The Second Lucas T. Ahn Family Scholarship

 I have finally picked a winner for the 2023 Lucas T. Ahn Scholarship. Congratulations, Nadia Wallace at the University of Tennessee! Luki May never attend university but that doesn’t mean his life didn’t help others achieve their dreams!

"Before Enlightenment: Chop Wood, Fetch Water. After Enlightenment: Chop Wood, Fetch Water."

In Korea as well as in other countries with a large Buddhist following such as Thailand and Japan, there is a tradition among Buddhist monks who take a vow of poverty and abstaining from all worldly possessions, walk among the people asking for alms; mainly, for a few coins or a bowl of rice with vegetables without animal proteins as they are vegetarian in observance of the sanctity of all sentient beings. The monks would trek down from their temples located high up in the mountains to the cities where lay people live wrestling with various forms of suffering in their lives.   As a child, I remember hearing the sound of their wooden Mok Ttak - a handheld prayer drum carved out of apricot wood which makes a crisp, hollow sound and also hearing chants of Buddhist scriptures before seeing them in their unique gray garb, barefoot and with their faces hidden under big straw hats. They had a small bowl for a scoop of rice and some vegetables and nothing more. After receiving their offering, they would bow deeply, offer a prayer of blessing to the giver and gratitude for the offering and be off hitting their mok-ttaks and reciting their chants to the next house. As a child, I found their presence to be mysterious and otherworldly and didn't quite understand the motivation behind their practice.  

As I interpret it now, the monks were surviving off the grace and compassion of people.  They were offering people an opportunity to practice the virtues of compassion and generosity for another being who has taken a vow to disengage in worldly pursuits and devote their lives to the practice of elevating the consciousness of humanity.  Begging for food is a humbling experience and one which requires pride and ego to be set aside which is one of Buddhism's very important tenets. This motivation isn't so obvious to people of lesser spiritual growth who could not recognize an advanced and enlightened soul but has judged them just as a beggar and a nuisance to be shoo'ed away. And, I have witnessed some being badly treated by shopkeepers and laypeople who are resentful that while they work hard at earning a living, the monks are just freeloading off their diligence and effort and often heard groans of, "here he is again today....".  

What is the soul contract the monk has made with God to endure the hardships of this life?  

It goes to show that just because you become enlightened doesn't necessarily mean your life is made easier as stated in the Buddhist phrase, "Before enlightenment, chop wood, fetch water.  After enlightenment, chop wood, fetch water".  Like the profound ironies so beautifully written in the Dao, nothing is really different and yet everything has changed and the enlightened soul must still carry their cross even after exclaiming, "Eureka, I've got it!".

Today, as a mother of a child with Dup15q Syndrome, a condition which makes his independence impossible and without a clear and obvious role of his contribution to society, I ponder on the monks' practice and find a similarity to people like my son.  My son can be seen by some as a burden on society, too.  His survival and quality of life is solely dependent on the love and compassion of those around him. He requires great medical attention and 24 hour care, perhaps for the rest of his life.   Even just going to the dentist to fill a cavity is a major ordeal as he needs to be under general anesthesia.  The first dentist we consulted told us there is a 2 year wait period because my son's cavity is not deemed severe enough and the dentist has cases of kids with abscesses in their mouths with much worse conditions who get priority treatment. In the meantime, I worry and fret about possibly needing a root canal if the cavity does not get filled soon.  Luckily, after calling many dentists, we found one willing to fill his cavity within 1 month at an outpatient surgery center accompanied by nurses and an anesthesiologist.  He needs the aid of government agencies like Social Security and the Regional Center, health insurance for the provision of equipment/devices that help him function in society as well as individualized educational accommodations but most of all, he needs the love and acceptance from his school, church, family and the community. 

What is the soul contract my son has made with God to endure the sufferings of this life?

The monk. My Child. The rejection.  The love and respect.  An opportunity to practice compassion.  The realization of our higher spiritual consciousness.    Being able to see the bigger picture of life. The realization of our higher purpose on Earth. Witnessing the divine (and sometimes, not so divine) nature within people.... These are all beautiful things to witness, experience and from, grow.

This journey is no easy feat but what I focus on seems to grow bigger.  My focus is growing sharper every day as I learn and grow from the daily encounters with my son and the people who are involved in my son's life.  And, I aim my focus on things that are beautiful and uplifting. 

Mantra of Light

Excerpt from a Reading with Summer McStravick

 

I wonder often about the meaning of Luki having Dup15q Syndrome.  Sometimes, nothing really makes sense and obsessing and overthinking about meanings can be exhausting and draining.  Recently, on the Dup15q family group page on Facebook, some asked, "What does believe mean to you".  "Believe" is the motto for this organization.  That is the exact question I needed to organize my thoughts and put it down into words below.  Funny how sometimes you have the answers but you don't quite know the question they answer.

This experience is what I believe it to be.  Nobody else's interpretation is as important as my own.  Whether I wallow in victimhood or see this experience as an opportunity for growth, other people's opinion on its correctness is irrelevant. So, let's make the most of it.  

1. I believe there are no mistakes or accidents. 

2. I don't believe people have special needs; rather, I believe people have basic human needs."  

3. I believe Lucas is a beautiful, evolved soul who incarnated into great disability for his, as well as everyone's, soul growth. 

4. I believe (as crazy as this sounds) that I chose this experience and made a contract with God even before I was incarnated to go through this experience for my own soul ascension and expansion.

5. I believe Lucas is more than his diagnosis and is capable of giving and receiving love and is capable of doing more than what his diagnosis assumes.  

6. I believe this experience entails heartbreak, hardship and difficulties along with moments of beauty and laughter but one day (perhaps not while on Earth) the reason for all the "why's" will all be revealed to me by God and I will be at peace with the reasons.  

7. I believe Lucas has a right to fair and appropriate education and is entitled to appropriate accommodations to meet his needs in society, as stated by law. 

Recently, I was lucky to have had a personal reading with Summer McStravick, the creator of the Flowdreaming method of manifesting.  She has the gift of telepathy and it is so useful to know someone like her when you have a nonverbal child.  She doesn't do readings often as she is more focused on the ME School and doing life coaching, so what a treat!  She hit the nail on a lot of stuff going on in my life but I'd like to share the bit regarding Luki and his disability.  

UCSB-Family Vacation Center July 23-July 29, 2023

 

Our amazing summer at UCSB-FVC.  Family carnivals, reptile show, adults karaoke, family bingo night, beach bbq, making pizza at Woodstock's Pizza, trip to the zoo, talent shows, dolphin sightings at our sunset bonfire with smores, dinner at Glen Annie Golf Club, pool races, hikes and bike rides, baseball game, etc, etc, etc...

Autism Awareness/Acceptance Month Speech

Thank you everyone for showing your support for autism awareness and acceptance month by wearing blue and for being here today.  My name is JiYoung and I have an 11 year-old son, Lucas, who has a rare condition called Dup15q Syndrome which is only one of a handful of known genetic causes of autism.  My husband Gabriel, Lucas and our 6 year-old son, Liam, and I have been coming to LifeSong since 2018 and feel very fortunate that the pastors and Brenda were so welcoming about us starting a ministry for children and teens with special needs.   (Anna's introduction?)

Living with autism and other neurodivergent conditions can be challenging for the whole family but having awareness makes it a little easier to be in the public.  It means rather than being confined at home watching videos, we can board planes, take walks in the parks, go shopping and take vacations without people being afraid or staring at us as oddities or freaks.  We've had various reactions to our son over the years, but mostly positive due to people "getting us" thanks to campaigns of autism awareness that advocacy groups have promoted in recent years.

One such time was when we were on a flight to Seattle last year and Lucas would kick the seat in front of him.  The woman sitting in front initially was startled but then she took a look at him and turned around and didn't complain or acknowledge him at all throughout the whole flight.  I was mortified that we would end up on Inside Edition for an episode of violence in the air but when the flight landed, she and her husband, a very large and heavily tattooed man, turned around and said "he did well.  He did better than I thought"  (I'm not sure how bad she was expecting things to be...). I had so much gratitude for her remark and felt an immense amount of relief.  I think when she saw him it clicked for her that he wasn't being bratty but may have a cognitive disability and decided to show grace towards him.  This is the power of what awareness and acceptance can do for people.  

 The statistics are that 1 in 63 children are diagnosed with autism and there is no known cure.  Over 75% of couples with autistic children end up in divorce due to the overbearing stress of caregiving. Disabled people, especially those with cognitive disabilities, are the most discriminated subgroup of our country, if not the world.  

Though greater awareness and acceptance, we hope to promote fair and appropriate access to educational opportunities, medical care and rights for access to housing, employment and the opportunity to praise and worship God at their own developmental level.  

I've been asked how do I tie my understanding of a loving God with having a child with autism and was reminded of one of the miracle stories of Jesus.  

 In response to His disciples asking who has sinned for a blind man in John 9:3, Jesus responded, "No one sinned, it happened so that the works of God will be made known through him. "  It's not just that Jesus healed his blindness but the work of God which Jesus refers to (I believe) is that people with disabilities can impact other people's hearts to be more loving, compassionate, and understanding .  And that truly is the ultimate work of God.  I know my son has changed my heart in so many positive ways and my efforts to advocate for his needs has also benefitted countless other individuals with his condition. In his behalf and others with his condition, we have set up the annual Lucas T Ahn Family scholarship to encourage talented undergraduate students interested in researching Dup15q Syndrome.  I have participated in fundraisers and virtual walks to support advocacy organizations and hope to participate in the Orange County Marathon Festival in May. I have sat in on review boards of organizations that fund research grants.  I would never have participated in any of these had my son not been in our lives and it is a testament to the truth of Jesus when he said "it is so that the glory of God would be made known. " Everyone is divinely created and has purpose and value in God’s economy.  I pray you would also be blessed by their presence and come to see a glimpse of the glory of God through them. 

Thank you.

How do I Tie Autism to My Understanding of a Loving God and My Own Spiritual Journey?

For Autism awareness month this year, Anna (a cofacilitator of the special needs ministry) and I have been invited to speak to the church congregation a little about "autism awareness".  I haven't finalized any plans for presenting but doing some research on Youtube, I came across a video that emphasizes autism acceptance much more than autism awareness.  I pitched a video of autism awareness to Anna but she agreed that it was much more important to emphasize acceptance of the condition if we want to see positive change in attitudes toward those affected by autism.  So, we decided that instead of showing a video of what autism is, we will create a slideshow of all the wonderful things the children in Harvest, the special needs ministry are doing to praise and learn about God.  

The first and only walk I did was a virtual one during the pandemic because we could not gather.  I had a shirt that said "I Walk for Dup15q because I don't run". And a virtual walk was even better because  all I had to do was wear the shirt, sit on the couch and watch Netflix.  

But in all seriousness, we need to go beyond just being aware of what autism is to ways in which we show acceptance to people who have the condition.

1.  Autism awareness is knowing that 1 in 63 children are diagnosed and there is no known cure.  Acceptance is making sure advocacy for greater research is made to understand it better which one day help minimize debilitating symptoms.

2 Awareness is knowing that disabled people, especially those with cognitive disabilities, are the most discriminated subgroup of our country, if not the world, Acceptance is making sure they have fair and appropriate access to educational opportunities, medical care and rights for access to housing, employment and the opportunity to praise and worship God at their own developmental level.  

3. Awareness is knowing that words such a retard, "special", idiot, etc... are derogatory terms that is inappropriate to use for people with autism or other cognitive disabilities.  Acceptance is not using them to make fun of or put them down nor use them as adjectives in everyday language.  I've heard even doctors describe a difficult personality as "he's just very "special".  How we treat people with cognitive disabilities may just be a test from God to see who we say we are, is aligned with who we truly are. 

 If it is hard or uncomfortable for you to be around someone so different, that is OK.  No pressure.   We all live at different levels of understanding of God's purpose for everything so just be true to yourselves and acknowledge your own comfort levels.  Just don't be derogatory and mean.  Every child has a mom and dad whose hearts break when they are treated with cruelty and made fun of.  A simple prayer for their well-being would be much appreciated. 

4. Awareness is knowing that 80% of couples with autistic children end up in divorce due to the overbearing stress of caregiving.  Acceptance is showing compassion and advocating for the whole family to deal with their unique situations and lending moral support, as needed.  

How do I tie autism to my understanding of a loving God and my own spiritual journey? 

I've come to understand that a community who has a healthy regard for people with disabilities is one in which God's presence shines brightly. If you look at war torn countries, where killings and genocides run rampant, where there is much confusion and hate, you will not find children with disabilities flourishing, if existing at all.  When the Nazi's took power in Germany, the first group of people they exterminated were not the Jews but children with special needs because they did not fit their narrative of a "master race" of perfect people.  The devil must be afraid of children with cognitive disabilities to want them gotten rid of because despite all their flaws, inabilities and a dependence on so many others, these little souls help highlight all that is good in people to shine brightly. They engender feelings of compassion understanding, kindness, love and patience, qualities that dark forces want to extinguish.  When God made a clarion call for souls to go to Earth to be nonverbal, be considered less than fully human, and have little to no control over their physical bodies and its functions for His divine purpose, I'm sure not many souls signed up for the task.  It would be better to request becoming a doctor, musician, teacher, an actor anything but autism or intellectually delayed; but, the very rare and beautiful ones who raised their hands and said, "I'll go".. well, can you imagine what the heart of God must have felt at that?  

HCS-CH Field Trip to Heritage House, Santa Ana 4/5/23

 

World Autism Awareness/Acceptance Day April 2, 2023

"Awareness seeks to highlight how Other we are and emphasizes the differences and distance between our ways of being. Acceptance looks at commonalities we share and at the strength inherent in diversity."

"Awareness is simply realizing that someone has a challenge. Acceptance is engaging in a real conversation with them."

Last Sunday at church for International Autism Awareness month, the children blew "bubbles of kindness" to remind them that "although we may be unique, we all deserve kindness, love and acceptance". 

For this Autism Awareness/Acceptance month, I want to focus on how much awareness had made a positive difference in the lives of those who are differently-abled, autistic and cognitively delayed as compared to the lives of these individuals from previous generations.  Also, I want to emphasize how much the health of a loving, egalitarian and peaceful society lies in the presence and thriving of people with disabilities in it.

All over the world, throughout history, we have seen discrimination, harassment, lack of access to education and healthcare for people who are intellectually delayed and unfortunately, this trend still prevails today especially if the individual lacks strong advocates by way of parents or family in their lives. This group of individuals is the most discriminated in this country, if not the world.  In the past, people with epilepsy were branded as devil possessed.  In fact, the word "grand mal" which is the worst kind of seizure wherein the entire body shakes and violently gyrates is literally translated from Latin as "the great evil".  People believed those who suffered seizures were possessed by an evil spirit and were subjected to the most awful and tortuous treatments such as leeching and electrocutions, and worse.  In some Asian and African cultures, they were shunned by society as harboring bad luck and were not even permitted the opportunity to live.  Even just as far back as 100 years ago, parents with children who were deemed intellectually retarded were advised by physicians to place them into institutions, forget about them, have more children and move on with their lives.  The infamous  Pennhurst State School and Hospital comes to mind where a sadistic physician used punishment as so-called treatment and therapies and left many traumatized and even dead at the swift stroke of a pen on fraudulent death certificates.  In these sterile institutions, they were subjected to the worst form of abuse from doctors and caretakers with no one aware of their plight nor anyone to rescue them.  People in society didn't seem to care (or were unaware of the atrocities)  as they were treated as burden on society and expendable.  Many of the perpetrators went unpunished. When the Nazis took power in Germany, the first people they exterminated were not the Jews but intellectually disabled children as they did not fit into their narrative of a perfect race of people they were trying to create or believed themselves to be.  What did their lives mean to anyone?  In the space and time these souls occupied it is hard to see the great work God was doing through them. They required so much care and resources to keep alive. Many never spoke.  They had no control of their own bodily functions. How are they contributing to a better society?  

100 years later, I can emphatically say their lives and their suffering means the world to me, my family, countless others living with various forms of disabilities and their families.  All their suffering and pain were not in vain because my family has directly been helped and our lives made better by their experiences. Through the expose of abuse and violence (thank God for great journalism!), we now have doctors who no longer prescribe parents to abandon their children but rather, encourage them to nurture their children at home and advocate for equal access to education, medical treatment and therapies.  Parents are able to send their children now to local schools to receive fair and appropriate education at their own school districts.  Advances in adaptive behavior therapy allows for a more humane and effective ways to train behavior rather than by punishment.  A Disability Act has made into law special accommodations for them to be integrated in a more inclusive society.    Countries throughout the world envy and hope to emulate what the US has done on behalf of its disabled citizenry.  The United Nations has deemed people with intellectual disabilities are entitled to basic human rights.

None of this would have been made possible without the advocacy of people who came before us.  The children and adults who suffered at Pennhurst Institute are not forgotten.  Their suffering, imperfections and weaknesses has made way for God's power to be made closer to being perfect.

This is how God works.  Although we can't see how weakness can be used to do great works, all suffering can be transmuted to something that benefits others, if we are willing to take action and open our minds.  And that may not be evident in the space and time we inhabit right now as we try to navigate ourselves through endless therapies, doctors' appointments, fights with insurance companies, trying to tame intractable seizures but, I have to believe that somewhere, somehow it is all making a positive difference.  

People like Lucas have always been here and always will be here no matter how some people and ideologies will try to get rid of them.  They are emissaries of God's presence and Light in a healthy, loving and well-functioning society.  In their absence, you will find a dysfunctional society where wars, killings and chaos run rampant.   If you look at a war-torn society, a society racked with confusion, hatred, distrust, the first ones that are absent are very special people like Lucas. They are the litmus test of a functional and healthy society.  

What a long way this community has come to making a more equitable society for all!

History Repeats Itself.

 I have always been fond of hearing music coming from afar, perhaps from another room or faintly heard on the radio.  It trains the ears to listen more intently and focuses my mind to hear it like a memory of long ago. I get a visceral otherworldly feeling especially if it is an old tune and it can trigger a pang of melancholy in my heart.  A similar sensation happens while experiencing a warm sunset in Autumn as I meditate on shadows of leaves blowing on a wall. What's even more beautifully melancholy is when I hear sweet innocent voices of little children singing, off key, during a church service or school performance.  I remember attending a public Evensong at the former Crystal Cathedral in Garden Grove and hearing little school children singing praise music totally off key and thinking how inappropriate the setting was for their flawed performance.  One would expect a grand choir akin to that I heard in York Minster in England while I was studying abroad.  Those children were like professional singers whose voices were as impressive as the grand cathedral of their venue.  I noticed a sideward glance of someone who looked like a tourist from Europe rolling their eyes and looking quite unnimpressed by the childrens' performance.  He may have been expecting something similar to what one hears in grand cathedrals of Europe.  But, I so enjoyed their sweet voices and their innocent excitement at being on a "grand" stage.  How sweet it would have been to hear the children singing off key, in their excitement in a smaller, cozier setting.

As I listen to my little 6 year old boy practicing piano in the other room, my mind drifts to memories of my father and the stories he told us about his family's travails during the Korean War.  He would tell us how while they were starving due to food shortages, the American GI's would come by in their jeeps and throw mysterious dark bars of sweet and delicious "food" as they drove off.  He found out decades later that it was Hershey's chocolate bars. 

His older sister would recount stories of heavy loss from the war including the loss of 4 siblings; one, just barely 15 years of age made to hold a rifle and march to the Angang river to fight the oncoming North Koreans and Chinese and how shell shocked and traumatized he was from the experience.  He did not make it out alive from the war.  My grandfather, as told to my mother from her mother-in-law, was a habitual drunk who would oftentimes be found passed out in the forest unable to make it back home from a drinking binge and arriving with mosquito bites all over his body.  Legend has it that he was raised by a mother whose temper was so fiery that she could, in a fit of rage, jump from the living room to the front gate in one lunge. It makes me wonder if mental illness and addiction was something that was passed on from generations back.  My grandfather was branded as being wanted for treason against the Empire of Japan during the time of Japanese colonization of Korea had to flee Korea in the dead of night to the Philippines to save his life. Little did he know the Japanese were there, too. In reality, I wonder if he was not so much a nationalist resistance fighter but a loud-mouth drunk who said inappropriate things at the most inappropriate times.  Is it defiling my ancestors by saying such things?  On the contrary, I appreciate them more as they shed so much light into why my family is the way they are now, in this generation.  My grandfather passed away when my father was just a little boy and unable to care for the three surviving children, my grandmother sent my father away to be taken in by his uncle's family to be an apprentice to learn the trade of photography but in reality, he was treated more like a house servant.  My father always resented his uncle and his wife who showed so much favor and love to their only son, my father's cousin, while he felt unwanted and unloved.  In his adult life, he was also an alcoholic who drank his livelihood and marriage away.  My mother would rationalize his physical and verbal abuse towards her to the fact that he had an upbringing lacking love and affection and not because he was a bad person, a rationale I had trouble accepting. But with age, maturity and life lessons, I see how unresolved emotional pain can fester and ferment in the heart then be explosively released onto the most important and loved people in one's life.  The boss abuses the employee, the employee goes home and abuses the wife, the wife hits the children and the children in turn kicks the dog. What is the best way to stop this cycle?

When the Japanese left Korea after the colonization, many of its citizens left behind their livelihood.  My father's uncle received all the camera and photography equipment from them as they fled back to Japan and so started a photography business which my father also took up as a successful profession and was at one point getting yearbook contracts from many high schools in his town before he drank it all away.  My aunt would relate stories of how patrolling Japanese soldiers would play with the children in the streets and in particular show a fondness for my father as he said and did very cute things.  Many of the soldiers were using the children to extract information about their family lives, where they hid their wealth such as silver and gold and to find out who was speaking ill of the Japanese occupation.   My mother told me of how her older sister, in her innocence and naivete, led Japanese soldiers to her backyard where my grandparents buried their silver and gold.  For some reason, the soldiers did not confiscate the precious metals but counseled my grandparents to bury it back and not to tell anyone they had it. Who knows why they didn't confiscate it but it sure does demonstrate the humanity of people.  I'm sure those Japanese soldiers would rather be in Japan, watching their own children grow up and building up their own livelihood than occupy a country that disliked them and wanted them out and resented their superior's orders to use children to extract information.  I wonder how much guilt my aunt lived with all her life for what she did.  She was only a child and didn't understand the guiles of adults. What a way to lose the childhood innocence of trust and faith in humanity.

This world moves, twists and undulates around a spiral of pain, loss, suffering, disease, war, famine, drought, death as well as love, peace, kindness, learning, redemption, relief, hope.  Sometimes, it's all just a little too much to bear, isn't it?  Where is this spiral leading to? What is at the end of this seemingly never-ending spiral?  I heard a Nihilist quote, "If nothing really matters, then the only thing that matters is what we do" because our actions (and just as importantly, our thoughts) shape reality not just for ourselves, but for others, too.  

I pray humanity will choose wisely their thoughts and actions.

Clinical Trial of some FDA Approved SSRI's for treatment of seizures in Dup15q Syndrome and serotonin/dopamine supplements

An unbiased drug screen for seizure suppressors in Dup15q syndrome reveals 5HT1A and dopamine pathway activation as potential therapies - PMC (nih.gov)

How fascinating and clever is this research study done to find already FDA approved drugs to treat seizures in Dup15q Syndrome!!! This bypasses drug discovery starting from scratch which can take decades to create the drug, do clinical trials and then get FDA approval, time my son can't afford to loose.  This group must have felt the urgency of parents to find seizure treatment and bypassed all that work and went straight to a databank of already FDA approved drugs and engineered drosophila flies that mimic Dup15q Syndrome and screened them for seizure reduction against a variety of drugs.  It turns out that drugs that showed most promising belong to a class of antidepressants notably Mirtazapine (trade name, Remeron).  In jist, these drugs modulate serotonin levels in the brain much like SSRI's. The mechanism of action is by stimulation of serotonin receptor 5-HT1A while inhibiting another receptor 5-HT2.  They showed that if 5-HT1A is inhibited and receptor 5-HT2 activated, the seizures get worse.  The results showed over 55% reduction in seizures with Remeron followed closely by Lyrica and wellbutrin.  The principal investigator stated in an interview that a new antidepresant drug trintellix/Brintellix may have more specificity to a target site than Remeron!  That is exciting and promising news!  About 10 years ago, I suggested to a parent support group that given the symptoms so many with the syndrome experience such as anxiety and GI issue that serotonin levels were low and maybe SSRi's could help with the syndrome, although I wasn't thinking of seizure control at the time. I considered adding 5HTP or other serotonin supplements to Luki's diet but gave up pursuing the idea because he was so young at the time and I was already experimenting with DHA, accupuncture, CBD oils, creatine, CoQ, etc... I wonder now how his seizures would have been controlled had I started him on the supplements.  It is really hard when there is no one else giving it to their children and all I am going off is my hunches and intuition with no confirmed scientific data.  I had to wait 10 years for that! I need to listen to my intuition more often! The thing is, when I first got the diagnosis, I was in fight or flight mode and we've heard of people who obtain supernatural abilities and strength in dangerous predicaments.  There have been stories of mothers able to lift heavy trucks to save their babies in danger.  I think in the beginning when I was in the flight or fight mode, I had so many ideas come to me (not so much now, I've grown accustomed to the condition) most of which I had no ability to pursue.  Had I gone to our neurologist 10 years ago and requested SSRI or Remeron for Lucas, they would have labeled me as "that crazy mom" and shrugged me off.  I also remember a lively discussion with another mom linking sodium channel modulators in the brain of Dup15 to control seizures.  I never followed up with it but now I wonder if there is something do it.  Maybe I need to wait another 10 years for research to make the connection...

It’s so ironic that such widely used medications right under our noses may be potential treatments! I’ve always felt shooting random AED’s without actually understanding the underlying pathology is missing the mark and may do more harm than good - or at most only serve as a band-aid for a bigger problem. We need a med that works like a key to open a lock, something specific to this disorder rather than using a hammer to break open the lock which is why I prefer to live with the few seizures he has at night than add another AED or two. I worry these meds will irretrievably remodel his brain chemistry over time and do more harm in the long run. I wish clinical trials for trintellix can happen soon. I hate seeing so many drug commercials on tv but Trintellix is so familiar to me from the ads.  The study suggests Trillentix/Brillentix may be more specific than Remeron. If Remeron reduces seizures by 50%, I wonder what the percentage reduction will be with trillentix!

For 3 nights, we have had Luki on dopamine/serotonin supplements. I haven't started the 5 HTP, yet as I am trying one at a time.  The last two nights, his seizures have not reduced in frequency, but they seem to be milder.  While on most nights he thrashes about in bed with arms flapping and legs kicking; after the supplements, he no longer kicks his legs. On his first seizure at 1 am, he just jolted up and stared off as if in surprise.  Usually, he will thrash about.  This morning he had another one and we noticed that he did not kick his legs but just flapped his arms.  Coincidence?  We will wait and see.  The dopamine/serotonin supplement needs to be taken for 5 days then off for two days. I am a bit concerned that the data shows only 33.3% seizure reduction with serotonin itself versus over 55% reduction with Remeron. And how the heck does an eye drop dorzolamide reduce seizures by 50%? And meclizine, an anti-nausea medication reduces seizures by 43.8%??   Although Felbamate (50% reduction), works well for some individuals with Dup15, we have not had much luck with it. The results kind of seem to be everywhere and nowhere.  

I only give Luki half the recommended dose of the serotonin/ dopamine supplement and only at nighttime.  I break open the capsule and mix it with his yogurt. I will also present the data to his neurologist to see if he will be agreeable to prescribing Remeron.  Although, prescription medications have their side effects, too one being increased thoughts of suicidal ideations.  It baffles me how an antidepressant actually makes you want to kill yourself???  Also, starting and stopping SSRI's need to be done judiciously and titrated carefully.  If the supplements do their magic, maybe I don't need to get prescription drugs.  Let's wait and see what happens.  

*******

Day 4 update:

On day 3 I reduced his night time dose of lamictal to half and skipped his morning dose.  Bad idea.  He woke up crying for about 5 minutes.  It seemed like he was having pain (headache?).  He also had one of his usual "wake up" seizures.  Maybe taking away the lamictal was too soon? I will give him his morning dose and only half his night time dose and see what happens.  I am keeping him home today to monitor more closely.  So far so good.  He is back to his cheerful self and ate a very good breakfast.  

Day 5 update:  No morning seizures noted.

Day 6 update:  AM seizure with flapping and kicking. 

Day 7 update:  day 1 of 2 OFF day of supplement.  Wake up seizure noted.

Day 8 update: Day 2 of 2 OFF day of supplement.  Wake up seizure noted. 

Day 9 update:  Took supplement at night.  No morning seizure on day 10.  Giggling noted around 2 am. 

2022

As I bid farewell to 2022, I say adieu with some bittersweetness but also with some relief.  It has been an amazing year of travel adventure for the family as we stayed at a oceanfront airBNB at Oceanside for Gabriel's birthday and went on an amazing cruise to Alaska.  It has also been a busy year for Liam as he has graduated from mommy homeschool Abeka curriculum and started kindergarten at Heights Christian Elementary school.  He has also had quite a busy year of extracurricular activities since the pandemic lockdown has lifted.  He finished a dance class, went to summer camp at Heights, went to Lego Camp for a few days in the summer, swam throughout the whole summer and is now in level 2 and hopefully he can continue on this summer.  Through church, he participated in basketball clinic, golf class and soccer.  He even took 6 weeks of yoga for children through the community center.  He also is finishing up his beginner's piano class and had his first recital at a hall in Mt. Sac College. Liam enrolled in cooking classes as well as Chess master through his school and we made tons and tons of Christmas cookies for the holiday.   Lucas went kayaking and paddle boarding for the first time and did great!  He has always loved water. For Halloween, Liam went as an angel and Lucas as Spiderman.  Lucas is on this last year of elementary school before starting junior high next year.  We are lucky he found a really great 6th grade teacher who is working with him and showing me things I didn't think he could do but is mastering in the classroom such as matching letters and numbers!  His seizures are still at bay with 1-2 occurring almost every morning as he wakes up. 

 Liam had his first school Christmas concert where he fell so hard as he tried to get down the steps that the whole audience gasped with concern.  Luckily, he was not injured and said his line "An angel appeared to Joseph" like a pro. He dressed as a cowboy for a school cowboy themed day and I am sure everyone thought he was just adorable, I know I did.  We spent Christmas with Gabe's parents and visited the Cathedral of our Lady in downtown for mass and surprisingly bumped into the priest who married Gabe and I.  We learnt that he has been promoted to Monsignor and is serving at the cathedral.  Seeing him was such a beautiful coincidence and it was the best Christmas present Spirit could have given me.  For dinner, we did something unconventional and had dinner at Spire76, the top of one of the tallest builings in downtown Los Angeles.  The lights illuminating the city was more beautiful than Christmas light shows we've paid to see and found it awe inspiring to see the city change so much (for the better) over the 42 years since I've been here.  We then visited The Bloc where they had some beautiful lights and show for free and took some memorable family Christmas pictures! After Christmas, the family went to Las Vegas and stayed at Paris hotel for some good food and relaxation.  We had an extravagant dinner at Gordon Ramsay's steakhouse and visited Bellagio to view their beautiful Christmas decorations in the atrium.  In the new year, the family had dduk-guk and went for a walk at the Sequoia forest at Carbon Canyon Park then went to Mt. Baldy for the kids to play in the snow.  New Year in 2023, we spent a quiet day with Gabe's parents and I took all the ingredients for dduk guk and made it at their house.   Liam bowed "sebae" and received money from his grandparents, a tradition I am trying to teach him every year. 

Overall, it's been a great and memorable year.  The only downside has been the mess in the cryptocurrency world where my investments totally tanked compared to the previous year.  There has been scandals and the collapse of reputable (or so we thought) centralized exchanges such as FTX and Celsius and I've lost money with the collapse of a certain stablecoin. Although not directedly tied to FTX, some of my investments are locked for withdrawal through its contagion.  But, I am still hopeful there will be an upturn eventually but not necessarily in 2023.  I have hope and conviction that cryptocurrency is good for mankind and that it will help humanity to be on a level playing field to get ahead.