Tag Archive | Scripture

Be Careful What You Ask For!

Someone at another site asked me how I was doing…here’s what I shared:

“I’m sorry you are carrying such a heavy load.

I’m relatively OK.  I’m seemingly “stuck” in some type of quasi-PTSD hopelessness loop over not being able to get any positive traction on my son Josiah’s Special Education case.  I’m still furious about how they broke the law with impunity & how the legal protections for the vulnerable are twisted into butt-coverage for the bureaucrats…it makes one feel so helpless/hopeless.  I did Major work for like a year & a half on Josiah’s Special Education case & when we finally talked with an attorney (after some funding from a family member made such a conversation possible) he basically said “there’s nothing you can do for your son…but I’d really like you to go ahead & be an advocate for other kids”.

I’m not fully ready to concede defeat but am still so burdened by the pain & frustration of it all that it is Very Hard to move forward mentally or emotionally.

My husband wants me to speak with a Counselor but I am skeptical that there is really anyone out there (besides God) who can grasp the magnitude of what we’ve faced historically with our son, it’s ramifications in our lives & for me personally, & I can’t even muster the energy to attempt to contemplate having such (allegedly) therapeutic conversations.

I’m not (obviously) actually very good at “letting things go” & really need the Serenity Prayer conceptually to help with this process.  I hate to “give up” but I also hate to see the “system” escape unscathed & have Zero Accountability.  It’s also still too bitter & unapproachable to try to advocate for other people’s kids (even if I could muster the energy or find the appropriate avenue to do so) when there is still so much that needs attention in my own son’s life.

These are like those “first world problems” that lefties mock people for.  Not the basics of food, clothing, or shelter but more the apex of that Maslow’s Hierarchy of Needs Pyramids proverbial “Self-Actualization” BS arena, I think.

Sometimes I think I’m just too scarred from all the battles to even begin to know how to live in “regular” society.  I’m in pseudo-hibernation/cocooning in hope that (eventually) winter will end (my fat stores will melt off!) & I’ll emerge a beautiful butterfly with sufficient energy to pump those superfluous abdominal fluids into those nascent but hopefully beautifully majestic wings & somehow manage to soar above before my brief sojourn planet-side is over!

OK, so it’s very late & I’m expressing my self in verbose flights of fancy…Thanks for asking how I am…I hope you don’t mind my ridiculous reply!

If I may quote you here “I am an emotional basketcase and the pain is brutal and that’s the upside of my grief right now.”  I really do relate…”

Our conversation can be found here:

Prayer Requests – 9

Image result for butterfly scripture

from a Bing.com image search for “butterfly scripture”

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Josiah’s First Post

My Special son, Josiah, is starting his own blog here on Word Press. Please stop by and give him your support & encouragement…Thanks, V

Josiah: Servant of Christ Jesus

Hello. My Name is Josiah Curren. I’m a 21 year old man With High Functioning Autism. I am a strong believer in Jesus Christ Who is The Author of Truth. I’ve had 17 Surgeries throughout my life. One The Surgeries I had was a Liver Transplant. I Graduated From Allen Park High School in 2015. Go Jags.

My Favorite Teams are Michigan and The Detroit Pistons . I’ve had all my surgeries at the University of Michigan Hospital. My favorite Bible verse is Psalm 23:4. I’m also A big fan of Three Stooges. They were a Comedy in the 1920’s 30’s and some of the 1940’s.

That’s all I can Say About myself. At least for now.

from google.com image search for Psalm 23

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Commenting on a Transplant Tale

I’m still coming to grips with a sea of emotions in relation to my son’s Liver Transplant (among many other medical, educational, and interpersonal issues surrounding his life and my intense involvement in caring for his myriad needs) so it is always with a bit of trepidation that I approach other’s stories about the Transplant Journey.  This arena represents a potential emotional hand grenade for me personally & it’s never certain what might cause the pin’s removal leading to potentially devastating internal destruction.

The article below was impacting enough that I just felt compelled to write a comment afterwards, which I wanted to document here and share with my readers and also give myself a known repository of this particular topic in case I want to return to this article again…like for inspiration to gear up for when we finally contact the “Gift of Life” organ registry to attempt a contact with the donor family to express our deepest gratitude.

Such a contact has thus far remained beyond my personal ability to approach except in the most theoretical terms.  It’s hard to know where to begin in expressing the deep gratitude for the life-giving sacrificial gift this other family has provided.  We spent so much time while waiting for the Transplant in prayer for the family and the donor, asking that the Lord would be involved in all their lives, that they would each have a saving knowledge of Him, that there would be such wonderful memories made and no regrets for things left unsaid or undone with the donor.  Contemplating the eventual loss of such a loved one was almost more than I could bear.  What do you say when the Liver Transplant doctor says that your son’s “ideal candidate would be a 12 year old gun shot victim”.  I was more overwhelmed by  the other family’s impending loss than I was by our own upheaval as we awaited this amazing and generous Gift of Life.

Complicating such contemplations is the nature of my son’s complex medical status.  Some staff on the Transplant Team mentioned that in some locales they wouldn’t even offer a transplant to someone as complex as my son (the implication being that his autism or other atypicalities, not necessarily medical in nature, may have lead to a form of disability discrimination against him).  How will this other family feel when they discover that their child’s Liver Recipient is disabled in myriad ways?  What if God has yet to have answered some of the prayers noted above and this family is in a spiritual desert and cannot grasp the value of my son’s life because of his disabilities?  What if learning about who has received their child’s liver they are even more devastated by who/what he is and this adds immeasurably to their grief, pain, and loss?  Should I spearhead the effort to contact them and generate conversations periodically within our family, or at Liver Transplant Clinic Visits (we have another bi-annual one next week), to help prepare us, or should I wait for God to so move on my son, husband, or other family members?  Should I be the one to make the contact or should my son (who has various communication challenges but is incredibly gifted in spiritual insight and compassion) attempt this solo?

Just writing some of these lingering questions down reminds me that this is a process that needs to be bathed in prayer.  I need to reach some place of peace and serenity so that regardless of the donor family’s experience/reception we will feel “persuaded” in our ultimate approach in contacting them.

Any of you reading this that know the Lord please lift us up in prayer as we continue to process and prepare to eventually make contact via Gift of Life and express our Thanksgiving for this family’s Gift of Life to our son!  We don’t want to be among the 9 lepers who didn’t return to thank the Lord for the healing…

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image from bing.com image search

Image result for luke 17:11-19

image from bing.com image search

image from bing.com image search original from blogspot.com

Please consider reading the original story of this group of Transplant Recipients meeting the mother of the Gift of Life donor…what testimonies!

Here is the link to the original article:

https://gma.yahoo.com/face-transplant-organ-recipients-meet-donors-mother-first-181313919.html

Face Transplant and Organ Recipients Meet Donor’s Mother for the First Time (ABC News)

Here are my comments left at the above article’s website:

This story is profoundly moving to me as the mother of a liver transplant recipient. My son was a teenager while going through the transplant process and as a strong Christian was prepared to possibly die if the surgery was unsuccessful. (Before his transplant operation he wanted to tell the surgical team “If I die during the surgery don’t be sad because I’m ready to go home and be with Jesus”–wow). As a young man on the Autism Spectrum he had a hard time understanding that for him to receive the needed whole liver a donor would have to die, so he initially thought he would be murdering someone to get their liver. We had to reassure him that it was ultimately God who would decide who lives and dies and it would all be in His hands…we were not causing the other family’s desperate scenario…

One way my son was comforted in being the recipient of the Gift of Life from someone whose life was cut short was that we agreed before his procedure that if he didn’t survive we would be sure to donate all of his usable organs and tissues so that others would also receive such life-sustaining gifts from him. In fact, while we were waiting for “his” liver we were contacted by the Liver Transplant Team to be prepared as a back-up recipient for another “perfect liver”, a seemingly unprecedented event. At that time another child was higher up on the Transplant List but was so ill that it was possible that they wouldn’t survive the procedure and my son who was to be “waiting on deck” would then get that other liver. This situation was just so unbearable for me personally, thinking that already one family was losing a child for my son to receive a liver was already overwhelming, and it would be incredibly devastating that TWO people would die so that my son would benefit. We called family together and beseeched the Lord in fervent prayer on behalf of this other child…and thankfully they (apparently) survived the surgery and were still doing well more than a year later when my son finally received his transplant. Being involved in a Transplant situation is deeply moving, challenging, and ultimately a lifelong journey of discovery.

Thank the Lord for those brave and generous families who choose to give the Gift of Life during their own season of heartbreaking loss and bereavement!

After checking back at the original article here is a reply to my comment that may have been written by someone who is professionally involved with transplants, and this is such an encouragement to me as it may be representative of other’s perspectives:

  • Avatar
  • these are the stories that make participating in an organ harvest so rewarding. One family’s loss can lead to so many benefits for other families, it is unfathomable. However, the pain, the heartache the loss is so palpable, during our surgical timeout the donor identified…the directed donations are identified as well as research donations. These are huge and incredible gifts

 

 

 

 

Relating to Others in Pain

” And the children who bring him the most comfort are those he barely knows, at least outside of this center…With these peers, he does not have to explain. He gets no curious stares. They are, for the time being, his peeps.”

The room where I am my very best self

image is from http://www.carolecgood.com/genesisofcarolecgoodcom.htm

This is such a beautiful post by a woman with deep wells of the soul as both a wife and a mother.  I can relate to her experiences on several levels, though not (thus far) in the Cancer domain.

The quote above reminded me of how amazing it was to see my kids years ago interacting with other kids at a Siblings of Special Needs Kids Weekend retreat.  I had Never seen my kids before bond so quickly with complete strangers.  The shared “Sibling” experience was also something that goes beyond words.  There is an instant camaraderie with others who instinctively “get it”…and none of us needs to explain our background for validation.

This is similar to my own experiences in interfacing with other parents of Special Needs kids.  We live in a world that regular families rarely intersect, except during events like the random ER visits a “regular” kid may need from horsing around.  The endless waiting, confusion, helplessness, hopefulness, fear, determination, bravado, relief, and exhaustion are constant companions in our lives…not occasional nuisances during “normal” kid mishaps.  Having to weigh medical & therapeutic & educational “expert” opinions against your own deep well of experience and hard won knowledge of your unique child’s makeup and then attempting to synthesize these disparate themes into a cohesive whole is a lifelong song and dance.

I’m so thankful that authors, like the woman above, have been willing to bare their souls to share their profound journeys of life, love, loss, healing, endurance, and faith to move, inspire, and challenge us to also “take up our cross” with grace.

Blessings,

Valerie

I posted this comment on the above author’s posting too…

Your comment is awaiting moderation.

Thank you so much for sharing beautifully from your heart and the depths of your soul. Your words inspired a post on my blog here
https://specialconnections.wordpress.com/2016/10/19/relating-to-others-in-pain/
Blessings, Grace, Peace, & Joy (even in the midst of sorrows) to you and your precious family,
Valerie Curren

 

Pondering Purpose…

Know your life purpose. Like everyone else God created, my purpose is to glorify God and enjoy Him forever. I live out that purpose within the boundaries and limitations God set in my life. Every dream and goal I had changed the day we got James’s autism diagnosis. No matter what I thought my calling was when I was 5, or 15, or 25—the calling that overshadows almost every other goal I had is being James’s mom. But this wasn’t a mistake. This didn’t surprise God. When He created me with a set of gifts and calling, He did so knowing I would be James’s mom. That means I can still achieve every purpose He has for me within the constraints of my daily life.”

This is from:

http://www.keyministry.org/specialneedsparenting/self-care-special-needs-parent

If I substitute “Josiah” for “James” this practically applies Verbatim to me…I’m going to personally come back here occasionally & return to this post to further ponder the impact…and the implications…Blessings, Valerie

 

image is from this site:

http://www.experienceproject.com/stories/Am-Christian/2640791

Thoughts on Faith Crisis

Wounded and Doubting: How to Respond to Your Child’s Crisis of Faith

“Watching your child doubt is painful, and it tests parental faith.  Our first inclination might be to panic, but the best option is to pray, wait, trust, and walk alongside our children.”

How timely the email inbox can be.  I’ve been “avoiding” wading through the myriad communications in my email inbox as this process can take strength that is not readily accessible (and the bulk of these missives are “impersonal” and therefore on no real timetable).  Lately what strength I can muster has in large part been dedicated to helping my special son, Josiah, wrestle with his own crisis of faith…and reading the article above has now inspired this writing…

It started some time back with a seemingly random conversation with Josiah’s Respite Care Worker that Josiah overheard.  This Worker is a Muslim that has claimed to have been raised by both Muslims and Christians…he said one of his grandmothers was a “Christian Evangelist”.  Anyway the Worker and I were discussing the changing of faith of his father and stepmother, in that he claimed that both were “raised as Christians” but later converted to Islam…I had questioned whether or not either of these relatives had truly been “Christian” at all if they could alter their viewpoint of Jesus so much that He would go (in their minds) from Lord & Savior to just a “good man” and a “prophet”…

Anyway, overhearing this conversation seemed to start a spiral in Josiah’s heart/mind that if his Worker’s relations could abandon Jesus he too could be at risk of loosing his Faith…

My husband and I have each spent hours in counseling and prayer with our son as we attempt (with the Lord’s help) to assist him in navigating these treacherous waters.  It’s truly wondrous to see the depths of despair that assail our son as he wrestles with his sorrow and shame at even the possibility of ever turning away from Our Lord.  His pure heart has been laid bare in conversation and prayer and his unveiled desire for a deeper rekindling of his zeal for the Lord is remarkable in someone so young! (or anyone, for that matter!)

So we’ve been encouraging him in Scripture memorization and meditation, prayer, worship, and in carrying out the edicts of scripture…like taking “into captivity every thought to the obedience of Christ” (from BibleGateway.com)

2 Corinthians 10:5 King James Version (KJV)

Now we continue to encourage Josiah to work on this process of “taking into captivity” his thoughts that seem to want to stray into the arena of his fears.  As a person on the Autism Spectrum with tendencies toward “perseveration” (getting stuck on a topic) and with a known history of Anxiety and Depression and even OCD this situation has seemed to have created a bit of a Perfect Storm which our son must learn to weather and still Trust God, not allowing his anxieties to overwhelm and overshadow his knowledge of Truth, nor his relationship with the Lord…

Although it is difficult to see how he struggles and the pain this brings him, it is also glorious to see the Kingdom Work being done in his heart.  It is a privilege as a Christian parent to be able to share in the spiritual journey with our children and to find how our own historical struggles and wounds have uniquely prepared us to minister to them during these times of upheaval in our loved one’s lives.  We truly believe that this “crisis of faith” is actually part of his spiritual “manhood training” whereby he learns how to go beyond the milk of the Word and how to feed himself spiritual meat.

We’re also trying to help him internalize how we live by faith and Not emotions…in fact, I don’t know of one place in scripture where the Lord instructs us to consult our feelings and based on them decide what truth/reality is!  We’re assisting our son to lay that firm foundation on the Rock that is Christ Jesus, that is based on Scriptural Truth, and which can provide a safe harbor in Any Storm, because it is never dependent upon our fleeting emotions aligning with it to validate it as immutable Truth.

So unlike the article above’s trajectory, we are Not dealing with someone who doubts their faith, but rather someone who is incredibly broken by even the possibility that at any time he could become so deceived that he would be tempted to turn his back on the Lover of his Soul.  Hearing his heart cry out in prayer, expressing his hunger and thirst for God, and the articulate way (completely different that his human interactions) he communicates with the Lord has been such a sorrowful joy for my own soul too.  In the Kingdom of God my son has No Disability!  Perhaps, in some aspect of God’s plan, He sent us a “broken” (in this world’s eyes) child that we could see how in the arms of a loving God there is no (spiritual) brokenness in him!  In fact, hearing him pour out his aching heart to our Heavenly Father really serves to highlight how “disabled” is my own spiritual fervor in comparison!

What if in God’s Kingdom we seemingly “normal” people are the ones who are truly disabled and our “challenging children” are sent to help us not only to grow in grace and strength in the Lord, but to set an example of how we should live with “childlike” faith?

Peace & Joy, in Our Lord Jesus Christ,

Valerie

And in my current CD mix, as I’m “polishing” this up comes John Elefante’s “Pass the Flame” song, which always speaks to me, especially about Josiah.  The lyrics below from

http://www.metrolyrics.com/pass-the-flame-lyrics-john-elefante.html

and hopefully another link below to the music…Enjoy!

JOHN ELEFANTE LYRICS

OVERVIEW / LYRICS (SEE ALL) / PHOTOS / VIDEOS / NEWS

Pass The Flame Lyrics

from Defying Gravity

John Elefante - lyrics

Three a.m. – a baby boy; a new life began
I held him in my arms and
knew one day he’d be a man
And soon I’d have to tell
him that this world is not our home
We must give our lives to Jesus;
we are not our own

But for now just let me hold you,
a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make him Yours to keep
And then I whispered in his ear
There is something you must hear

Chorus:
Any way the wind blows
Don’t you think that God knows
We must pass the flame
We must pass the flame
We are the light in a darkened world
We are the fire on the arrow
We must pass the flame
We must pass the flame

She was a portrait of innocence
I took her by the hand
For better or for worse we vowed
that with Jesus we’d stand
We would instill upon our children
that this world is not our home
We would tell them that our
treasure is the promise that we own

But for now just
let me hold you a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make them Yours to keep
So let me whisper in your ear
There is something you must hear

Chorus

And Lord, help us teach Your children well
And turn embers in to fire
Make Your love their soul desire

The doctors came into the room;
the news was not too good I said,
“Daddy, if I could take your place,
you know that I would.”
He said, “Son, please don’t worry
go and be there for your wife
You know we’ll be together in
an everlasting life.”

Then I said, “Dad, I want to hold
you a little while
Let me adore you while you sleep.”
Thank You, Lord, for such an angel
Take him home to keep
And then he whispered in my ear
There is something you must hear

Chorus

Chorus

Songwriters
DINO ELEFANTE, JOHN ELEFANTE, GEORGE MARINELLI JR, GEORGE MARINELLI

Published by
Lyrics © BMG RIGHTS MANAGEMENT US, LLC

Read more: John Elefante – Pass The Flame Lyrics | MetroLyrics

Free Online Bible Study Courses

Learn more about the Bible, the Old Testament, the New Testament…or both.  Click on this link to get details and how to sign up:

http://christianuniversity.org/otntbg/

These courses are made available by the Our Daily Bread Christian University, fyi.  Our Daily Bread is a ministry that provides daily devotionals to make accessing Scripture easier for people.  Often these materials can be found at your local church.

I’m just passing this info along…I have no personal affiliation with Our Daily Bread, though I have enjoyed their devotional materials for years now.  Be Blessed!  Valerie