Rest in Peace Pakde...

 So this is your last lesson for me.

To remind me that time passes by so quickly for everybody.

Not to say "I'll say hi tomorrow." or "Oh whatever!"

To take actions and not just to remember.

A dream might be just a dream.

Or a reminder that time isn't something you can redeem.

You "came" twice and now all I have are tears and regrets.

Your sincere self, nobody forgets.

Thank you for everything and rest in peace, Papade...

For you, only the best place awaits, In shāʾ Allāh...

Love,

Bubu and Kukka

IN MEMORIAM

M.S LUKMAN HAKIM BIN BAKRI

1955-2023

Doc. Rocksy Menjelaskan:

July means it's time for another session with my lovely Neurologist. Days before the appointment, I made sure I wrote everything I wanted to say, things to ask and videos I had to show her. Note to self: Don't make any appointments on Monday! The hospital was packed like crazy!!! It looked more like a concert rather than a hospital! And I'm talking about the 5th floor only (Neurology and stuff)! Lucky me I found a comfy chair to sit on and I was able to...observe what was going on in front of me while waiting for my turn to see The Rocksy 🤟🏼 

There's this 1 family: 2 elderly, a couple with 2 small children and 3 bigger ones, all girls. I assume the patient was actually the grandma (?) and the rest was just being...there for her? The girls were running around in the waiting room, being loud and all. Until the smallest one was shoved by the bigger one. The little girl fell on the floor and bumped her head on the leg of an iron chair. The bump was pretty loud which means she bumped her head quite bad. I was reading and shocked by the loud sound 😅 I was like "Astaghfirullah!" and instinctively stood up to hold the little girl. Luckily her mom was close by. It took the little girl about 5 seconds to realize the pain and then she went "WAAAAAAAAAAA!!!! 😭" Her mom immediately hugged her while the rest of the family also tried to comfort her. Leaving the one who shoved her alone on the side. The big girl didn't show any remorse. She looked kinda pissed 😆 Minutes later she frowned, cried loud and hit her mom repeatedly. Feeling guilty? Or scared? Now... While SHE was crying, the one who bumped her head already STOPPED crying and running around happily with the others. Oh god the drama 😂 It was really difficult for me not to laugh. The mom saw it and smiled at me. Good luck mam 😄

Now back to me, the patient. Like always, the second I stepped into her room, my doc smiled widely and "Ibuuuu gimana kabarnya nih?" 😊 And theeeen she saw my left hand, the one I landed on when I had a major seizure:

"Jangan-jangan retak lho! Ngga dironsen waktu itu? ... Ini daerah favorit nih! Sepertiga dari distal, radius ini, gampang banget retak. Jatuh numpu gini, retak. ... Ngga dibawa ronsen, dibiarin aja, pake itu aja? ... Boleh saya lihat bukunya? ... Hmmm... Udah hampir 3 bulan, bu... Yang betul-betul kejangnya 4?! Ada videonya ya... Hmmm... Oooh renovasi rumah? Tapi enak dong sebetulnya ada proyek! ... Coba bikin kolam renang 😄 ... Kerjanya nyontek-nyontek! Oh Pinterest ya! Oke deh! 😄 ... Nih ada prestasi nih!! Ciyeee! Ditulis! 😄 Skrip film! Meskipun subjek cerita melenceng... Terus nulis kumpulan cerita pendek! Piano juga selesai! EH KEREN LHO! ... MANTAP INI! ... 

Dapet dari mana 😄 ... Sekarang yang udah disahkan di Aussie buat jadi medicine. ... Jadi kalau secara kedokteran canabinoids ini satu membantu untuk spastik, spastis itu kaku. Ibu kan ngga ada jadi ngga berguna. Yang kedua membantu pain, nyeri. Di ibu juga ngga ada. Jadi ngga berguna. Untuk pain dimana-mana. Jadi dia relieve dari pain, dari yang tadinya nyeri banget kalo pake ini nyerinya jadi berkurang. Nah yang ketiga memang untuk stress. Mungkin kita pake ini untuk yang ketiga. Tapi ati-ati lho! Ini interaksi sama obat-obat kita! ... 😆😆😆 Kita baca dulu ya bu! Kalo di Australi ... Mereka yang bentuk oilnya, dioles. Tapi ada juga sih yang bisa diminum. ... Kita mau masukin untuk pasien MS. Ngga lulus badan POM. Begitu dibilang isinya canabis langsung ngga boleh. ... Kalau mau dikasih jarak sama obat ibu. Dan ngga boleh lebih dari 2 lho sehari! ... Using canabis together with Keppra might increase side effects such as... ... Karena ibu kan pain ngga, spastik nggak. Lebih karena stressnya aja. Jadi kalo saya sih boleh rekomendasi kalo ibu lagi ngerasa ngga enak... Jika dibutuhkan aja dan kasih jarak ya bu! Minimal 2 jam. Dari Keppra-nya. ... Tegretol-nya... Kalo sama Tegretol ngga terlalu banyak cuma efek obatnya berkurang. Kalah sama canabinoid-nya. ... Yuk kita periksa bu! ... 

120/80 ... Mata aman, ngga ada gangguan. Pendengaran. Keseimbangan? ... Yuk kita tes ya! ... Oooh oke! ... Itu tidur malem? Obatnya kita atur ya! ... Kita coba mundurin ya... Keppra 7 pagi, 7 malem ya! Tegretrol 7 pagi, 1 siang, 7 malem. Mudah-mudahan bertahan sampai paginya ngga kejang ya... Kita ketemu lagi bulan 10... ... Saya agak sedikit kleyengan nih... 5 menit, 10 menit. Saya minum Brainact kepala langsung berat. ... Agak dizzy aja rasanya. Kurang balance. Bentar lagi dapet efek relaxnya nih... Udah berapa butir Ibu minum nih? ... Kita hanya konsumsi kalau Ibu lagi mumet banget ya! ... Kafein itu kan stimulan bu... Prinsipnya obat-obat ibu kan memang mempengaruhi zat di otak. Jadi kopi, kafein itu mengaktifkan. Takutnya sama Si Keppra bikin turun jadi...kacau. 

Oh gimana soal tangan ya! .... Ini sakit? ... Sakit? ... Coba grab tangan saya sekuat-kuatnya. Jangan boleh lepas. Ngga nyeri? ... Sekarang begini... Lawan saya kuat. Ini juga ngga nyeri? Sekarang lawan saya ya bu ke atas. Lawan. Ngga nyeri? ... Sekarang kebalikannya ke bawah ya! Dorong! Kuat! Nyeri?... Kemungkinan besar sih ngga sampai retak tapi tendonnya kemaren kena nih! Sprained. Sprained itu bisa bikin bengkak juga, nyeri juga. ... 

Hah?? Serius?? Tegretol itu sekarang turun harganya! ... Oh yang mahal Keppra-nya... Murahan Siloam lho! ... Sekarang udah ada generik. ... Sebulan dulu aja. ..."

And of course our session always include private matters and ended with a picture together 😊 See you in 3 months doc!

46

 Today I open my eyes and see things with my heart.

I grasp the chaotic debris of my shattered self 

and catch a glimpse of the shining lights, 

which fill up the unharmed parts of my soul.

I'm crushed, I'm broken.

I'm blessed and I'm stronger.

Today I'm 46 and I accept the good and the best,

the worst and the unforgiven.

With serenity and for the sake of my sanity,

I'm welcoming the next chapter of my life

with lots of love, gratitude and new hope.

Amen.

Dear Kukka: You and Me

My baby, my beloved. My precious Godsend, my everything. 

It's been too long since my last rambling. If I should start again, why not now? 

And naturally, why shouldn't it be for and about us? 😚 

A lot of things have happened. Good and the worse. The unthinkable. The indespicable. I feel like I'm standing on hollow ground. Yet at the same time I'm floating here and there, not knowing whether I'm gonna land safely or shattered into pieces. I can see the broken glasses, filth and dirt. Every layer hurts so much it practically makes me feel nothing. As if everything just as it is, as it is, as is. Of course nothing is the same. I don't know what to say or how to feel or who to trust anymore but one. For this, I'm giving myself extra credit for still being able to find the unstained side of the dumpster. I can see without doubts that I have a bright side to hold on to. 

You 🥰 

Bebi... You and I are destined to enjoy this incredible ride together. Eversince love "flew" inside me and gave you life... ... Wait. That doesn't sound right but you get what I mean 😆 You and Bubu? We have each other's backs. You're my buffer. I'm your shield. You're my guardian angel. I'm your eternal protector. The fact that you are now a teenager makes it even better! Your sharp and annoying comments, your typical teenager Just-Leave-Me-Alone attitude, your I'm-gonna-shock-Bubu kind of questions aaaaaand our nightly super deep pillow talks... 😉 Every single thing makes our life, especially mine, better than greater. Probably 99% as I pictured it would be if I'm blessed with a daughter. Well I'm beyond blessed!! Although I must say that I'm still not physically and mentally prepared 😂 I mean like those arguments we had? The topics, the words, the physical gestures???? Practically taken out of Hollywood movies!!! 🤣 But like I said: This is why I always wanted and prayed for a daughter. My precious Godsend 🥰 

These past 13-going on 14 years have been one hell of a ride in every way. And Bubu surely is looking forward to many exciting years to come, as long as you're there. Bebi, I'll be right next to you. I love you 😘

About Dreams

dream

/drēm/

Learn to pronounce

noun

1. 1. 

   a series of thoughts, images, and sensations occurring in a person's mind during sleep.

   "I had a recurrent dream about falling from great heights"

   Similar:

   fantasy

   nightmare

   vision

   hallucination

   • 2. 

     a cherished aspiration, ambition, or ideal.

     "I fulfilled a childhood dream when I became champion"

     Similar:

     ambition

     aspiration

     hope

     goal

     design

     plan

     aim

     object

As much as I like to fantasize about stuff I don't dream very often when I sleep. When I do I usually forget about it minutes after I wake up. Aaaand I don't think much about it. But lately it's different. These couple of weeks I'm 90% sure that I dream every single night. It was not a big deal. Not until most of those dreams woke me up in fear, heavily panting, screaming & even drenched in sweat & tears. Yes. Those things happened. Sadly I don't remember what went on in most of those dreams. But in some I do... 

I think it all started when I had dreams about Bapa, my heavily missed father-in-law. I forgot how many times I dreamed about him... But surely it was more than 3-4 times. I remember the dreams were nice, sweet, gentle. Just like he was... One time in my dream Bapa asked me how I was doing. He came to me & we sat together on the swing (which also happened in real life). Bapa asked me why I always look so sad & as the dream faded away, so did he... He held my shoulder as I kissed his hand & said "Jangan sedih terus ya Ka..." Then poof! Bapa was gone. I woke up in tears because I still had a lot to tell him... 😢

After that I think my dreams got weirder... And more often. One time I dreamed about running in the middle of a heavy rain because I missed/couldn't find the car! 😄 I woke up hugging myself & shivering because my clothes were wet. In real life maybe the AC were too cold! 😆 There's also this one time when I had a nightmare like a really scary one. Like...demon & such. I was terrified & I woke up panting hard. I was practically out of breath. Why? Well because in my dream I was trying to escape from that god damn monster! 😄 Do you think this happened because I watched too many scary movies? 😂 

But the scariest dream I had I must say is that particular one where I lost all my teeth. One by one... Each started crumbling into small pieces. At first I noticed one tooth started to wiggle so I pulled it out. But then one tooth fell out on to the floor! I picked it up with trembling hand. Then from the back of my mouth every single one of my tooth started to crumble! Shattered into tiny pieces! I opened my mouth & the pieces of my teeth fell on to my hands. I screamed. I was terrified! I tried to find help but nobody was there. I kept my mouth closed so the pieces won't fall out to the ground. But there were too many! And tiny! I couldn't close my mouth any longer. So I opened it... Then the shattered teeth were all over the floor & seconds later I was practically drowned in them! I screamed. Then I woke up, finding myself screaming in real life. Some dream huh?! 😅

Before I had this terrifying dream I never look up or even try to make sense of any of the dreams I had in my life. I mean it's just a dream! Well except the ones about Bapa... From the very first dream I had about him I knew it was because I missed Bapa very much. And that I am still sad about his passing. As a matter of fact I'm typing this in tears like RIGHT NOW 😅 Yeah... But the shattered teeth & others???

So I started to google about the meaning of dreams. DON'T LAUGH! 😄 You know what?!? It turns out that dreaming about loosing teeth, drenched in rain & others are actually quite common! If you search about it, you'll find the meaning of those dreams. Do I believe it? Well... I can't say that I do. But it sure is fun & quite interesting to read 😊 I guess as long as it doesn't do you any harm then why not? Keep googling! 😝 

I'm actually more interested & curious in why I dream in the first place. Also why the dreams were THAT "powerful" they made me actually do or say things for real while I was sleeping. Sometimes I wonder what would happened if I laugh or cry or scream etc when my loved ones were sleeping next to me 😆 Hubs probably won't comment about it. But my super curious teenager girl? That'll be another story to tell 😆

What is success?

A couple days ago I had a long talk with an old friend. We talked about our lives, before - now and then. About dreams, goals, achievements and...other stuff. Eventually the conversation lead to the magic word: success. What does it take so people will see you as a successful person? 

Does it involve a big well-paid job? Becoming an accomplished businessman/woman? Company owner? Celebrity? Charity worker? Start-ups owner? Instagram influencer or Youtuber with millions subscribers? Or looking at the current "trend": becoming a highly religious person? I bet most of you will say yes. Those are considered the successful ones. The ones who have "meaningful" lives. What about you? You agree?

Meanwhile way behind lots of closed doors in parts of the world, there are housewives who lay their heads low and bust their sweet asses off to take care of their hubsands, children, households and everything that comes with it. From the eyes of the "successful" ones, it doesn't seem much. Or even nothing! It's nothing to be proud of. What they have in their minds might be "What so special about being a housewife??? What's so difficult about it anyway! Especially if she has a maid! All she has to do is giving orders. Every woman can do it! I can do it!"

Can you? Really?

Can you deal with the pressure that if something is going wrong at home, then it's your fault? Unpaid bills, wrong choice of soap, untrimmed grass, out of stock cooking ingredients? Can you deal with the mean whispers that if your child grows up not as the big family expected she/he would be, then it's your mistake? Poor grades, lack of socializing, bad manners? The list still goes on and I haven't even mention anything about patience, strength, fortitude, acceptance, forgiveness, content, confidence? And don't forget in our circle something crucial belongs to the list: religious.

Oh come on! Lots of career women can and already achieved what you've put on those list, Farika! Oh really? I say: bullshit. Flaunt all those colorful accomplishments you said you've got. I don't buy it. Whether you like it or not, life is about making choices and nobody gets it all. Obviously there's nothing wrong by being a working mother. It's about knowing what you want in life. 

I've always knew I wanted to be a mother, specifically to a daughter. Those who are close to me probably still remember what I had to go through to become one, physically and mentally. Some even labeled me as a very tenacious person and a survivor. Well... I'd like to say I'm lucky. So when I've been finally blessed with what I've always wanted: why on earth I would "waste her away"???????

This month my beloved Godsend will turn 13. Time goes by so fast. Too fast! Kukka is already in junior high and "suddenly" she will move out from our house and has a life of her own. I would love to spend time with her as much as I can before that time comes. I would love to put her to bed and still have our girl talk. I'd die to be the one who she would trust to tell that she's in love for the first time or telling me what she wants to do with her life. I hope I will be the one who hug her when she's heartbroken. I would pray that God would give me more time so I can always be there for her. And when I do, that is what I would call a success. If Kukka does see me as her biggest part of her life, that would be my achievement, my success, my evidence that I have a meaningful life. 

But that's just me. What about you?

45

Well hello there FORTY-FIVE!

To tell you the truth I had some doubts that I would make it this far. 45 years old. Despite of all the unfortunate events I've been through, I actually feel pretty good about myself. Maybe even better. Why? Well where should I start?

June 22nd, 00:00 o'clock I was at home with my loved ones, covered with a big warm blanket on a comfy bed. I'm healthy, considering. No seizures, no headaches. Then my phone kept on beeping because families and friends started to shower me with heartful birthday wishes. From distant family members to ex boyfriends, from loving friends to acquaintances. Some sent me long and meaningful messages. Some sent me cute emojis and colorful GIFs. One friend I know, a director I used to work with, even sent one a day early 😆 I was especially psyched when I received a message from dr. Rocksy, my neurologist. The first thing that popped in my mind was "Well I made it this far is because of you too. So thank YOU!" 😄 From midnight to midnight again I still received birthday wishes in every apps I have on my phone! I tried to reply every single one of them but please forgive me if I did miss yours 😅

Anyways on my birthday morning I went out to the patio, enjoyed the fresh breeze and the beautiful colors in front of my eyes. The first thing I felt was feeling grateful. I remember once I've stumbled upon this quote "If we do not feel grateful for what we already have, what makes us think we'd be happy with more?" 

This year there was no spending nights in our favorite hotel, no birthday cake and candles or birthday dinner or lunch. We did went out to get my birthday present though. That was the only reason we left the house 😆 Before bed we snuggled together and watched Luca, which btw is a very nice movie. And that my friend, is more than enough for me 🥰

As for my so-called plan for the year ahead, first thing first: accepting reality, not questioning too much, happy thoughts and taking things easy. I also want to be more around people who make me less worried. This is particularly important to me! Less "What ifs" and more "Let's!" All my life I feel like I'm always worried... "Takut ini." - "Nanti itu." - "Gimana kalo nanti gini." - "Awas nanti gitu." It's tiring and evidently it's eating my brain alive bit by bit. The second I'm worried or anxious about something, certain parts of my brain hurts. Like for real! My frontal and temporal lobe hurt. It doesn't feel like a normal headache. It feels more like something sharp is poking the brain, again and again and again. AND THEN a giant rock falls on the top of it and stays there until... Well... In my case until I take my pills. So you see? I don't want to add more pain and huge burden to my injured brain. Most importantly I don't want to pass on this particular bad habit of mine to my cheerful daughter. And hopefully by having a positive mind despite of all the bad things in life that is happening right now, let's just see if it does any good to me. And to you too. Fingers crossed.

Bonus: I've stumbled upon this article about How To Stop Worrying. Worth to read.

Just Another Manic Sunday

It's just another Sunday. I'm at home with my daughter & our kitty, doing our own things, & we are all healthy. What more can I ask for? 

Loud noises are starting to come from everywhere. Kids laughing & screaming. Cars & motorcycles. Right now I can hear the ambulance siren blaring loudly from outside the cluster. I hope it's nothing serious... Birds are chirping right outside the windows. Sometimes I wonder whether they are the same birds with the ones who always sing in the morning. I can hear Moochi snoring. He's taking a nap on the dining chair next to mine. That's his current favorite spot. In short, nothing is unusual. Someone once asked me if I ever get bored because it seems that what I do every day is always the same. My answer was: no. Because it true. Nothing is the same, really. 

Since this whole COVID-19 School-At-Home thing I'm at home 24/7 with our 12yo daughter. Sometimes I wish she'd go out with her dad more. But oh well... I think it should be them who solve it out. Not me 😋 I just hope SiBapa won't be too sad or disappointed or too late to realize that his daughter keeps on growing. Then just like that #FINGERSNAP The time when Kukka chooses friends over her parents will come #bigsigh Even now the things she does-says-asks-wonders-and others are already different. AND CHALLENGING! In shāʾ Allāh in 2 months Kukka will turn 13. An official TEENAGER. Oh god... I know this might sound cliché & boring but it's true. My baby girl doesn't have the mind of a typical (almost) teenager. The comments she gives. The questions she asks. The actions she makes. Lately I have this weird feeling that my daughter will be the one who teaches me about life. Not the other way around. Many times I even think that our daughter might be psychic 😂 Well... That's another blogpost to tell. 

Every weekdays I have 2 maids who work in our house from morning until late noon. They have totally different personalities but they get along quite well. Dewi & Yuli like to tell me stories about their lives, here in Jakarta & in their villages. What kind of traditional food they cooked with their mothers & grandmothers, what games they played when they were kids, what kind of troubles they've done. Sometimes, after a lot of "Maaf, Bu..." it is them who ask me questions. The range of questions can be from what is it about that I'm watching on CNN to what is the english word for- 😁 Yes. Dewi & Yuli are learning how to talk in english & it involves a lot of laughters. It was SiBapa's idea & both of them are enjoying it. Of course there are times when the maids are frustrated about it but I think they are grateful too. And then there are times who is ME who's wondering what on earth the maids are talking about. They talk in javanese & most of the times it includes lots of loud laughters. Dewi said one of the reasons why she gets along with Yuli is because they come from the same part of Java & both are the same age. So what they experience, from childhood to marriage life are pretty much the same. So you see? The maids are another reason why my day-to-day life is always different 😋

Taking my daily walk around the block is another story. To you it might sound boring but to me 30 minutes walk feels like a month of adventure. Because of my health walking around 3 houses can be tough & challenging 😅 But also fun! Our cluster is pretty big to walk around & there's lot of things to see. There's a basketball court where the boys shout, fight & play, usually with no sandals. Even now I'm still wondering how they do it. I mean doesn't it hurt their bare feet??? Then there are 2 playgrounds. Usually full of smaller kids with their mba/nannies who feed them milk & snacks, sometimes even very early dinner. Awkward part of my daily walk is when I meet the same person over & over again. Which means we (have to?) smile at each other or at least nod our head again & again 😝 There is though, 1 woman who always takes her daily walk at the same time & never says or even smiles at me whenever we cross each other. I think she takes her walk very seriously 😉 Me? I just enjoy it. Eventhough I walk quite fast I do take the time to "observe" other people's houses. You can tell a lot about a family from how the house look. And of course the kids. You can tell quite a few things about a family from how the kid behaves.

Healthwise is still a very big adventure. Not only for me but sadly also for the people around me. Especially my pretty girl, who I've mentioned above, spends every minute of her day with me. Although now Kukka can take very good care of her Bubu but still... I can see the worry in her eyes whenever I have the lightest seizure. 15 minutes ago I had to stop typing because I could feel a light seizure was...on the way. Which means second seizure of the day, 4th this week. I didn't want to make my baby worried but I also didn't want to get another chipped tooth or a bruised eye. So I laid down on our new super comfy sofa & just breath. Later I realized it was time for the pills... AND next month I have to see The Rocksy! Okay! That one will require a special blogpost 😆

So you see? I'm having 24/7 adventure every single day. Don't you agree? 😉

Parenthood

Probably one of the most complicated things in life. As a mother. As a father. You can't be too hard on your child nor too easy. If you want a perfect child you have to do it just right. Which is obviously impossible. Especially when you're raising your child together with your spouse #Duh Well you know what I mean, right?! Both of you are involved, commited? When it comes to parenting, there will be tons of stuff both of you would disagree with each other. Especially if one of the parents still sees/considers the child as a baby 😅

You think letting your child go biking on a rainy day is bad. Your spouse think it will make her body stronger. The father teaches the child to be polite. The mother tells to just brush other people off. And the list goes on. What most of us as parents often forget is that a child also learns from what she sees and listens. As simple as that. You want your child to be polite. Yet never once you say "Excuse me" or "I'm sorry.". You want your child to be honest. Yet you lie on daily basis. You want your child to be nice. Yet you raise your voice and blame others. You want your child to love you. But first, when was the last time you say "I love you" and mean it?

From the matters you are thinking to the actions you are making to the words you are saying. Your children listen and store everything deep inside their brains. Later on there are possibilities: 1. They will become exactly like you. 2. They will and want to become much better person than you. 3. They will become the person you despise or worse. Maybe there's more. Just leave your comment below. And later on your child will either love you or hate you for it. Some might even need lifetime therapy. 

I personally consider myself to be a very lucky person. I've been raised in a very loving family. I'm sure I've talked about my Mom and Dad, my big sister and big brother like A LOT! 😝 Why? Well... It's because I respect and love them and I love saying and showing it again and again and again. There are some...complications on my side of life story. But the amount of love I've received these past 44 years from my loved ones has been overwhelming, some might be unnecessary or even annoying. I'm sure that's how Kukka feels about her Bubu nowadays 😋 The best part now that she's almost a teenager is how Kukka and I can open up about lots of things. Some even adult stuff 😉 SiBapa also plays his role as a father. Whenever this cute father-daughter couple spend time together they leave SiBubu alone at home.

Anyway... My Precious Godsend and me? We pour our hearts out, share our secrets, what-ifs, fears and regrets. I share my feelings to my girl so we can understand each other better. I advice my daughter not to make the same mistakes I've made. I show my girl how to be strong and patient in the middle of a storm. In short, I try my best to be a good person, for me and her. Because, hopefully, there's a long life ahead of us which we will go through together. As mother and daughter.

And so the parenthood adventure continues. 

SUDEP

SUDEP: Sudden Unexpected Death in Epilepsy. I didn't even know there's such thing until I found a mother on Twitter with the username: @bugsme012 who tweets every single day:

"Every day in memory of my son and every victim of SUDEP"

I think I found her twitter because @BrainAblaze retweeted the tweet and I'm following @BrainAblaze... Then a couple of days later I heard the news that a certain young celebrity passed away because of SUDEP. Cameron Boyce was only 20 years old when he died because of complications of epilepsy. He died in his sleep after a seizure... And then I was like "Huh??? You really can DIE in your sleep after a seizure???" After that since Anti-NMDAR Encephalitis is pretty much related to epilepsy, I'm starting to dig more about what SUDEP is.

Apparently according to Know SUDEP Now, Sudden Unexpected Death in Epilepsy, while rare, can occur when a person with epilepsy dies because of a related accident or seizure emergency. You have an increased risk of SUDEP if the tonic-clonic seizures in your sleep are uncontrolled and you sleep alone. So now I know WHY there are times when I wake up drenched in sweat and panting heavily as if I just run up and down the stairs for 2 hours!!!! Yes, it happened. I have a seizure and then I fall asleep. But I wouldn't know if I don't wake up with my tees soaking wet, my pillow has a giant drool island or some body parts hurt (because I hit something accidentaly). There are also times when I just wake up in shock and ask myself "What the fuck just happened????" SUDEP occurs more frequently in people whose seizures are poorly controlled though. So hopefully when I take my medicines on time and avoid stuff that can trigger seizures umm... I guess...I'll be safe? Fingers crossed! Avoiding the physical stuff is easy. The emotional ones on the other hand... 

Sleep seizure or also known as nocturnal seizure disrupts your sleep and makes you dizzy during daytime, which can increase the risk of seizures. Why? Because lack of sleep can also increase your chance to have seizures. Unfortunately going to sleep is not that easy for people with epilepsy. Why? Oh it's complicated :)) According to Epilepsy Action Australia, diagnosing nocturnal seizures can be difficult because they happen during sleep, and the person may not be aware of them happening. Yup! That's true :)) It even happened to me during EEG and I didn't know! Of course my beloved dr. Rocksy already explained to me these types of seizures. Unsurprisingly I forgot all about it BUT fortunately I already blogged about it :) (Doc Rocksy Menjelaskan) Now I've become aware of this SUDEP thing which turns out to be...possible. I wonder why dr. Rocksy never mention about it to me though... Or maybe she did??? 

Anyways... Now I understand... No wonder my daughter and the maids like to check up on me when I'm sleeping or just chilling in the bedroom. Kukka would get close to me while I'm lying on my bed and she touches my arm or just calls my name. Sometimes while we're busy doing our own things, Dewi would knock on my bedroom door, calls me and takes a peek. Or Kukka would just screams out my name from her bedroom using that loud and cute voice of hers :) Apparently I had seizures during sleeping and my daughter witnessed those moments. My poor baby must be quite traumatized :( I talked about it with Kukka while I was writing. Her response:

"Now I'm calmer because I know what to do to help you." -Kukka-

How can I NOT love her THIS much. My beloved precious godsend :*