I had these as a teenager, Megan (between the ages of 15 and 18) and had no clue at the time what they were. Told no-one, except my boyfriend, who was the only one who actually noticed them. (I think people thought I was staring into space.) I didn’t tell my parents, as I was worried I was going mad. (There were hallucinations while I was ‘absent’, which I struggled to remember once the episode passed.) It resolved after a couple of years with no intervention.
As an adult, I read a description of absence seizures and it all fell into place. I do hope in your daughter’s case it is something that resolves on its own, as it was for me.
I went through my whole childhood being yelled at by parents, teachers, coaches, etc. For my ”constant” daydreaming. Like I had some choice in the matter. People still To this day crock their head and say “WTF is an Absent Seizure?” Again, like I’m making it up to get pity. I gave up on getting any real help. Now my physicians feel that I’ve lived with it this long (I’m 51) then what harm is it going to do? More to the point, I think the medical world has gotten top least off prescribing the meds that actually help patients the most… being that they are on the narcotics tier system and every doctor is afraid of losing their license as opposed to providing better care.
Hang in there, Megan. It’s a hard road, often life long. But you need to be your daughter’s advocate, and her teacher about her condition. I know you can do it. Plus - take care of you! Vent, cry, throw old plates at a broken down brick wall to ease out some of that tension we all let build up inside.
Many hugs and lots of positive energy coming your way. Give your daughter a big hug, too.
Oh Meg of the North, sending you a massive hug!! 💝 Thank you for sharing, and for your support. I’m SO sorry people didn’t advocate for you. 😭 I am definitely doing all my research and advocating for my baby girl. And I will give her a big hug, too. ❤️❤️❤️
In all my years teaching, it was the single moms that were the best parents to work with. The strength. The resilience. The advocacy. The depth of connection with their kids. There's something very special about single moms. (and something very special in a very different way about single dads).
One thing I can see in you and in many single moms I know is that not having a partner is actually an asset. You don't have to make two heads agree on something huge. Did you know that the divorce rate of parents with kids with special needs or medical conditions is astronomically higher than the already over 50% divorce rate average?
I bow to you Megan. Your daughter is growing up to be a badass woman with strength, confidence, resilience, and a balanced level of shame because of you.
Oh Teri Leigh… your words are so soothing to my soul. Thank you so very much. 🥹🙏💛
And, that’s so interesting about the divorce rates and families with special needs or medical needs. It’s very hard making these big choices alone, but it would be worse if I had a partner who had a completely different idea on what the best medical treatment was then I did. Good lord the stress that would cause would be horrrrrrrrible. 😳 So, thank you for that perspective reminder. 💛
As a parent with a child who had scary unknown health issues (still has them, no longer so scary as much as a fact of life), my heart goes out. Our situation was never so potentially dangerous, but at first we didn’t know that, and I think we have at least a sense of it. And by yourself!
Thank you, and the same back. Without writing a wall of text, I’ll just say his condition is understood and under control and all our fears are in the past tense. I absolutely wish you and yours the same.
This past May when I was in the hospital recovering from colon surgery, it dawned on my partner and I that my 22 yo son might always be living with us. He has most of his life lived with me. He had a serious relationship for a few years and it ended very badly. She did very mean things to my son that I wasn't aware of but we could see he was different. My son is autistic. I thought I had protected and raised him well enough he'd be fine without his mother in his daily life. I was very wrong. He needs our advice with many simple things for most people. Somehow I thought he'd had overcome this horrible disease we've had to endure since he was 18 months and nonverbal. I thought he'd had gone to all of the best schools and he had the best teachers he was raised to be capable. I was wrong. My social worker at my hospital stay explained to me that my son might always live with us. Until she had said those words they never made any sense to me. He's so smart. He can do anything. But he's different and that's a hard struggle to overcome. But it is a struggle, it's the life we were given. Now, I try differently with my son. I try not to argue with him or push him into things. I treat him as if he was a baby bird. Mine to love and give nutrients to so he will continue to love and grow. My heart is here for you as are my listening ears and my reading eyes. Thank you for pouring your heart out here.
Thank you so much for being here, and for your support. 💝 And thank you for sharing a little bit of your journey, too. Goodness, it can be so so so tough being a parent and watching your child struggle. You are a wonderful mom. 💛💛💛
Hi Megan. Unusual for me to write to a complete stranger, but there it is, after reading this. To echo other comments here, wish there was something I could do to help you deal with your situation. You have to be strong for your daughter. And I'm sure that every single one of us who have read your post today, would do anything within their power to help you and to help your daughter. If I were in the room with you, I'd want to put my arms around you and give you the biggest hug you've ever had. By way of telling you there's nothing I can do, except that. ❤️❤️❤️
dearest dearest Megan, we are all here with you. I don't know how to be helpful but here I am for you, for whatever you can think could be helpful for you. As a father of a son with a very rare neurologic illness I think I have a hint about what you may be feeling and experiencing. Sending you tons and tons and tons of support and love and hugs.
💛 Thank you so very much for the support!! 🙏 And oh my goodness… yes, I am certain you know the feels of your child facing something like this. 🥺 Sending your family love and support, too. 🙏
I’m a registered nurse and halfway through this article, I KNEW what was happening. I’ve never seen one in my career, but I have heard of them. I can only imagine what you are going through. And I’m so so sorry. I have a grandson that was born with an extra Y chromosome. It’s so rare around here that it’s been tough to find someone that at least a little of what’s going on with him. He can have intense anger. He’s 10 years old and he can’t focus in school. He has to have school at his babysitters on a laptop. I empathize with you fully and it looks like you have many supporters here. If you ever need to talk, I’m here and I’m on Instagram, too. Anytime. Sending lots of love, hugs, and prayers to you and Amelia. Hang in there. 🙏🤗❤️
💝💝💝 Thank you so much for being here, and for seeing me! Means so much. 🥹 And oh my goodness, my heart goes out to you and your grandson and family. That sounds incredibly challenging and lonely and all of the things. Sending you a big hug!!! 💛
i've felt connected to you a long time before knowing all of this.
isn't it weird?
i'm a single single single mom of a child with a rare condition (the most known synthom is autism, but not the only one). and the risk of seizures are with us all the time.
Here for you, Megan. Being a mother is like that Winnie the Pooh quote…. Wearing your heart outside your chest… and letting it get trampled over and over. Sending strength 🤍🫂
And… I could see her having seizures. On the laptop. In real time. I’ll never forget that holy fucking shit moment as I watched the laptop screen.
Oh Megan. My friend. I am SO sorry you've had to go through this walk. Seeing your baby have seizures when they have no outward signs is like a massive gut punch.
That moment. Those feelings. I know those waves and what it does and doesn't look like on a screen and my fucking heart hopes to the whole fucking you never experience the seizures I did with Lily.
Also, you were NOT a bad mom for waiting. I talk extensively about seizure meds in the book as that was my world. For reference lily was 13lbs and took 8ml of regular strength phenobarbital, ALONG with Keppra and Klonopin 😭
Ohhhh the feels… thank you for seeing me, friend. 😭❤️🩹 In Amelia’s case I could see her having her outward absense seizure symptoms, but to see her brainwaves on the laptop in real time and to know there was no other explanation then seizure is just… awful. And I know you know that only too well. 😭
Goodness… your 13lb baby on that many meds?!… I can only imagine being in your shoes. 🥺😭
In Part 2 I’m going to dive into the treatment part of everything more. Gulp.
Well that puts things into perspective….damn lady.
I am sending good thoughts, good vibes and prayers your way.
With enough positive stuff coming to you, you can make the most heavy trial into a tryumph.
I do believe that.
And as the loving mom that you are you see your precious girl as the gift that she is. The miracle she is. And the outstanding , strong, wonderful mom that you are.
Wow. What a story! It would make great fiction, a Hollywood story! Call Hallmark! But it’s NOT fiction, is it? It’s as real as it could possibly get.
You are an AMAZING Mom, Megan. NOTHING is more important to you than Amelia. You would KILL for her. You would DIE for her. YOU saw this condition in her. YOU were the Mama Bear protecting her cub. YOU did your research - and didn’t just rely on Dr. Google like so many. YOU refused to take prisoners. YOU handled it the best you could.
It’s probably a good thing she wasn’t home when you got the results. It’s never good for a kid to see their parent - in your case, her ONLY parent - completely lose her shit. So I’d count that as a blessing because it allowed you to at least get YOUR shit together a little before hitting her with the news and having HER lose it.
Virtual hugs and a soft shoulder here. You’re incredibly brave in sharing this. But I’m not surprised you did. “Shame sandwich”, indeed. You’re tough as a $5 steak, and not one bit afraid to show it. Of course, now comes the newest answer to the old joke “How do you keep an idiot in suspense?” Answer: “Come back next week for Part 2!” To quote the movie, “You’re KILLING me, Smalls!”
I had these as a teenager, Megan (between the ages of 15 and 18) and had no clue at the time what they were. Told no-one, except my boyfriend, who was the only one who actually noticed them. (I think people thought I was staring into space.) I didn’t tell my parents, as I was worried I was going mad. (There were hallucinations while I was ‘absent’, which I struggled to remember once the episode passed.) It resolved after a couple of years with no intervention.
As an adult, I read a description of absence seizures and it all fell into place. I do hope in your daughter’s case it is something that resolves on its own, as it was for me.
💛 Goodness, I can only imagine how scary that must have felt to wonder what was going on. Awful!!! Soooo thankful they went away. 💝💝💝
Amelia 🤍🤍🤍
Thank you for creating access and awareness around Absent Seizures so that those of us on the sidelines can be better support to you both.
You. Are. The. Best. Mom. For. Your. Girl. BEST. There is no one better.
You are a brilliant being.
We are here to hold you Mama.
🫂 🫂 🫂
Miss K. 🥹 You ALWAYS know what to say. Always. 😭 Thank you so very much for your warmth and your encouragement. It truly means so very much. 🙏💛🙏💛🙏
I went through my whole childhood being yelled at by parents, teachers, coaches, etc. For my ”constant” daydreaming. Like I had some choice in the matter. People still To this day crock their head and say “WTF is an Absent Seizure?” Again, like I’m making it up to get pity. I gave up on getting any real help. Now my physicians feel that I’ve lived with it this long (I’m 51) then what harm is it going to do? More to the point, I think the medical world has gotten top least off prescribing the meds that actually help patients the most… being that they are on the narcotics tier system and every doctor is afraid of losing their license as opposed to providing better care.
Hang in there, Megan. It’s a hard road, often life long. But you need to be your daughter’s advocate, and her teacher about her condition. I know you can do it. Plus - take care of you! Vent, cry, throw old plates at a broken down brick wall to ease out some of that tension we all let build up inside.
Many hugs and lots of positive energy coming your way. Give your daughter a big hug, too.
Oh Meg of the North, sending you a massive hug!! 💝 Thank you for sharing, and for your support. I’m SO sorry people didn’t advocate for you. 😭 I am definitely doing all my research and advocating for my baby girl. And I will give her a big hug, too. ❤️❤️❤️
In all my years teaching, it was the single moms that were the best parents to work with. The strength. The resilience. The advocacy. The depth of connection with their kids. There's something very special about single moms. (and something very special in a very different way about single dads).
One thing I can see in you and in many single moms I know is that not having a partner is actually an asset. You don't have to make two heads agree on something huge. Did you know that the divorce rate of parents with kids with special needs or medical conditions is astronomically higher than the already over 50% divorce rate average?
I bow to you Megan. Your daughter is growing up to be a badass woman with strength, confidence, resilience, and a balanced level of shame because of you.
Oh Teri Leigh… your words are so soothing to my soul. Thank you so very much. 🥹🙏💛
And, that’s so interesting about the divorce rates and families with special needs or medical needs. It’s very hard making these big choices alone, but it would be worse if I had a partner who had a completely different idea on what the best medical treatment was then I did. Good lord the stress that would cause would be horrrrrrrrible. 😳 So, thank you for that perspective reminder. 💛
you are right where you are supposed to be as mama to your daughter.
Sending you and Amelia the hugest hug & keeping you both in my thoughts. 💛
Thank you so much, Asia!! Hugs received!!! 🥹🙏
As a parent with a child who had scary unknown health issues (still has them, no longer so scary as much as a fact of life), my heart goes out. Our situation was never so potentially dangerous, but at first we didn’t know that, and I think we have at least a sense of it. And by yourself!
💛 Sam, hugs to your family!!! It’s so so scary when your child has serious unknown health problems. 💔 Thinking of you all. 🙏
Thank you, and the same back. Without writing a wall of text, I’ll just say his condition is understood and under control and all our fears are in the past tense. I absolutely wish you and yours the same.
💛 Sooooo glad to hear that!!! Happy chills for you. I pray for the same! 💝
This past May when I was in the hospital recovering from colon surgery, it dawned on my partner and I that my 22 yo son might always be living with us. He has most of his life lived with me. He had a serious relationship for a few years and it ended very badly. She did very mean things to my son that I wasn't aware of but we could see he was different. My son is autistic. I thought I had protected and raised him well enough he'd be fine without his mother in his daily life. I was very wrong. He needs our advice with many simple things for most people. Somehow I thought he'd had overcome this horrible disease we've had to endure since he was 18 months and nonverbal. I thought he'd had gone to all of the best schools and he had the best teachers he was raised to be capable. I was wrong. My social worker at my hospital stay explained to me that my son might always live with us. Until she had said those words they never made any sense to me. He's so smart. He can do anything. But he's different and that's a hard struggle to overcome. But it is a struggle, it's the life we were given. Now, I try differently with my son. I try not to argue with him or push him into things. I treat him as if he was a baby bird. Mine to love and give nutrients to so he will continue to love and grow. My heart is here for you as are my listening ears and my reading eyes. Thank you for pouring your heart out here.
Much love Jenn
Thank you so much for being here, and for your support. 💝 And thank you for sharing a little bit of your journey, too. Goodness, it can be so so so tough being a parent and watching your child struggle. You are a wonderful mom. 💛💛💛
Hi Megan. Unusual for me to write to a complete stranger, but there it is, after reading this. To echo other comments here, wish there was something I could do to help you deal with your situation. You have to be strong for your daughter. And I'm sure that every single one of us who have read your post today, would do anything within their power to help you and to help your daughter. If I were in the room with you, I'd want to put my arms around you and give you the biggest hug you've ever had. By way of telling you there's nothing I can do, except that. ❤️❤️❤️
🥹 Charles, this was so touching, thank you so very much for taking the time to share this. I feel the support and it means a lot! 💛🙏
dearest dearest Megan, we are all here with you. I don't know how to be helpful but here I am for you, for whatever you can think could be helpful for you. As a father of a son with a very rare neurologic illness I think I have a hint about what you may be feeling and experiencing. Sending you tons and tons and tons of support and love and hugs.
💛 Thank you so very much for the support!! 🙏 And oh my goodness… yes, I am certain you know the feels of your child facing something like this. 🥺 Sending your family love and support, too. 🙏
Thank you for sharing this. You can't feel it but I'm hugging you 💝
🥹 Thank you so much for this! I feel your hug!!! 💝
Damn Megan... I don't even know what else to write, except I wish you and your daughter didn't have to deal with this... Thinking of you both lovely.
Thank you so much, your care means so very much!! 🥹🙏
I’m a registered nurse and halfway through this article, I KNEW what was happening. I’ve never seen one in my career, but I have heard of them. I can only imagine what you are going through. And I’m so so sorry. I have a grandson that was born with an extra Y chromosome. It’s so rare around here that it’s been tough to find someone that at least a little of what’s going on with him. He can have intense anger. He’s 10 years old and he can’t focus in school. He has to have school at his babysitters on a laptop. I empathize with you fully and it looks like you have many supporters here. If you ever need to talk, I’m here and I’m on Instagram, too. Anytime. Sending lots of love, hugs, and prayers to you and Amelia. Hang in there. 🙏🤗❤️
💝💝💝 Thank you so much for being here, and for seeing me! Means so much. 🥹 And oh my goodness, my heart goes out to you and your grandson and family. That sounds incredibly challenging and lonely and all of the things. Sending you a big hug!!! 💛
i've felt connected to you a long time before knowing all of this.
isn't it weird?
i'm a single single single mom of a child with a rare condition (the most known synthom is autism, but not the only one). and the risk of seizures are with us all the time.
all my love to you both.
from Brazil!
Oh Aline, chills. I see you, and am sending you sooooo much love and strength. 🥹❤️🩹🙏💕 You are such a strong human!!!
Here for you, Megan. Being a mother is like that Winnie the Pooh quote…. Wearing your heart outside your chest… and letting it get trampled over and over. Sending strength 🤍🫂
Thank you for this!! 🥹🙏 That is sooo accurate. ❤️🩹 💝
And… I could see her having seizures. On the laptop. In real time. I’ll never forget that holy fucking shit moment as I watched the laptop screen.
Oh Megan. My friend. I am SO sorry you've had to go through this walk. Seeing your baby have seizures when they have no outward signs is like a massive gut punch.
That moment. Those feelings. I know those waves and what it does and doesn't look like on a screen and my fucking heart hopes to the whole fucking you never experience the seizures I did with Lily.
Also, you were NOT a bad mom for waiting. I talk extensively about seizure meds in the book as that was my world. For reference lily was 13lbs and took 8ml of regular strength phenobarbital, ALONG with Keppra and Klonopin 😭
Ohhhh the feels… thank you for seeing me, friend. 😭❤️🩹 In Amelia’s case I could see her having her outward absense seizure symptoms, but to see her brainwaves on the laptop in real time and to know there was no other explanation then seizure is just… awful. And I know you know that only too well. 😭
Goodness… your 13lb baby on that many meds?!… I can only imagine being in your shoes. 🥺😭
In Part 2 I’m going to dive into the treatment part of everything more. Gulp.
Sending you so much while you work through writing all of that!!!
Thank you!! 🥹
Well that puts things into perspective….damn lady.
I am sending good thoughts, good vibes and prayers your way.
With enough positive stuff coming to you, you can make the most heavy trial into a tryumph.
I do believe that.
And as the loving mom that you are you see your precious girl as the gift that she is. The miracle she is. And the outstanding , strong, wonderful mom that you are.
Your words give me chills, Di! 🥹💝 Thank you so, so much. We WILL turn trials into triumphs!!! 🙏💛💛💛
I see it, and feel the emotions you so eloquently wrote of.
Brilliant descriptions.
Made it so real and understandable…for example my wife who has 2masters and PhD in public health said, “Wow that was well written!”
Ahhh, thank you for sharing this!!! So very happy/proud of that feedback. 🥹🥰
Wow. What a story! It would make great fiction, a Hollywood story! Call Hallmark! But it’s NOT fiction, is it? It’s as real as it could possibly get.
You are an AMAZING Mom, Megan. NOTHING is more important to you than Amelia. You would KILL for her. You would DIE for her. YOU saw this condition in her. YOU were the Mama Bear protecting her cub. YOU did your research - and didn’t just rely on Dr. Google like so many. YOU refused to take prisoners. YOU handled it the best you could.
It’s probably a good thing she wasn’t home when you got the results. It’s never good for a kid to see their parent - in your case, her ONLY parent - completely lose her shit. So I’d count that as a blessing because it allowed you to at least get YOUR shit together a little before hitting her with the news and having HER lose it.
Virtual hugs and a soft shoulder here. You’re incredibly brave in sharing this. But I’m not surprised you did. “Shame sandwich”, indeed. You’re tough as a $5 steak, and not one bit afraid to show it. Of course, now comes the newest answer to the old joke “How do you keep an idiot in suspense?” Answer: “Come back next week for Part 2!” To quote the movie, “You’re KILLING me, Smalls!”
🥹 Damn, thank you so much for all of this!!! I AM doing all of this, and your words don’t let me forget it. 💛🙏
And yes, hehe I’m glad you’ll be sticking around for Part 2! 😁🙏