Not for the Faint of Heart. Seizure Log November 7, 2020

 Lucas' seizures have recently made a comeback with a vengeance.  On the 7th, he had a cluster of 15 seizures in a span of two hours with vomiting three times in between.  We held his morning dose of lamictal 25 mg and are not sure if this is the cause of his cluster seizures.  Recent blood lamictal level came back at therapeutic range  but it is in the low end so we have room to increase dosing (he is at 2.7 and therapeutic range is 2.5-15).  I hate the prospect of having to give him more meds so we are going to see if getting his lamictal on schedule will help stop the cluster seizures.  

I worked a full 12 hour night shift and slept for about 4 hours and came downstairs to find Lucas starting his seizures immediately. We had declared a nursing colleague's dad dead from COVID and I was already emotionally drained.  Of course, management asked if we could stay 4 hours overtime.  The nursing staff are strained right now with COVID hospitalizations skyrocketing.  Every week I go back to work, another unit seems to have converted into the COVID unit.   I was tired, hungry, groggy and not in the mood to do more of nursing which I had been doing all night with COVID patients in the step down unit.  But there I was, an emotional mess as I tried to capture every seizure on video for the neurologist.  

After viewing the video, Lucas' neurologist said these seizures were frontal lobe seizures.  According to Lucas EEG from a few years back, it showed right frontal and left central/temporal sharp waves indicative of complex parital seizures.  He described these seizures as frontal lobe complex partials.   The frontal lobe is responsible for cognition and higher thinking. temporal lobe for memory and speech.  This explains why he is nonverbal and has cognitive delays.  But really, I think the whole brain may be affected.  

For now, we will stay put with no med increase and continue to monitor.  

One year report for Lucas Agn Date created: December 09, 2020   Start Month: January 2020 End Month: December 2020 Weight: 44 lbs. (as of November 22, 2020) Birth date: May 19, 2011 Current Medications: Banzel 10.00 mL Daily Banzel 10.00 mL Daily Lamictal 25.00 mg Daily January, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 February, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 March, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 April, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 May, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 June, 2020 Week 1 1 Week 2 3 Week 3 0 Week 4 4 Total: 8 July, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 0 Total: 0 August, 2020 Week 1 0 Week 2 0 Week 3 0 Week 4 1 Total: 1 September, 2020 Week 1 8 Week 2 7 Week 3 4 Week 4 2 Total: 21 October, 2020 Week 1 2 Week 2 7 Week 3 4 Week 4 6 Total: 19 November, 2020 Week 1 5 Week 2 5 Week 3 11 Week 4 0 Total: 21 December, 2020 Week 1 14 Week 2 1 Week 3 0 Week 4 0 Total: 15   Total events in report period = 85

LifeSong Womens' Favorite Thing Exchange Devotional Speech

 

LifeSong Devotional Dec 6 2020

 

Thank you so much for being here today to share a time of fellowship and for hearing my devotional story. 

Today, I’d like to share a little bit about how God and His Word has sustained and inspired me in  my role  as a frontline nurse directly caring for COVID patients and also in my journey as a mother to a wonderful nine year old boy who has special needs.  But first, I’d like to thank  Brenda and Kimi for inviting me to speak today.. Special thanks to Brenda and all the aunties in the children's ministry for making efforts to accommodate Lucas who has developmental delays and autism .  

 About 3 years ago, my family which includes two boys Lucas, 9 and Liam, 4 and my husband, Gabriel, moved out to Chino Hills from Rosemead where we attended Evergreen Baptist Church of San Gabriel and we were searching for belonging in a church family and in our "church shopping", we found Lifesong and felt a quaintness and warmth that lead us to hang around longer.   Unfortunately, due to COVID happening, we’ve had to keep our social distancing 

By trade, I am a registered nurse working on the “floor” , as they say, in direct patient care.  Recently, when COVID erupted, I have seen much suffering of patients who have been hospitalized due to the severity of their symptoms.  These patients are isolated alone for weeks in negative pressure rooms  with no contact with anyone except their nurses and doctors dressed in full isolation gear: masks, face shields, gowns.  We’ve also been witness to less fortunate patients who have succumbed to the symptoms and had to die alone from complications of their infections. I often think about the young man with dependent children at home to support, the mother of a newborn who is now left an orphan, the young 29 year old woman coding in the ICU then passing away a few hours later, the elderly who die alone.  I won't forget the faces of patients who, full of hope transferred to the intensive care unit to get ventilated, and feeling a heaviness in my heart knowing that that is the last time I will see them alive. At my hospital, there is still a refrigerated truck serving  as an overflow to the hospital morgue. In the face of   death, I've witnessed emotions from bravery to terror and anxiety and it has impressed upon me the fragility of life and how miraculous health and wellbeing truly are and yet, how so many take it for granted.  

I, along with my nursing colleagues, doctors, therapists and custodians, also have been frightened of contracting COVID when hospitals were short on personal protective equipment. Every day at work was, and is, like Russian Roulette, will I catch it today? tomorrow?  Is my mask tight enough? Is what I am wearing enough to protect me? But when leadership and supplies were shortcoming, I witnessed the kindness and generosity from colleagues and community members as they diligently hand-sowed masks, made hair coverings or made makeshift face shields for "heroes" who work in the hospital fighting a menacing viral enemy. The wonderful Mr. Rogers once reminisced that in an event of a disaster, his mother advised him to "always look for the helpers". I've witnessed the best of humanity as businesses, church groups, individuals  rally around frontline workers offering donated food, discounts and encouraging words of support.  And all these efforts were not lost on me and they have helped so many of us  pull courage and strength so we can keep going. 

Going back a year ago to Pre-Covid times, who could have foreseen our world today of  social distancing, constant hand washing, sanitizing, masking up and the loss of  livelihood for so many people as we live on the brink of an economic unknown?  COVID has revealed to our collective conscious, not just how miraculous our health is, but also the fragility  of our political beliefs and our economic systems, and for some, a crisis of spirituality. It feels as if the whole world has been shook and turned upside down.   Hopefully, the current world situation is to usher in a better future and systems to better manage pandemics in the future.  As far back as biblical times, there have been plagues and famines and other destructions chronicled in the Bible and great stories of faith, courage, hope and resilience have arisen from them.  In fact, God seems to use these afflictions to cull out from within humanity , the best it can be.  The Bible and the promises kept within have been especially  encouraging in times like this – when things aren’t always so rosy, when life throws curveballs and when it feels as if someone has pulled the bottom from under our feet. The bible is a living breathing book that has spoken  to me in a myriad of ways and a meaning of a passage carries different effects on me in various predicaments I find myself in throughout my life journey.  

 

This has  been especially true when I learned of my first born son’s genetic condition called Dup15q Syndrome 8 years ago.  Lucas has a chromosomal abnormality which predisposes him to severe seizures, renders him nonverbal and is completely dependent on the care of others for his daily needs including feeding and continence care.  He knows no knowledge of danger around him and is completely reliant on the patience, kindness and love of those who look after him.  Can you imagine an existence where you can’t talk to anyone, can’t control your own bowel movements, have no idea where you are or tell your loved ones you love them?  I can’t imagine the kind of courage and strength it takes for someone to live in such a state and I wonder even as our world considers intellectually disabled people like Lucas as “less than” that God has chosen souls of great strength and courage for such an assignment to come to this Earth as teachers of love, understanding and compassion.  And as his mother, I am humbled and  at times brought to my knees and still wonder why God has picked out someone unworthy as myself for such as assignment. I’ve been told by many well-intentioned people that God gives disabled children to special people.  Being a mother to such a special soul  and knowing I am not special in any way to be chosen  for such a role, I’ve learned that special children are given to any person who then have a choice to become special because of them, not the other way around.     At times, I feel people like Lucas are here as a test from God to reveal who we are inside and who we can all become.  I haven’t always felt like this and at first receiving the genetic report, I fretted and feared about the future and asked God why  this has happened to us.  Afterall,   I am a good person !, I honored God, I studied, I volunteered,  Why me, Why us, why MY son?  During pregnancy, I didn't smoke, use drugs or drink alcohol.  I didn't even drink coffee and yet I see so many who've done much more than I be blessed with children with no major issues.   This experience has broadened and matured my understanding of God's ways and I've learned that doing good doesn't exempt me or anybody from suffering, that not all things are under my control  no matter how good I try to be and that life happens to just about everyone. .

  Matthew 5:45 says the Father which is in heaven....maketh. his sun to rise on the evil and on the good, and sendeth rain on the just and on the unjust. 

  This isn't because God is unfair, but because He has a special and unique purpose for each one of His children

The front entrance of our home is a revolving door of therapists, nurses, respite workers, assessors, and  being in the care of others makes me feel very vulnerable and that still scares me.  Our initial approach before Lucas’ diagnosis was that our family would be a self sufficient unit, it was us against the world, we would take care of our own and each other.  Post diagnosis, we have had to be reliant on the kindness, patience and understanding of so many others, many of whom are strangers, to carry our family forward on a day to day basis. The lesson as a mother I have had to learn is to give up control,  give others a chance to show their compassion and humanity and set aside my pride and humbly remain graceful in the position of receiving. There are times God calls us to serve/give and then there are times He calls us to gracefully receive and stay humble.  

Ecclesiates 3 states:

There is a time for everything,
    and a season for every activity under the heavens:

 a time to be born and a time to die,
 a time to plant and a time to uproot,

And I would add to this list, if I could be so bold to do so, a time to give and a time to receive.  

Receiving my son's diagnosis has meant death of a sort, a death of a dream for my son and I've had to  envision a new one.  From dreaming of an ivy league education, my goals for him are that of self feeding, dressing and continence. 

 Perusing through scripture for inspiration on a new dream for Lucas, I came across

John 9:2 His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus replied: Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me.

Those Words from the Son of God have been a healing balm to this mother’s broken heart. My son has a grand purpose!  Through his affliction, he is here to make known the Glory of God!  Halleluja! 

I've also learned that everybody's brokenness is so that the glory of God would be made known.  It is hard to swallow such a statement when one is going through a season of difficulties but I remind myself that I need to always choose God, choose goodness because the world offers so many false alternative fixes and temporary bandages to heal a wound. There are so many aren’t there? Addictions, hatred, anger, self and other directed destruction.  And to be honest, I still fet, get scared and worry at times especially when Lucas has scary seizures.  Everyday, I practice being  grateful for what I do have, always knowing God loves me and pray earnestly for what I want to change or manifest.    I hope you, too, will never forgot that God is love, He loves you no matter what and through prayer and meditation on Scripture, you have the power to receive good counsel and change your life for good. 

 There are over a million families with a member who has autism in this country. There are 1 in 10,000 families who live with someone with Dup15q Syndrome, just like my family. After all these years of my journey with God on this Earth I can’t say I know why there is so much suffering and afflictions in this Earth nor why God chooses disease, plague, disability and hardships to draw us closer to Him. God has created a world of duality of good and evil, dark and light whose polarities are needed to define each other; afterall, how can we define good without evil? light without darkness? 

Going through my own afflictions similar to other parents whose children suffer a similar fate, has softened my heart to the suffering of others because I can feel their pain more acutely and intimately because I know first-hand what that feels like. Our understanding of our unique situations allow us to be a source of healing and knowledge to other parents out there who are suffering through a diagnosis. God knows, I've benefited and healed so much from precious experience and wise counsel of other parents who walk the same path. Does God give afflictions so that we can be a balm to others?  In my world, the answer is a definite yes. 

In the world of special education, there is an almost sacred document called the IEP - Individualized Education Plan which specifies all educational, therapeutic and care needs of a child during school hours. It maps out  goals a child is expected to meet and if the goals are met (or not), a new IEP is crafted to the child so that we can bring out their maximal potentials.  According to Diane Kim, a mother of a  boy with autism and a special needs ministry leader, God provides a  spiritual IEP for the parent to also learn, grow, and  meet spiritual milestones such as unconditional love, patience, acceptance, advocacy and much more. God is right there with me in this journey and is tailoring a unique IEP for myself as the mom, too. And what a reassuring thing that is to know! He has His eye on me, too. 

  I still have no definitive answers as to why my son was chosen for intellectual disability and maybe I’m not supposed to know it all. God has his reasons, He gives and takes away.  Blessed be the name of the Lord.  The only thing I can say with conviction and the only Truth I’ve learned so far is that God loves us. God's love has been my strength when my knees buckled in fear.  God loves my son with his disability, God loves a mother and father’s aching heart. God is Love and  God loves everyone, the sick, the sinful, the disabled, the hurting and broken, the blessed.  

Someone once said you must consider everything as a miracle or nothing at all.  Yet. So many of us take for granted the amazing gifts God has blessed our lives with.  In this season of Advent, I hope you realize how miraculous it is that you can walk and talk and have control over your body functions. That is truly a miracle and a great gift from the Maker.  And, if you are blessed to me a mother, know what an incredible  gift you have been given when you hear your child say the words “I love  you, mommy.” 

So with that, May God's love carry you through this time of fear, anxiety and the unknown.  

 Thank you.

 J

After 10 Year, We Still Do!

Us with our wedding photo

In the blink of an eye, 10 years of wedded bliss has passed by.  I am so grateful to God for bringing Gabriel into my life  His kindness, generosity, patience and understanding helps to bring out the best in me and inspires me to be a better person.  Together, we've gone through so much in the past ten years; our ups and downs, our great victories and life's curveball challenges thrown our way.  When my knees buckled in fear and shock, Gabriel was always there as a support to lean on. And, hopefully he feels the same towards me :) !  I am so proud of our achievement together! Here's  to another decade of growth, learning and happiness.  

 

Why Did You Choose Your Unique Suffering in This Life?

A few weeks ago, Supreme Court Justice Ruth Bader Ginsberg passed away after battling cancer for many years. As a beloved public figure for many Americans, she was a champion of womens' rights whose accomplishments, among many, included enacting into law the right for a woman to sign a mortgage without a man, the right to have a bank account without a male cosigner, the right to have a job without being discriminated based on gender and the right for a woman to work while pregnant and/or have kids. She was also the Supreme Court justice who wrote the majority opinion in the Olmstead case, declaring that people with disabilities have the right to live in their own communities rather than in institutions. I have never had much interest in the lives of supreme court justices nor legal matters very much but after having watched a movie based on her life called, On the Basis of Sex. I have a greater appreciation for her courage, compassion, tenacity and intellect and  feel grateful that she was one of the chosen nine to sit in the highest court of the land for so many years and feel fortunate to have occupied this earthly space with her in it. The movie portrays a young law student who is patronized by the administrators of Yale Law School as she endures double standards where preferential treatment was given to male students over her. And, as a young graduate of a prestigious Ivy League law school, she was unable to land her dream job as a litigator, had to settle for a teaching position and had to watch the rise of her husband's legal career, which she, too, wanted all the while playing the role of a supportive wife. Despite all the injustices she suffered throughout her life, RBG states that she was grateful for when, where, and  under the  unjust conditions she was born into because it gave her an opportunity to make needed changes and alter people's lives for the better, which in turn elevated her own status. Had she been born in a time when rights to women were already available, she might as well have just retired as a partner of a law firm and not have had the opportunities to make groundbreaking legal changes which set her life path as a supreme court justice. I wonder if she came to this realization while she was going through her suffering or achieved this understanding in later years when hindsight is 20/20.

 When we are going through the thick of our darkest hours, it is hard to see meaning and purpose for our suffering but when the clouds lift, hopefully we can see why things had to play out as they did. Among some metaphysical circles, there is a belief that everyone came into the world with suffering of their own choosing and that a pact with God was made before our physical incarnation on how our lives will play out and what hiccups we will experience. I like to entertain this perspective because it doesn't make someone to feel a perpetual victim of life's fickle circumstances but gives meaning and empowerment and leaves room for making choices and to exercise free will.  Although tangible physical changes may not always be possible, a shift in thought can lead to greater peace and assurance of situations as thoughts are real things, too. Her death triggered within me to ponder the question of why I chose the specific suffering that has been tailored to my own life. What conversation was had in heaven with God and my angels on what would need to be transformed, healed and brought to light through my own unique suffering in this life? 

 RBG passed away on Rosh Hashanah and in the Jewish faith it is believed that a soul who passes on Rosh Hashanah is a tzaddik, a person of great righteousness and justice proving God makes no mistake, His divine timing is always right and there is a reason for all of life's suffering.

So, This is 47. ""Everything Before 40 is Research, You Only Start Living at 40 On" - C. Jung

One good thing that came out of 2020 is our family picture!

 For my 47th birthday, my little family and I had a beautiful sunset picnic at the beach.

  As Tae and I waded by the water, a very rude man walked over and said to me, "hey mom, did you know your child is playing in front of a severed fish head?"   I didn't hear the fish part and frantically ordered Tae to get out of the water.  Sensing the distress in my voice, the man advised me to teach Tae the circle of life and about life and death.  I told him no, he is only three.  We already killed a beta and two goldfish at home whose carcasses I secretly buried in the back garden.  He seemed irritated with me and suggested I  tell him the truth "for once in my life" .. I have never met this man in my life.  I realized two things at that moment.  First, I felt a surge of gratitude on how absolutely lucky I am to have Gabriel in my life for 10 years now and that I didn't marry an asshole like this guy in front of me.  Gabriel is the one for me and although we have had our moments of mutual irritations, we are adequately amicable to get along well enough.  Doesn't sound too terribly romantic, but I'll take kindness, generosity and patience over romance any day.

The second realization was that on my 47th birthday, I found a huge severed fish head which literally floated right in front of me from the great vast Pacific ocean.  I saw this as a scary omen at first but discovered that Jewish and Chinese traditions view fish heads as great symbols of fertility and fruition of dreams and ambitions. Gabriel and I have consulted a fertility doctor after almost a year of trying to conceive and I had 14 vials of blood drawn the previous day as well as iodine contrast injected into my uterus and fallopian tubes to make sure everything is still working as it should. Gabriel is due for a sperm count next week.  Could this fish head be a sign that we will have another baby this year?  

So why have another baby at 47?  I never ever planned on having a baby past 40 but then again I never planned on having a special needs child who requires care for the rest of his life.  I always experience pangs of guilt and concern when I think of Tae as an adult with no sibling to consult and lean on. This burden I must leave to Tae and I would like the responsibility shared among other siblings.  He needs to have his own life, too.  Of course, there is no guarentee on how the future will unfold but it is my hope, wish and prayer that the siblings will get along and Luki will be well looked after. Lucas does not make for a good companion but is someone who needs to be cared for.  I feel a responsibility to do my part which is to have another baby and I leave the rest up to God and the choices my children will make in the future.  With good parenting and coaching, hopefully in the end, everyone will be happy and loved. With God's permission, I pray for a healthy baby and a pregnancy free of complications.  

Cleaned myself up!  

Thank you Tae for helping to make a birthday cake for mommy!

Dinner at Five Crowns, Corona Del Mar

Ahn Family Adventure Series: Summer 2020