these incidents get easier, but they do pass, they morph into something else and you forget about them. Zoe had febrile seizures as a baby – every time she had a temperature – always at night. And there we were each time running to her, holding her, me crying, Mark starting the shower so I could get in it with her to cool down. It was scary as shit EACH TIME! And then they stopped by the time she was about 2…and then she started with the NIGHT TERORS – which is a whole other rocky world, and then THAT passed and now you have to blow whistles to wake that teenager up for school in the morning she sleeps so deeply. It passes baby, it passes! LOVE to you and Ben and Nico and Matt!
I have tears in my eyes reading this. How frightening. I wsh I could offer some words of comfort. It is what being a parent is. But it is not all that being a parent is. It’s the 1% if you are lucky and all the happy silly stuff that happens most days is also what being a parent is too. You and your little family are in my heart.
My 15 year old doesn’t have seizures – but he did have both meningitis and kawasaki’s disease when he was a baby. That means that I’ve spent 15 years basically freaking out every time he gets sick. Now, when he goes down on the football field (and they ALL go down) – I hold my breath and try not to throw up – hoping beyond hope that it’s “just” run of the mill, that his heart didn’t stop (kawasaki’s can cause cardiac issues). Does it get easier? Nope. But you survive. And you’re right – you just do your best. (oh, and your 15 year old gets it, and doesn’t mind when you lunge at him for a hug at the end of the game.)
You’re already doing the hardest thing… you’re loving each other well. Might sound totally lame, but if you can keep doing that, loving your kids well, loving Matt well… you’ll be perfectly poised to handle whatever comes.
Oh, no. Poor you.
I have no words of wisdom, as I’m a newer parent than you.
But, I know that – no matter what the details – you and your family WILL get through this.
~Denise
Oh that sounds so scary Andrea. Hope he is feeling better soon, and that there are no more seizures in his future. Either way you are a strong mama.
I mean either way he has a strong mama who will guide him through
Oh shit. That just sucks. I have no words of wisdom but I do remember that great response to the exclamation “I can’t do this!” during birth — “You are doing it.” Well, you are already doing it. Moment by moment, barked order by barked order. You are strong and filled with love for these boys, and that is going to carry you through. Many warm thoughts to you guys.
Three seizures with Dottie, two with Nora Lea (so far) and a dad with epilepsy and you can bet your bippy this post resonated with my experience.
I’m giving you shark hugs so fierce, they neutralize the bad.
A zoom zip.
Seriously, let’s commiserate.
My oldest is headed in for a CT scan next week for other issues, and as I was driving home tonight I realized that while I am terrified, while I am heartsick, while I am trying to keep it all together, I am still living inside my greatest most wonderful dream. I am still in love with my life. It made me feel better.
One foot in front of the other, right? Keep walking. Keep walking as joyfully as you can.
Sending all of you my love.
My oldest had febrile seizures and I will never forget that heart in the throat, jelly for knees, punched in the stomach feeling each time she would cry out, always in the middle of the night, that characteristic cry that meant a seizure. She had 6 from 14 months to two years. She’s 24 now and my “baby” is nearly 20 but that feeling still hits me once and a while, when there’s a broken heart, a job rejection, or some other life disapointment. Hang in there, take care of those boys and take care of yourself.
Oh my goodness! Sending lots of brave and sturdy thoughts for you and your beloveds.
how scary for you all. I am hoping that it is just “regular” febrile seizures and not the same thing…and I hope that there is a diagnosis soon for Ben so you have a road map for what might be to come.
But it might not be, right? I’ve never had anyone be anything but terrified when they’ve seen me have a seizure (about 5-6 in my whole life), but the best thing you can do is love and try your hardest to make sure Nico and Ben both feel whole and not broken or less than. Its a feeling that is hard to shake, I’m still working on it! I hope that you can also give yourselves some love as well, you need it. Big love to you all
Andrea, you’re right — we aren’t that shark, and as parents sometimes we need that shark, because life is full of surprises.
Hang on — it gets better (and harder), easier (and more challenging) — just keep doing what you’re doing, loving your boys up everyday!
xo
Oh my!! Terror indeed. I am sorry you are going through this again. It has got to be awful to see your child go through this. I have epilepsy and I am so glad that I will never have to witness what I go through when I have a seizure. I can’t imagine what it’s like for the people who see it happen. It is a tough beast to learn to deal with. Finding medication that works, then suddenly after years of working it doesn’t do the job anymore, and moving on to trying a new medication. I wouldn’t wish any of it on my worst enemy.
Prayers for you.
Oh how scary. I don’t have children of my own but I am 6 years older than my brother and I remember growing up he had several seizures that were never fully explained and always came with a fever. It’s odd, and scary and insanity making that they cannot definte what caused them, but the good news is he grew up fine with no ill effects from it.
I don’t know Ben and Nico’s whole background on this but I hope as scary as it is that it turns out to not be too serious. Remember you are stronger than you can imagine.
Oh sweet Andrea. Wishing for the perfect words of comfort…tears are just streaming down my face with a heart full of love for you- brave and vulnerable and tender mama…Wishing you deep wells of peace and strength and floods of healing to your boys. xoxo, Lisa
Ugh. So sorry. How scary. I think as a parent you do absorb all the scariness for as long as you can, and then at a certain point you start handing your kids’ lives over to them and let them fly with the joy and the pain.
No words of wisdom here, just hugs and some positive energy being sent your way, for all of you.
so glad he’s ok – and bravo for being level headed (even if you might not have felt it at the time) about how to handle things.
i can understand your fears on a different level with my daughter’s food allergy. it’s terrifying having something this big out of your control.
it’s not IF she’ll have a reaction, it’s when. and you hope that those around her know what to do. my job is to make sure of that.
it’s always coming, you just have to be prepared to meet it head on. it’s just always going to come.
and the fears just multiply because you want them to be safe but then you think about junior high, or high school or their first kiss (what if he’s eaten nuts?) or going to college.
it never ends. and some nights it wakes you up. but some days you let it go into the universe to manage.
so i’m right there with you. sending energy your way, from a mama who knows. hugs and peace.
I wish I could help you or take some of the sucky stuff away for you. You are so obviously an amazing mama and you will find your way like all of us do as mamas and as people. You will. I remember my mother telling me once “Sometimes your best is shit. You still have to do your best.” I think as a mom I can honestly say that sometimes my best is shit or feels like it is or feels not good enough – whether it’s because I’m tired or lost or uncertain or scared – because I can’t protect my child all of the time and think I should be able to (he walked right in front of a car two days ago and I just want to wash that image out of my head & heart). But I keep showing up and doing the best I can each day, one moment at a time. It’s all you can do and it is enough, even if it doesn’t feel true sometimes. Blessings and blessings and lots and lots of love to you and yours. Jennifer
I hear how painful this is for you and Matt. It sounds terrifying. AND, you are a wonderful mother and he is a wonderful father. Together you are a solid team. The love you both have for your children will sustain you, will inform you, will help you when you look at each other and think “what the eff do we do!?” I know it’s scary, but together you will conquer.
I’m sorry to hear that. I hope it’s the first and last. It sounds like a lot to deal with, and having a lot sharpens the love sometimes, too, it seems. Or your awareness of it. I wish for you lots of calm moments, and shared love with your family.
Sending you and your family some love and healing right now. Sounds very very scary.
My daughter had seizures as a young child so I am familiar with the terror. Wishing you some peace and strength for your mama heart.
much love to you all!
PS
It
is
not
your
fault.
Don’t worry. I checked my crystal ball and everything’s going to be fine. Your boys are there, grown men, standing by their old mama, whom they love oh so much for having journeyed through so much together.
And also….
Goddammit, Universe. Give Andrea a f.king break. Go pick on some checked out, distracted parent who could actually benefit from this sort of message. You’re wasting it on Andrea…she doesn’t need it.
Oh, Andrea, how I wish that I could make you a card that said, PASS, and you could hold it up whenever you wanted to…
I am sending you all tons of love and strength.
Being in the moment is also freaking out … whatever it takes, for however long, there is really no wrong way.
I find myself worrying these days, over everything, and especially things that haven’t happened yet. Thos “what-ifs” are evil, and it’s making me crazy. My word for this year is “breathe” and with that, I keep on repeating to myself, “there is no point in worrying about what might happen – it hasn’t happened” over and over and over again.
You’re not alone.
You’re surrounded by people who have the answers you need, to keep you and your family healthy and well, physically, emotionally and spiritually – if you haven’t found them yet you will.
And in the meantime – lots of hugs.
Andrea… a coworker’s three children all went through frebrile seizures when they were young. It is indeed terrifying. But please know that most kids outgrow them.
http://www.nlm.nih.gov/medlineplus/ency/article/000980.htm
Stay strong my friend.
David
I’m so sorry to hear this Andrea. I don’t have kids so I can only imagine the mixture of overwhelming feelings that you and Matt must be experiencing, one wave after another after another. It sounds to me like you both dealt with the situation amazingly, both at the time and since then. Your boys are so full of positive, happy life which is a gift that you have given them – I think you guys are doing a fantastic job.
I once read that we are all doing the best we can with the tools we’ve got. I’ve taken this to mean that sometimes the tool we have is high precision and we are far better able to accomplish more with it, but sometimes all we might have at our disposal is a rusty spoon. I think it is how we learn to do great things with those rusty spoon days/times that say the most about us. I guess something to hold on to is that these times won’t last forever.
I’m guessing, with the amount of overwhelm, fear and love, this is a rusty spoon time, and I think you are doing a seriously good job with it.
My love and very best wishes for you all.
Dearest Andrea,
*Hugs*
I know that scary place because I have also witnessed my son having a seizure and it just makes you feel helpless. I read somewhere here in this thread something like ‘it is not your fault’… yes, you must try to remember that whenever you find yourself drifting to places of doubt and fear. I’m only saying this because I know I’ve had my share of guilt and blame because, wow, I was just beside my son, we were both sleeping and suddenly I felt the bed shaking and there it was – the whole nightmare of it all. I was alone and absolutely clueless of this seizure thing and why and how. It was unbelievably scary and to top it all off I had the most unpleasant thoughts: How long was it going on? Why did I miss it? I should have been awake. I’m horrible. Will he have another one? Will I miss it? I should be a better mom. Blah blah blah. No good. All fearful thoughts.
It’s tough but I know you are full of love and wisdom. This will pass. Take it one breath at a time. And remember you are Love. So try to always come from that place of Love. Whatever happens. And also remember you are LOVED. 🙂
Warm smiles and healing hugs to the family.?
p.s.
thank you for sharing
*Warm smiles and healing hugs to the family *heart* (that question mark was supposed to be a heart)
{{{{{{{Andrea}}}}}}}}} hugs to you and your entire family. My friend’s son went through febrile seizures as a young boy – also when he had fevers – he’s fine now. And is a healthy growing, fantastic 13 year old.
It’s okay to feel frightened, to worry for our babes – when my father was alive – if I didn’t call him on Sunday afternoon (our weekly phone call) he worried and thought something was wrong. He was 95 and I was 45. So you see parents forever worry about their children the worry is intertwined with our great love for them – it’s that elastic bungee cord of love that so connects us to our children forever.
You are strong. You have a huge glowing heart filled with such joy and great love. For all. You are a wonderful mom. You and your husband did a great job in the moment you were in.
When my daughter was ill (for the third time) with pneumonia I was terrified – again. But this time – I changed my feelings and thoughts – I kept visualizing her body glowing with strength (a superhero kind of strength)- I kept saying to her that she is so strong – that her body is healing fast. It worked. She quickly became well (the other times the healing time was slower) and in 4 years since she’s not had any other bouts of pneumonia.
Love and hugs to you – all of you…xoxo
Oh Andrea, I’m so sorry to hear about Nico. There aren’t any words to make things better but know there are many, many people sending you lots of positive thoughts and energy. Keep strong!
My 6 year old was born in the car and I thought I was going to loose him. For years, still sometimes now, I obsess about him running infront of cars or falling or…
My body seems to be like that shark sometimes, I can feel his pain when he is hurt.
The lesson for me, holy shit am I capable of love. Yes, of fear too, but of so much love.I remember when my daughter had colic for about 6 months, she would cry to the point of me weeping. My mother would come over and just hold her and walk with her, all the time she was screaming. I watched her and thought, how can she do that?
You know what, put a baby in my arms now, crying or not, I could walk and sing, walk and sing. That is what time has given me.
Love to you mama! You are doing so beautifully!
Andrea,
I’m so sorry that you have to go through this. How terrifying. . .
The image of the shark is so poignant to me. My son has night terrors and each night I pray that he won’t have another and each time he does I pray that I could take all that fear from him. But I can’t, we can’t, we can only love them and know that none of this is wasted, that it is all leading us to something better.
Much love and peace to you!
Oh my goodness, those scary parenting moments that usually happen with no warning…and they continue to happen…and then there are grandchildren…all part of the love. You are an amazing mom, doing a wonderful job. Hang in there. Hugs and blessings to your beautiful family. xo
I am so so sorry! You will make it through this since you are SUCH an amazingly strong person. And Nico will be fine. Look how great Ben is. Sending you much love!!!
Beautiful analogy…so true and so false. We want to be the shark and in some ways we are; we buffer a lot of pain; but we are not the shark; we can’t be and we shouldn’t be. We are better than the shark because we guide our children through the darkness, the fear, the pain, we don’t hide them from it. We model for them the calm in midst of the panic and that is both reassuring and educational.
What your feeling doesn’t go away, no matter how old they get, but eventually you see all they’ve learned and you learn to trust in all you’ve taught them.
Good luck and hope Nico is feeling better soon.
i took a deep breath for you after reading your post. there are so many aspects of mothering that one cannot prepare for, plan for, or dream about. and grappling with the “how to” in the moment can incite pure hardcore, fear. i get it. they are our greatest teachers, these little ones, with their very precious lessons. sending you strength and friendship, andrea. xx
Dear Andrea,
i am so sorry to hear about that. My brother has epilepsy too, he had a big seizure in my car years ago. I know your fears and i had those feelings too.
I wish you all the best for Nico and the family. 🙂
oh, so sorry that you all have been going through more tough and scary stuff.
i have no answers, no words of wisdom, as i am not a parent and no one in my family has had anything like seizures. but we have/had other sh*t to deal with, so i pray for my family. and i will pray for you and your family, too.
take good care of yourself, too, okay?
kathy
As the mother of 2 college girls, I can honestly say there is always something to worry/fret/angst/you name it when you raise kids. This is the journey, every one is different and yet we as parents all share the same collective trauma when our kids aren’t ok. They seem to get over it but we don’t. Hang in there….it’s a long ride.
Christine
Oh man, I freak out at a nose bleed. I can not even imagine. My heart goes out to you. As someone who has had childhood seizures and who now as vasovagal syncope (no more seizures). The best thing to know is what the trigger is. Looking for that really helps. Seeing it happen has got to be awful but knowing it’s coming and preparing can help.
Big hugs Mama
Andrea I held my breathe as I read this. I wish I had the perfect words to comfort you. Instead I will tell you my story. I am an old-timer as you put it mother of three ages 14,17,20. My oldest was born with a serious heart condition. When I first heard the news I was devastated I sobbed in the doctors office like a baby. I held Olivia in my arms and started making little promises, I will be strong for you, I will take care of you, I will always love you, I will never let you down, I will always be your Mama. Like winning the lottery for eighteen years Olivia thrived she had her cardiac appointments regulary took a few meds and lived a perfectly normal life. I learned to put her illness on a shelf and life was good. And then the shelf came crashing down. Two weeks before Olivia left for her freshman year of college the doctor told us her condition was progressing and she would need an aortic valve repair or transplant in the next year or two. I was once again crushed but I knew I had to be strong for my girl I couldn’t let her down. It took every ounce of strength and faith I had to send her to school all the way to Washington DC from our house in Boston.She had worked so hard in high school and had been accepted into a very challenging program, I could’t stand the thought of this dream being taken away from her. With her doctors approval we monitored things every four months she would fly in for appointments (thank God for jetblue $75 flights) and all went well she had an awesome freshman year. Sophmore year she flew home for Christmas break and had a ten hour open heart surgery at Childrens Hospital. It was a great success and we came home nine days later on Dec 23rd and had the most beautiful Christmas of our lives. It was sweet and simple we were all together and I was in heaven. I wish I could say it ends there but she will have more surgerys and there will be challenges ahead. But I will tell you Olivia is the hardest working kid I know in all aspects of her life she lives large. Idol time does not exist she is on a mission. She is currently in Barcelona a junior in college studying architecture and living out her dreams. There are times that I hold my breathe and rock back and forth in prayer but I am strong because I have to be I am the Mama.
parenting is scary. i can’t offer you any words that you don’t already have. one foot in front of the other.
Andrea. Everyone is holding you here. I read all of the comments and the outpouring of love and support is tangible.
I’m not an old timer in the mom department. I’m still getting over that my son has a scar between his eyebrows from a fall at Hebrew school last week and every time I think about it I want to cry from the stress and sadness.
I got an e-mail from the Hebrew School and they want to meet with us on Sunday to go over ways to make the school safe for Max because he does things differently than the other kids.
The beginning of a LONG journey of advocating for my son and creating environments that support who he is and what he needs. It breaks my heart that I have to do this.
I want to hide in the fetal position – I feel un-equipt for this job of mama. like – totally not able to deal.
Yet – luckily – just like you – there are mom’s who have gone before me – and can hold my hand as I walk through terrifying waters. Thank God for that.
anyhow – I’m here for you always. And I know you are there for all of us! We just all do our best and none of us knows about tomorrow – we all can just do our best to be right here and be present as much as we can.
Love to you and your family.
xo
*c
Healing, warm prayers and thoughts going out to you and your family tonight…
Sometimes advice and suggestions and war stories aren’t as necessary or as helpful as knowing that you and Matt and your beautiful boys are being held in love and prayer by those who love you. I hope you know that you are being loved and prayed for and thought of both near and far.
I pray that you will have all the strength, courage, clarity, and all the tears that you will need to traverse this journey. Let me revise that – I pray that you will recognize that you already have all the strength, courage, clarity, support, and tears that you need to traverse this parenting, marriage, and life journey. Because you already have everything you need. Every single thing, my sweet friend.
Peace be with you.
you are a brave, strong woman. when something bad happens or someone is sad, my two year old daughter always says..”the sun will come up tomorrow”.
Oh no! This gives me heart palpitations just reading it… I can’t imagine the emotional roller coaster you must feel. I give you my virtual shoulder, my friend, to let it all out. Sending you so much love and light. xo
Definitely nothing like it. Nothing like that bright moment when you think, this is it, I am going to watch my child die and there is nothing I can do.
Two of my three had epilepsy. My first baby developed it at 9 months. My second, at 4 years, and hers was life threatening. Now I look at my 5 year old third child and think, please, please let this one through. When will she be safe? When can I stop waiting?
The waiting is the worst.
I think sweet Nico Boon has the best word of wisdom right on his adorable, chubby belly. Courage. “Courage is looking fear right in the eye and saying “Get the hell out of my way, I’ve got things to do”
You’ve got this, Mama. courage.
Oh Andrea, this just made my head spin. I’m so sorry that you’re going through this but so glad that Nico and Ben have such an amazing mamma to take care of them. My heart goes out to you…
Love and strength to you and your little sweethearts.
What an amazing community of commenters you have here. I am so uplifted by all the common pain and messages of strength shared here. I hope you were, too. And I hope you know what that says about you and what you are able to bring into your life. Misery loves company, but courage and perseverance does, too.
sending you a hug, love, strength, courarge, fear-less-ness.
you are an angel on earth & wonderful mom.
I will be keeping all four of you in postive thoughts.
my son just had his second febrile seizure today, and while it wasn’t nearly as frightening as the first (see: thought he was choking, giving him the Heimlich, freaking out when he stopped breathing and turned pale, dialing 911, turning pale myself and thinking I’ve just watched my son die before my eyes… until he started breathing and crying) it was still jarring and so very scary. This time, I held him through the seizure, rocking him, calming him, taking off his clothes to get the temperature down and didn’t freak out, just rocked him and cried a little once it had passed. I wonder if he felt it, if he was aware and remembers it. It seems like he would… I hope he doesn’t.
oh wow. I can’t even imagine. But I feel for you.
Oh Sweet Andrea, how brave you are. As a mum of a little one and another one on the way I can understand completely what you’re going through.
I don’t have words of wisdom, and anyway I think you are doing wonderfully. I just want to remind you to be easy on yourself, sometimes it’s impossible not to worry and I guess we should allow ourselves a space to do so in order to move on and act.
I wish nothing but the best for your boys and for your family and hoping they both get better.
Much love
Hey there this is kind of of off topic but I was wondering if blogs use WYSIWYG editors or if you have to manually code with HTML. I’m starting a blog soon but have no coding knowledge so I wanted to get advice from someone with experience. Any help would be enormously appreciated!