2018: Ahn Family Year in Review.

2018 Ahn family year in review on youtube...and that's a wrap!

Questions from Unbroken Faith by Diane Dokko Kim

Currently, I am reading and studying the book Unbroken Faith by Diane Dokko Kim. Buy book here. The back cover of the book states that "... Diane Dokko Kim comes alongside you as a fellow special-needs parent to help reconcile the premise of a good God with the devastating realities of raising a disabled child".  I am in the middle of the book but decided to write down all the questions at the end of each chapter to ponder and answer at a future date.  It would be nice to share the answers with other parents in a small group setting of a church  but currently, we are not attending church since our move last month.  I miss our old small group of special needs parents back in Rosemead.  We are still "church shopping" and I pray we will find belonging soon.

Sometimes, especially in the beginning of this journey, it is hard even to formulate the questions one needs to be asking.  These questions help to get the mind thinking and sort out feelings, clarify our attitude towards a diagnosis and discover where one stands with God.  Diane states that "suffering is a blaze that either purifies untested faith or melts it down and dissolves in completely". Hmm...I wonder where my faith will be in the end.


I'm not sure why I felt having an intellectually disabled child was the worst thing that could ever happen to my family when in hindsight, I recognize fates just as bad or worse.  There are families that have children living with cancer.  A mother once lamented to me that her son was extremely belligerent and oppositional defiant to anything she says.  There are parents whose hearts are broken in pieces because their child is in jail for murder, rape, theft, gang affiliations, drugs.  There are parents whose children are missing or murdered.  It's really unfair to say one suffers more.  It all hurts in different ways but pain is pain.  "The world breaks everyone and afterward some are strong at the broken places" (Ernest Hemingway) ...And some are just broken.  We all are presented with unique opportunities to find out who we are and where we stand with God.

It's easy to justify my suffering by saying I didn't sign up for this particular experience.  Why me? Why did this happen?  But maybe I did sign up for it and I just don't remember it.  Maybe it was all agreed upon with God, the angels and my spirit before I ever incarnated into this physical world.  Maybe it was agreed that this would be one of  my assignments here on Earth.  I've heard it said that the Earth is like a classroom with various grades and levels of difficulties.  Some souls are here learning at an elementary level while others are working on a level of a PhD.  The course I am on has been tough and full of pain and sorrow. That’s not to say that more suffering equals a higher level of understanding, maybe one is just suffering with nothing gained.  I wonder what my "grade" is...

Anyway, without further adieu, here are the questions.



Chapter 1: Good News, Great Fear. "Do not be afraid!"


1. What was your initial reaction-thoughts or feelings- to the news of your child's diagnosis? How did you respond?
2. what are your biggest fears or worries for your child's future and that of your family?
What is your "Bethlehem"? What are the next steps you can take to support your child and family while working on your faith?


Chapter 2: What more could I have done?


1.  In what significant or unique ways did you prepare for your child's arrival?
2. How have you had to adjust your expectations and plans for your child and family?
3. How is God shaping your character or challenging your ideals about parenting?


Chapter 3: Wrecked: From Hallowed to Hollowed "This Is Not the Way It's Supposed to Be!"


1. What were some initial indications of "Something's just not right" in your child's development?
2. What "should have been" do you grieve the loss of? What expectations, hopes, or dreams do you fear can no longer be?
3.What "new thing" might God be building for you?  What work of rebuilding and redemption is God working in you?


Chapter 4: Permission to Grieve. "Where do I go with my pain?"


1. In what ways are you processing your pain, anger or grief? Where or to whom have you turned? Are there healthier or more productive alternatives to foster emotional healing?
2.Have you given yourself permission to grieve? Have you told God honestly how you feel, or do you feel unable to turn to Him?
3.  Take a moment to list all your areas of grief and perceived loss, Speak authentically and honestly with God, knowing He understands and shares your pain. 


Chapter 5: Leaning In, Not Away.  Angry "with" God


1. What circumstances or settings trigger extreme reactions for you?
2. Are you angry at God or with Him? How would they look different for you?  In being angry with God, what might you think, feel, say, or do differently?
3. Who or what can help you safely work out your feelings of grief and being overwhelmed? Identify safe people or places where you can retreat.


Chapter 6: Writing Our Own Psalms. "Don't You care, God?"


1. Where do you go with your anger? Have you directed your feelings up? Or have you been leaking sideways? Where or to whom might your grief be unfairly spilling?
2. Which of the psalms resonates most with you? Which    verse might you claim as your own?
3. Write out your own book of psalm - real, raw, and unpolished.  What will you heave heavenward before the Lord?


Chapter 7: Our Personal Peniel.  "Broken" Child, Broken Parent.


1.  In what ways are you broken?  Over which wrenched expectations do you wrestle with God? Which blessings are you demanding to be restored?
2.  What is God working to wrest out of you, to create space for new blessings he wants to pour into you?  What greater work might He be trying to accomplish through your struggle?
3.  How is your faith, character, identity or purpose being challenged or transformed through your child?  What blessings or insights have you gleaned?


Chapter 8: Trapped by the Impossible.  "Did You lead us out here to die?"


1. Recall a past "Red Sea" experience - a personal storm or time of barrenness- where you felt trapped.  What did you find on the other side?  What past providences reassure you of God's future faithfulness?
2.  What pressing impossibilities do you face today?  What do you feel trapped by?  What merciful redirection might providence be leading you to?
3.  How is God working on your character, motivations, and faith through "impossible" situations to prepare you for greater things to come?


Chapter 9: Couldn't vs. Wouldn't.  "If only You Had Done Something!"

1.  What are your "if onlys" where you wish God would intervene?  When your desires don't appear to align with God's plan, what else might He be seeking to accomplish?
2.  Which is more difficult to accept, that God can heal or that He won't?
3. What higher purposes, unexpected blessings, or gifts are being revealed in your faith, character, family, and/or community through God's "noncompliance"?


Chapter 10: Good Gifts.  "Why won't You fix this? Don't You care?"

1. How do you define a "good" gift?  In contrast, how would God define a good gift?
2.  Reflect on a previous season of trials.  What unexpected "good gifts" or blessings came from them?
3.  What situations do you wish God would fix?  What is your perspective on discipleship through hardships?  How can we trust in God's goodness despite feelings and circumstances that tempt us to conclude otherwise?
4. How is God disciplining and maturing you through your present struggles? What "harvest of righteousness" is being born through them?  What good - "that which He loves" - is God accomplishing, by permitting that which He hates?

Chapter 11: Close to the Brokenhearted.  "Why Won't God Intervene?"

1. Reflect on a time when your child was struggling.  Did you intervene immediately or wait? Why? What wisdom or benefit was there to withholding immediate help?
2.  Who are the spiritual siblings you can lean on for backup?
3.  If He does not intervene immediately, what might He be up to instead?  What might God be developing in you in the meantime?


Chapter 12:  Lord, Pick Someone Else!  "Me?  A Special-Needs Parent?"

1.  In what ways do you feel "unqualified" for special-needs parenting?
2.  How is God stretching and shaping you to grow and overcome your shortcomings?  How is He qualifying you for the call?  What is one area where you can exercise stepping out in faith and obedience, despite feeling inadequate?
3.  In what ways has God already proven that He is greater and more than sufficient to cover your inadequacies?


Chapter 13: Unschooled and Ordinary Men.  "But I'm not qualified for This!"

1.  What do you fear most about parenting your child with special needs: Call out your fears and name them.
2.  Are you hiding out in fear or avoidance? How, where, and why?
3.  Do you perceive God's voice of comfort seeking you out?  In what practical ways can you respond?


Chapter 14: Our Liabilities Leveraged.  "I'm the wrong parent for this child!"

1.  In what unique "peculiar" ways has God hardwired you that bless and serve your child well?  What liabilities can God leverage into assets?
2.  What's the best surprise blessing your child has brought into your life?
3.  How is God using special-needs parenting to mold you in your faith, character, and relationships?


Chapter 15: Have to vs. Get to.  "But I don't want to be special"

1.  In what situations do you find yourself wishing, "Why can't we be like everybody else?"  What can help you cope with this sense of "otherness"?
2.  Do you view your child's disability as a dubious distinction, a divine designation, or both?
3. What unexpected blessings, experiences, or testimonies have emerged from "getting" to be a special-needs family?


Chapter 16: An IEP for Me.  "Why me? It's not fair!"

1.  In what areas are you tempted to compare your life with others?  What feels "unfair" to you right now?
2.  What are unique areas of weakness God might be working on?  What goal, skill, or behavior is God working into your spiritual IEP?
3.  In what ways is God speaking to you, "What about him/her/them?  You must follow Me. "


Chapter 17: The Fellowship of Otherness.  "No One Understands!"

1.  What unique challenges do you face that you wish others understood better?
2.  What can you do to fight feelings of isolation or loneliness.   Who or where is your safe place?
3.  In what unexpected ways has God shown that He sees you (El Roi God)? How has He demonstrated His ever-present care for you?
4.  Have you connected with other special-needs parents who "get" what you're going through? If not, what might be your next step to connect with others?


Chapter 18: Compassion: Suffering with.  "Sit with Me, for I Am overwhelmed"

1.  What well-intended cliches, unhelpful comments, or unintended slights have you endured?  What do you wish had been said or done instead?
2.  Who do you have to "sit and keep watch" with you?  To walk alongside, support, and pray for you?
3.  Why is it difficult to accept help-much less ask for it-even when we are legitimately overwhelmed?  How might God be challenging that resistance?
4.  What might be the next step in establishing a support network for you, emotionally and practically?  What's the next best thing you can do?
5.  What would be  your dream list for practical help?  Write down your secret wish list.  Prayerfully consider sharing the list with trusted friends or family who desire to help but my not know how.


Chapter 19: Jesus, Plus.  "It this it?  Or should we expect something else?

1.  What other "plus" benefits, in addition to salvation, did you expect?  What unspoken expectations do you now feel disability excludes you from?
2.  What other purposes or "places of healing" might God be working to deliver in your life?
3.  How might God be repurposing your "pluses" or idealized expectations to experience that which only He can deliver?  Where is God trying to redirect your attention-new blessings you may be unable to recognize-due to your insistence on the pluses?


Chapter 20:  When God won't behave.  "Never, Lord!"

1.  Are you committed to holiness over happiness?  Do you insist on how Jesus should save or deliver you, or surrender to His higher purposes?
2.  How is God repurposing your struggles to mold you into the image of Christ?  How does suffering aid the process of sanctification?
3.  What is an example of having every worldly comfort or luxury but lacking eternal peace and significance?  Conversely, recall a prior experience of personal hardship or suffering that was paradoxically marked by the joy and transcendent peace of Christ.

Chapter 21:  Life, Hijacked and Imprisoned.  "What has happened to me...?"

1.  What feels like "imprisonment" or limitations on your life today?  Grief, frustrations, or hijacked ambitions?  List them out and surrender them before the Lord.
2.  What greater work is God accomplishing through these "chains"?  What greater gifts might He be cultivating in the confines of your parenting.
3.  Who are the Praetorian guards - friends, family, and community- who stand watch from front-row seats to your life:  They bear witness to what God is doing in your family.  What difference do they see in your countenance?

Chapter 22:  Losing Our Way Along the Way.  "What do we do now?"

1.  Where are you in your walk with the Lord?  Are you actively seeing, stumbling, or stopped as a result of your child's diagnosis?
2.  How is Jesus drawing near and walking alongside you in ways you haven't recognized?  What prevents you from recognizing His presence with you?
3.  What questions, confusions, or doubts burn in your heart?  What truth or clarity is God breathing into your current chaos?


Chapter 23:  A Secure Surrender.  "I can never die"

1.  What hinders you from trusting that God has plans to "prosper" you and not to harm you, plans to give you hope and a future"? How can you respond to God's invitation to surrender worry about your child's future and experience His peace?  What would surrendering control and being at peace look like?
2.  How do you distinguish between your responsibility and God's sovereignty?  What are the parts only you can do versus what only God can do?
3.  What scriptures can you claim in faith for your child's future?

Chapter 24:  Crisis and culpability.  "Why was he born this way?"

1.  In what areas have you been suffering from guilt?  What regrets or fears have plagued you regarding your child's disability?  What does the Word of God say?
2.  What are the next steps you need to take for yourself, for your child, and for your family?  Focus on what you need to do now rather than on factors you cannot change.
3.  How is the redemptive work of God being displayed through your child's life?  How is the grace of God being displayed in yours?

Chapter 25: Believing, Despite "What is the work of God?"

1.  In what other areas can you experience miraculous healing?  In what areas can you exercise faith where it's hardest"  How might it look to choose hope over despair?
2.  How can you go about seeking spiritual food that does not spoil?  How can you curb your appetites to prioritize your soul, the spiritual over the physical and material?
3.  How is God redefining your definition of miracle or blessing.  Are there other significant miracles God has provided that you may have overlooked due to fixating on dramatic, physical healing?  What blessings are others experiencing through your child o family?  Take a moment to give thanks for these.


Chapter 26:  Dumb Questions.  "What do you want me to do for you?"

1.  What do you want Jesus to do for you?  Do you want to get well. not just your child to be healed?  Are you equally urgent for your own spiritual healing and strength?  God already knows what we seek.  But He delights to hear from us, however halting or awkward our prayers may be. 
2.  What awkward questions is Jesus asking you?  What deeper need or hidden disability of the heart is He probing and prompting you to address?
3.  How is prayer and conversation with God deepening your dependence on Him ?

Chapter 27: Low Expectations.  "what good could come from this?"

1. Name a past situation you dismissed as hopeless that God transformed into an unexpected blessing.  How has a death or loss ended up being life-giving instead?  List the ways God has used past pains to birth present blessings.  Let these remind you of His faithfulness over today and tomorrow.
2.  What expectations have you dismissed as hopeless?  What do you struggle to surrender?  Are there prayers you've given up on because you feel God is unresponsive, or because you've lost hope?
3.  What is God asking you to do today, despite your skepticism, despair, or resignation?  Is there an "envelope" you need to submit in faith? "What good could come from this?" Despite the pain of loss, what new thing might God be ushering in?

Chapter 28:  Kingdom currency.  "How can my child live a worthy life?"

1.  How does the "normal" world define success or markers of a valuable life?  In contrast, how does God's Word define blessing, success, or a life well lived?
2.  How have your values and perspectives been challenged or changed as a result of your child's disability?
3.  What is your greatest wish or prayer for your child's life, for your family, and for yourself?

Chapter 29:  Inconceivably More.  "How is this "blessed and Highly Favored"?

1.  Today, what "pierces your soul" with terror, hope, pain, and wonder?
2.  Identify a scripture to claim in advance, "to treasure and ponder" in your heart in the meantime.
3.  In what ways have you been surprisingly "blessed and highly favored: in your special-needs parenting journey?  How has God worked "for your good" (Romans 8:28), even now?

Summer of 2018.

Photo booth at Audrey and James Wedding

 

Lucas will be starting second grade in two days and I marvel at how my little baby has turned into a second grader already.  I've been looking back on all the Instagram pictures and videos (link) I posted since he was only a few months old and a sense of pride comes over me as I see how far he has come and is now a healthy seven year old boy. 

 He still smiles and giggles just as he had when he was one year old - that hasn't changed and when he is serious, he has the same gravity of expression as if the whole world rests upon his shoulders which I saw even as a one year old. It felt awkward that I would play peekaboo or silly games with him when he felt very much like an adult in a tiny little body and I worried that our lives would be somewhat boring - but boy is it not boring!! Never a dull moment in our household - not necessarily because of childish antics but because of Dup15q. Luki's personality is just so mild, calm, serene, mature, deep, serious yet giggly,too.  It's easy to overlook his signature personality, the uniqueness of his soul and presence when faced with a serious intellectual disability and it can be easy to dismiss his unique quirks as just a part of his disability, but I try to recognize what part of Luki is Luki and not Dup15q or the side effects of medications.  My cousin's son just got married last weekend and I remember having babysat all his siblings and his cousins, I recognize a little piece reflected back from within themselves which hasn't changed a bit since they were tiny infants. Is it the soul that stays for a lifetime and stays constant  even as the physical body transforms so many times through the various stages of development?  Some things never change.  

My little Liam is a bundle of joy and lightness compared  to Lucas.  That's just who he is. He giggles at the drop of a hat and plays peekaboo with me and even ventures to lift people's shirts to look for their belly buttons and once discovered proceed to show off his own belly.

 Liam attended a music class this summer where he learned the difference between a glockenspiel, xylophone and a metallophone  (not really, he is still clueless, but I sure learned alot!).  Lucas sat on his Convaid stroller munching on his cereal while watching Liam and I sing and dance in circles . One third of the cereal ended up on the floor as he still hasn't mastered the pincer grasp and since he still can't drink from an open cup and put the cup down after taking a sip, there was some spilt milk on the carpet floor.   So grateful Lucas never had meltdowns (thank goodness!) during class and he actually seemed to be enjoying just watching the little babies and their parents having a good time.  And many parents gave sympathetic glances over to Lucas and me and I felt grateful we were being accepted during the class.

Music class: playing the african drum

Dancing to La Bamba as Luki watches from the back

Dancing to La Bamba as Luki watches from the back

playing the metallophone

Lucas has breakfast while Liam attends music class.  Here's Liam snatching a few of Luki's cereal.

Liam is shy with strangers.

Today's music class is with pots and pans! 

Lucas has  had quite a seizure adventure this summer.  At the end of the school year, his seizures were getting worse by the day and the school nurse gave me a thick packet of seizure logs which I shared with the neurologist.  Things were looking so bad that we were even considering a VNS implant.   We tried two different medications -felbamate and  lamictal and stopped keppra altogether which I should have done a long time ago as it was really having no effect in stopping his seizures.  Felbamate seemed to make his seizures worse so after titrating it up for a week, we brought it back down in another.  We then started lamictal which seemed to be working well but then we noticed rashes all over his torso, arms, feet and hands.  I thought it was a side effect of the lamictal leading to Steven Johnson Syndrome but he actually developed hand mouth foot disease! No surprise there as he always takes his socks off at Party Kingdom and the PlayPlace at McDonald's - his two summer hangouts.  He spiked a fever of 103 for a day then it took about 2 weeks for the rashes to heal.  Gabriel caught this from Luki but was mistakenly told by his primary physician that he may have gout.  Only when he shared pictures of Luki's rashes with his brother who happens to be a physician were we aware of hand-foot-mouth disease. It's misdiagnosis like this that makes me suspicious and distrustful of medical doctors. Gabriel was so close to starting gout medications! Ugh, stuff like this really makes me mad. Who knows what treatments for Luki's seizures are also totally off the ball and inapropriate?!  We  stopped lamictal althogether but Lo and behold, his seizures have completely stopped!!  He is currently only on banzel but I have no idea what stopped his seizures. Was it the fever, can infections such as hand-mouth-foot disease stop seizures? Was it the felbamate or lamictal or the synergy of both? Was it the longer sleep in the mornings during summer vacation( he would sleep until 9-10 am). There was a period when Luki went for almost three months seizure free when I started high dose of DHA (see previous blog on subject blog) but then the seizures returned.  Will the seizure return again within a few months time?  I wish I knew what the triggers for onset are and why they mysteriously just disappear.  At times, it feels as if his brain needs to get the seizures out like having a big bowel movement and once all those haywire electrical discharges are out, it gets satisfied for a while, but only for a while.   He is not had one meltdown since his seizures have completely stopped.  I am not starting lamictal back up until he starts showing signs of seizures again. I am thankful but perplexed. 

It was a hot summer and Mondays were designated as mommy-and-me days with Lucas at Newport Beach while Liam attended daycare learning how to finger paint and use a fork to jab food. Liam makes so much progress at daycare that my mother in law thinks I should send him more often. His speech is still very delayed (he is still nonverbal) so the pediatrician and the occupational therapist at Kaiser recommended us to the Regional Center for Infant Stimulation and Speech Therapy sessions at home.  This all feels like dejavu and I immediately felt overwhelmed at the thought of having to juggle therapy sessions for both Lucas and Liam!  We may even have two therapists in our home at the same time working on each child.  I am praying for strength and stamina to do all of this.

This summer, I cancelled way too many ABA sessions so that we can go play in the kiddie pool in the backyard, go to the Playplace at McDonald's, swing at the park and jump on tampolines at Play Kingdom -- a giant indoor playground for kids going crazy on sugar and adrenaline.  Luki climbed up a giant ladder and came down a slide all by himself. 

Mondays are Mommy and Luki day at Newport Beach

 He also contracted foot mouth and hand disease there because he kept taking his socks off.  I've learned to use sports tape to keep his socks on from now on

Play Kingdom. Luki climbed up all by himself!

Hand-Mouth-Foot disease rash 

Sports tape!!

By the end of the summer, he seems not to have much interest in going to these places anymore.  Maybe he is over it already,  We never quite made it on a Disney cruise, but we went on a weekend getaway to Santa Barbara at my alma mater and stayed in one of the dorms converted to a "Summer's Inn" and had a great time hiking along the lagoon, exploring the campus and hanging out at Goleta beach and eating yummy foods. These are the many small moments among many that made up our summer of 2018 and they will stay with me forever.  I guess these little moments are what makes up life. 

Backyard fun in the kiddie pool!

Riding the Lil Toot at Santa Barbara 

Tae Tae is an honoray junior captain steering the wheel

Fun at UCSB, Summer Inn

Fun at Goleta Beach

Summer Inn

UCSB Lagoon

Mr Fussypants

Went to Ronald Reagan Presidential Library at Simi Valley on our way back home from Santa Barbara and look how happy Luki looks!

On the Lil Toot going to the harbor

Lunch at the Santa Barbara pier

The boys are wiped out from all the activities!

Splish splash at our new backyard

Swinging with mommy at the park.

A Fun Day at the Beach!

Lucas went to Newport Beach for the first time this summer and he had a wonderful time wading in the water and getting pushed by the oncoming waves.  He ran full speed into the water when the waves waned and I had to keep him on a harness to stop him from going in too far into the ocean.  He is getting too fast and too big for me to handle without reinforcement.  He did his happy dance and his signature laugh when he is immensely enjoying something.  After he got cold from playing in the water, he walked over to the hot sand to warm up and be in zen. He lay on his tummy and I enjoyed the contentment on his face. I think the warmth reminds him of the jacuzi which he loved so much and probably misses after we moved out of our townhouse.  Once he got too hot, he would walk back into the waves and back and forth again.  

It was a busy day at the beach and I was feeling self conscious of the fact that I had Lucas on a harness.  The "leash" attached to a shark shaped backpack is actually a dog leash which I bought at Petco.  Unlike regular toddler leash/backpack combos this is the only one that is strong and long enough to give him some freedom to roam without me right by his side and it is working well for us at places like the beach or the park.  I hate drawing attention to myself in large crowds and I wondered if people behind me were talking, staring and judging me.  At one point, a woman walked toward me and I was bracing myself for her to berate me on what a horrible parent I am to be having my son on a leash like a dog (this has actually happened to me at a park by another parent).  But instead, she shared her story about her 21 year old son who also has autism and is living independantly.  She said a few things about IEPs and vaccines but what stuck with me is when she told me not to care what other people say or think about the leash/harness situation.  It was such a comfort for someone to actually reassure me verbally, in real person, that what I was doing is OK and that I am not such a horrible parent.  I can get support in social media support groups when I need it but it was something else to have a real person next to me talk to me so kindly.  I felt confident for the rest of our stay at the beach and she was just what I needed at that moment.  She didn't have to come up to me and talk but she did and it made the world of difference. People right now seem so angry about everything and everyone that I hesitate to approach anyone! What a lesson it is for me to not be shy or afraid of approaching people, make small talk and give a few kind words of encouragement when I can.  

It is scorching hot in southern California!  Yesterday, Tae Tae went to visit the beach for the first time. What a difference between him and Lucas at the same age.  Tae Tae runs all over the beach and even made "friends": with a couple of teenagers!  He is not shy at all!  He ran to and away from waves giggling so carefree.  It was such a joy to see him play so well and I couldn't help but compare my experience with Lucas when he was of the same age.  Lucas was so floppy and wasn't walking although he enjoyed the texture of the sand between his fingers, he never smiled at other kids or laugh and babble like Liam.

It is hard to take both kids to the beach and I could never do it alone with out someone with me.  That night as I lay Lucas to sleep and I replayed our time at the beach over in my head, I changed the script  with Lucas without Dup15q.  I replaced my memory of chasing after Lucas and having him on a leash with him helping me set up the umbrella and laying out the chairs.  I saw him play with Liam as they walked hand in hand towards the water, both boys giggling with excitement as the waves crashed on shore. I heard Lucas tease his little brother and chase him around the sand.  I saw Lucas and his dad chatting and walking to the restaurant across the street to get lunch and he was helping his dad carry the food back to us.  I saw Lucas eating his corn dog all by himself and help feed Liam his baby food then build castles in the sand as Liam cooed and watched his older brother turn sand into a fort!

 Then I quietly cried myself to sleep.

An Old Broken Crockpot, An Old Wooden Spoon.

I have an old crock pot that has moved 3 times in the last 18 years with me. The timer is broken and there is only one temperature setting for all 4,6 and 8 hour settings.  It should have been tossed a long time ago but I just can't bear to part with it and I still use it occasionally even though the food sometimes comes out overcooked and I have to keep a vigilant eye on the food. It feels like an old friend and every time I bring it out I find myself spacing off to memories of meals shared with friends, coworkers and family of long ago.  I can still smell the delicious aroma in the house when a stew, roast or ribs marinated for hours on end and it's such a comforting feeling to go back to when I am feeling down. Not many friendships have lasted as long as my relationship with this crockpot. How sad is that? People come and go in our lives and they stay for a season for our soul's growth then depart and I am grateful for all the lessons I have learned from them and knowledge gained.  For some, I am grateful that their negative presence is no longer tormenting me but even so, my life is richer, my knowledge deeper and I am stronger because (in spite of?) them.

I also have an old beaten up wooden spoon I've used to stir countless sauces on the stovetop and every time I see it in the kitchen counter, I feel at home and happy and even feel loved! Is it sad to say that some of my lasting "relationships" are with inanimate objects and my cat of almost 15 years?  So many people have come and gone in my life including deaths, siblings who are estranged,  "friends" from school long lost.  In hindsight though, I don't think I really ever had very deep relationships with people and maybe it says a lot about my personality and my independent streak.  I've always felt so different from everyone around me and didn't feel as if I could trust them.  Maybe, I just have deep seated trust issues.  I've heard also on the news somewhere that it is almost impossible to make deep friendships after the age of 40.  It does feel a bit lonely at times and it seems harder to make friends as I get older and busier.  Also, I get so set in my ways and not as open as when I was younger. Who would also be able to understand and commiserate with me in my special life with Lucas? 

Ableism versus A Mother's Heart: The Head Knows but The Heart Still Weeps.

Last week I came across a viral video made by a mother of a child with autism where she pours out her heart in full honesty and shares her raw feelings about the things she will never do with her son. 


Below is a link to her video:




The Last Time We Believe This Is Going To Be Okay


 I believe most parents of special needs children have a similar mindset (if they are honest) and there is a grieving period that needs to be passed though. I believe in moving through the grief and not staying in it and also find healthy ways to do it because if I deny it or stay stuck in it, I could easily find destructive alternatives to "medicate the hurt" (drugs, alcohol, shopping addictions, rage, self harm, anxiety, depression, etc..) which would do nobody any good.   I mourn the child I thought I would have, bury it and then accept the child that was given to me and I try to find ways to highlight attributes of  beauty and strength within Lucas and in our unique situation.

Another parent with a special needs child blogged in response to Finding Cooper's Voice's video by criticizing her approach to her son's autism citing that her reaction is a very detrimental form of "ableism" and such videos that seem to be helping is actually doing more harm than good to the disability community.

Here is her blog link below:

Why that response video to the “Last Time” is ableist and encourages ableism.

I get it. I see where the author of the blog, Lisa Lightner, is coming from.  I had an alcoholic father who took sole custody of my two older brothers and I and he was totally incapable of taking care of us, let alone himself.  I remember my aunt would come by often to cook for us, do laundry and whatever she could to help us out and although I appreciated all her efforts, she also lamented about how sad our situation was and how pitiful us children were and she worried about us and on and on, etc..etc.. What was worse was she would say these things in front of other people in our presence and we hated her for blabblering on and airing all our dirty family laundry to people and it made me feel humiliated and ashamed.  I appreciated her help but I wished she would just shut her mouth.  I know it came from a good place of love and concern but it was annoying and did little to help us feel better about our situation and ourselves. 

In a way, I guess this is how people with disabilities see ableism.  Who needs to be told how their lives are so pathetic, sad and hopeless?  Yes, it is a hard life but most people have issues and people with disabilities just have a unique set of issues and different challenges than most. Their souls came to experience a unique form of being (for whatever reason), and it is important that positive attributes be highlighted instead of people focusing on the doom and gloom.  Likewise, parents of special needs children also came to experience this interesting life with its unique challenges and joys.  I am not sure exactly why we would chose to do so but believing that it was our soul's desire empowers me and doesn't make me feel like a victim of a circumstance. As a parent with a special kid, I know this but what the head knows, the heart still weeps.  I know all this about my disabled son and I remind myself never to say and do as my aunt.  I don't want to see him as a pitiable human being because he is not.  I want to focus on his potentials and highlight his strengths even on those days when it may be difficult to do so.  But, even though my head knows this, I still find myself crying whenever I am left alone to think about his condition. My heart always grows tender when it comes to my children.

I am eagerly anticipating the release of a book called Unshattered Faith by Diane Kim. The arc of the book juxtaposes the journey she takes with her son with autism against the 5 stages of grief as outlined by Elizabeth Kubler-Ross Click here for the 5 stages of grief. Diane Kim is an evangelical Christian who has a son with autism and in her book shares her struggles of accepting her son's diagnosis as well as grappling with the question of how a loving God she serves (she was a missionary) could do this to her family.

Here is a link to Diane Kim's book on Amazon:
Unbroken Faith: Spiritual Recovery for the Special Needs Parent

 I still mourn and weep and as  Diane Kim says, "grief is like a ghost that keeps coming back".

Today, while Luki was at school and Tae Tae was at daycare and as I sat alone at home with a cup of tea, I couldn't stop weeping.  In the presence of people I am fine but every time I find myself alone for any period of time, be it at home alone or out in public like at a coffee shop, tears just roll down my eyes and I feel this incredible sadness.  I carry my sunglasses wherever I go now.  I don't know where it comes from because I thought I already came to terms with the whole disability/ autism/dup15q/epilepsy stuff.  Yet, I am glad and relieved to know that I can cry and I don't have to bottle my feelings up and hide them, deny them or pretend it is wrong to mourn and weep.  I am trying to be gentle with myself and allow myself to move through my feelings and I actually do end up feeling much better after a good cry.  I don't think I am where Lisa Lightner is and I wonder if I ever will be but truthfully, I don't want to be where she is.  It feels harsh and not very compassionate.  The caregivers also have a unique and challenging journey that parallels the journey of the disabled yet it is different and separate.  This is an intimate journey between the caregiver and the cared for.  Our paths are intertwined and we are both  entitled to our own stories without there being a conflict. Both our stories need to be heard and respected, without judgment because there really is no good and bad - it's all just there and it all just is.  Is there really a right and wrong way to grieve?

Perhaps, an agreement was made in heaven between myself and Luki that we would experience this unique life together when we got here on Earth - for whatever reason.

A conversation may have taken place there which could have gone something like this:

Lucas:  Let's go down to Earth and live a life where I will play the role of an intellectually disabled son and you can play the role of my mother.

Me: Sounds like an adventure! Now, let's pick a syndrome. There are so many.. How about this here called Dup15q Syndrome?  It includes autism, seizures, hypotonia, speech delays. Let's throw in incontinence and maybe you can just be nonverbal for added challenge!

Lucas: Ok, that sounds interesting.  This is going to be  intense for both of us!  Are you sure you want to experience all this?

Me:   Yes, so that ______(I can't fill in the blank as I write this blog because I have no idea why we would have agreed to it, although I am hopeful that with time the answer will reveal itself and it will all have been for good) We'll experience everything this situation entails and when we get back to heaven someday, we will compare notes on what we learned about ourselves, the world and God.

And so with God's blessing, our wish was granted. And down we came.

but I digress...

After a good cry, I watched the opening ceremony of the 2018 Winter Paralympics held at Pyeongchang.  I wonder why TV networks don't air the Paralympics but had such wide coverage of the 2018 Olympics? Not enough of an audience?  It was an amazing opening ceremony and it lifted my spirits.  Special Olympics is definitely the opposite of ableism and I wish people with disabilities can always be celebrated as they are at the paralympics. Ah well,  a shift in consciousness takes time but seeing how South Korean society which viewed disabled people with disdain is now hosting the Paralympics, I know change is coming to the world. 


Enjoy the opening ceremony below:

Lynn Ferguson, Iceland

https://www.youtube.com/watch?v=GnLtj19kzFk