Tag Archive | Autism

Son’s Surgery Stream-of-Consciousness

So I’m back in the University of Michigan Hospital for yet another surgery for my son, Josiah.  This is now his 18th surgery…but thankfully not one of the biggies (Open Heart, Brain Tumor, or Liver Transplant).  During the pre-op preparations he told one of the cute nurses “Surgeries are my hobby!”…& being autistic he wasn’t exactly joking…

This is the first time he is having the surgery In the New Mott Children’s portion of the hospital.  The last 2 surgeries were in the adult hospital even though the New Mott was available.  His Liver Transplant being done in the University Hospital was more of a challenge since we were told it would be done in Mott & he/we weren’t prepared for the lower key aspect of care on the adult side.  Being autistic, a Developmental Disability, means that my son is in many ways “younger” than his chronological age & he still appreciates at least some aspects of Pediatric medical care.

Today’s surgery involves the Pediatric Urologist, as these are birth related defects that require intervention.  I believe he may always need to see the Pediatric Urologist if he has further issues in this domain as an adult Urologist wouldn’t be familiar with the particular needs & concerns that go along with birth defect concerns…at least that’s the rationale why he will always be seen by Pediatric Cardiology for his Congenital Heart defects & cardiovascular management, so I’m assuming it may be similar with Uro.

Today I’m really tired from a lack of sleep for the last few days…& possibly additionally fatigued by some degree of emotional strain, just because surgery is still scary & dangerous even if it’s not being done on a vital organ, per se…I doubt that there will be much good sleep in his hospital room tonight either, but maybe he’ll be lower key in the post-op phase & both of us can get some naps in…

Being at U of M is fairly “routine” for Josiah & I so we may not be so cognizant of how many other people who are here for medical care are facing dire experiences.

The electronic computer screen in the Pediatric Waiting Area on the 2nd floor of New Mott has space for 78 cases…& 77 of these spaces were filled in–Wow!  I wonder if PCTU (Peds Cardio-Thoracic Unit) still has its own separate waiting room like it did back when Josiah experienced his 2 Open Heart Surgeries, if so there could be more than 80+ kids having surgery here today…Honestly that could be the case any way in that the 78 case space may only reflect the current cases.  Josiah’s surgeon had at least 3 surgeries today & certainly many of the other surgeons would have more than one surgical case/day.

Although J & I usually feel comfortable & safe here at U of M there are many others here that may be completely overwhelmed.  I know when I first came here when Josiah was an infant & transferred here from his birth hospital by ambulance the whole experience was surreal & intense.  I hope most of these kids & families are just briefly passing through & not looking at lifelong care in multiple arenas of intensity like with Josiah.

I went to Guest Assistance to get a new Parking Pass, & am glad that they have finally reverted to issuing them for 3 months, not just one.  It’s a blessing that they provide this service for people of limited means.  I’m also thankful for the possibility of getting some reimbursement from Josiah’s Insurance for meal costs.  It somewhat takes me back to those more intense days where I’d get those vouchers from Social Work & then go down to the Hospital Cashier on weekdays to get those funds…I’m also thankful for U of M’s financial assistance program that allowed me to personally get some medical without having further out of pocket costs beyond what our insurance provided!  If not for that assistance I likely wouldn’t have taken care of certain medical needs, at least not as quickly because the out-of-pocket costs would have been prohibitive…

I’m so thankful for the amazing quality of care Josiah has received at U of M for these 2+ decades!  This place & the people who work here are blessings!!!

This is the first surgery that had me issued with a pager that could display text messages.  Though that is quite convenient to get written updates it also reflects the diminishing of personal contact & care that a face to face with an OR nurse or student doctor could provide.  There are pros & cons with either approach…hmm.

This is the first surgery we’ve experienced with a group of people praying for us who are also checking in & communicating online to the degree the other blogs have been (CTH & Stella’s).  It’s bittersweet in that these are people we don’t personally know but they seem, in some respects, more interested & invested in what’s happening with Josiah than some of the family, friends, & church family we have…I wonder if I was “on Facebook” if there would be more of those type of interactions–but I doubt I’ll ever join & find out.

Tonight being the night for Skyline Café, the free food & music event that happens on Thursday evenings, I hope that I’ll be able to get a “real” meal there, since it’s only got a one hour window & it might just overlap when Josiah is getting out from under anesthesia.  I meant to pack up some type of lunch for our trip today, but my sleeplessness lead to even more forgetfulness than usual so I forgot!  At least there are some snacks in my collection of hospital trip crap to help tide me/him over.  I really hope the staff remember to give Josiah dextrose to help with blood sugar…

Gotta page to talk with the doctor so gotta run!…

Feelings

This a beautiful post that seems to encapsulate some aspects of the autism experience from within. I’m so thankful that some people will choose to open up & share their unique insights from their personal perspective. I hope to get my autistic son to read the original post some time & see if he actually relates to this description of emotional/sensory overload.

Image result for feelings scripture

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

Here’s what I shared with the author:

valeriecurren
Beautifully & eloquently stated. This helps me understand my autistic son just a little bit better. Thank you for sharing this!

Image result for feelings scripture

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

Image result for feelings scripture

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

Please read the original post, I will revisit it too, which is why it’s posted to my blog, for it is precious & in her own words!  Blessings, Valerie

autismthoughts

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it…

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Get Started on WordPress.com with Video Tutorials — Discover

Browse our library of video tutorials to help you get going on WordPress.com.

via Get Started on WordPress.com with Video Tutorials — Discover

OK, I admit it…I wanted this on my blog so I could find it again…and to share it with my son, Josiah, who is just starting out with his own blogging voice–as someone who’s on the Autism Spectrum & a Passionate Outspoken Christian.  Check him out here:

JosiahsFreakShow.wordpress.com

 

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This is Josiah from a few years back…a fitting picture for his blog title, hmm?

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Josiah with Clarissa, Nathaniel, & his twin Brandon–what a bunch of hams!

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Josiah running Track for his High School, about 5 years ago…

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Josiah peeking out of his then bedroom window (he’s got half our basement now) during an air-soft battle with sibs & Dad a few years back…

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Josiah Skywalker battles his “lookalike”…kind of like Luke in that cave…

Thoughts on “I Can’t Do This Special Needs Life”

Image result for special needs life

from Bing.com image search for “special needs life”

It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time).  Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes.  I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

from: http://www.keyministry.org/specialneedsparenting/2017/6/9/i-cant-do-this-special-needs-life

The bolded part in the above quotation is what got me back typing away here.  Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry).  I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School.  At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break.  Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living.  Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

Image result for sick child

from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace!  These extensive trials have driven our family to the Foot of the Cross time & time again.  And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution.  It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

  • Pregnancy problems/IUGR (Intra-Uterine Growth Retardation AKA small for gestational age)
  • Prematurity, Very Low Birth Weight, 2# 6 oz (qualified for SSI in the hospital)
  • Failure to Thrive
  • Congestive Heart Failure
  • Complex structural birth defects
  • 2 1/2 months in the NICU (Neo Natal Intensive Care Unit)
  • Ambulance ride to a different hospital for Open-Heart Surgery
  • Living apart from my husband for 3 months during heavy season of stress
  • Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…
  • Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…
  • Urinary Tract Infection delaying hospital discharge, I discovered this
  • Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old
  • Breathing Machine (Nebulizer) with meds & chest percussions
  • Seemingly endless vomiting with practically every feeding and/or dosage of meds
  • Various Proprioceptive & Vestibular interventions, brushing, joint compression, etc (mostly done by me)
  • Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery
  • Visiting Nurses
  • Medicaid
  • WIC
  • County Health Departments
  • Numerous Medical Specialists with sometimes conflicting advice
  • In Home Therapy visits (PT, OT, Speech)
  • In Home Teaching, in three different cities
  • Preventive Care Services, support for a family in near crisis
  • Being written up in our local paper because of the uniqueness of our situation
  • Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…
  • Major behavioral & emotional problems
  • Balance Problems & Hearing Loss needing Myringotomy Ear Tubes surgically placed numerous times to help correct
  • Autism Spectrum issues, but not diagnosed early enough nor classic enough to get real help from the school system
  • Sound Field System in School
  • Neuropsychological Testing numerous times, virtually all data was ignored by school “professionals”
  • Unspecified Neurological Impairments
  • Balance, Equilibrium, Processing, & Sensory Challenges
  • Unusual Therapies; Sensory Integration Therapy, Music Therapy, Art Therapy, Social Skills Group, etc.
  • Early-On Program
  • Developmental Assessment Clinics
  • Virtually no “typical” twin experiences, nothing like what “the books” say
  • Complex staged birth defect surgeries
  • Positional Head Deformity, requiring an orthotic helmet to reshape the skull
  • Moving our residence across the state to be closer to adequate medical care (husband’s job change & our near year separation, except for weekends, during the entire selling/moving process)
  • Second Open Heart Surgery at about 4 1/2 years with statements implying that another heart surgery would be likely within a decade (though a 3rd surgery in this domain still pends)
  • High Blood Pressure, Blood Pressure Monitoring Machine, spotty compliance
  • Numerous Medications over the years
  • Social isolation for our son in particular, but our family as well, due to the complex challenges & lack of awareness on other people’s parts
  • Years of car rides, mornings, announcements of plans changing, etc that resulted in ceaseless screaming, hitting, kicking, etc…=familial upheaval
  • Years of deliberate “button pushing” of all family members, being a deliberate atomic bomb within the family=massive stress
  • Lifelong Pediatric Cardiology care
  • Lifelong Pediatric Urology care
  • Massive battles with Special Education after having positive Special Ed Pre-School experiences
  • Only one month in “real school” with his twin brother
  • Having to “repeat” a year of Special Ed Pre-school due to educational negligence, incompetence, &/or indifference & my own weaknesses in entering the fray
  • Severe Learning Disability in Math, misinterpreted as global delay
  • Tutoring
  • Being told for years we needed Advocacy help, but rarely finding any available and/or affordable
  • Community Mental Health, home & center-based care
  • Insurance challenges in getting needed services covered/provided
  • Respite Care, both in home and center based
  • Chronic Bedwetting, well into the teen years
  • Multiple Sleep Disorders requiring CPAP usage
  • Congenital Double Vision, eventually “corrected” surgically
  • Student Aides/Para-Professional involvement only after major battles with Special Ed even though doctors insisted this was vital at the outset of regular schooling
  • Massive Educational & Disability Discrimination…any real recourse here???
  • Learning about free advocacy training and materials but when pursuing them discovering the programs were cut; same now in relation to job training issues
  • Having a Brain Tumor and Liver Masses discovered at virtually the same time
  • Getting Cancer evaluations
  • Human Growth Hormone deficiencies, but no real treatment because of other complicating issues
  • Being accused by school staff of inappropriate behavior that he didn’t do, and not allowing a parent to be present to assist him in processing the situation
  • Brain Tumor removal through the nasal passage, so no visible scarring!
  • Ultimately needing & getting a whole Liver Transplant
  • Lifelong Liver Transplant Clinic care
  • ADHD, Depression, Anxiety, OCD (Obsessive Compulsive Disorder)
  • Unexplained dizzy spells, EEGs don’t reveal reasons
  • “Hypoglycemia”
  • Emergency Room Runs for injuries & once for an environmental breathing issue that I thought meant my son would die in my arms before we reached the hospital
  • Pervert encounters in the park as a child and at school as an adolescent, with major emotional fallout
  • Spiritual battles that periodically resurface & blindside & overwhelm him
  • Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart
Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce.  It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through.  Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience.  Whatever I have become, much of it is now attributable to being a Special Needs Mom.  It has become a burden, a badge of honor/courage, and ultimately a blessing.  In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities.  We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could.  As my eldest son has said, “Josiah is the heart of our family!”  So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness.  He still sees the Lord with “unveiled face”, being so pure of heart.  The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God!  It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

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Image from a Bing.com image search for “beauty for ashes”

 

 

20 Years Later…Red Wings Rocked The Joe

My husband just showed me a Facebook video (I’m Not on Facebook!) post of the amazing Detroit Red Wings vs Colorado Avalanche fight from March of 1997 at Detroit’s Joe Louis Arena.  What awesome hockey back in the day.  We still miss those Red Wings champions (and the ability to watch them on regular broadcast TV)…Here’s a version of that fight as posted on YouTube.com.  Enjoy!

Our oldest son just stopped by and mentioned that this fight gets posted to Facebook pretty regularly so apparently a lot of people enjoy reminiscing about that brawl…

We also found a great write up about this momentous event here, it’s worth the time:

http://www.freep.com/story/sports/nhl/red-wings/2017/03/23/red-wings-avalanche-fights/99495676/

I ended up reading the above Detroit Free Press article aloud to my husband and during the reading our son, Josiah, & his Respite Worker came home & started listening in too.  Ultimately the Freep recounting of events sparked an interesting conversation amongst the guys about Detroit Sports and some of the many changes (mostly not for the better) in the modern era.  It’s great to see my Autistic Spectrum son participate in a lively interaction with other guys in a domain so many love!

Josiah had found a documentary on Netflix about the Detroit Pistons in the Bad Boy era and some of the clips in that “flick” basically amazed our kids…and not just because of the pretty outrageous outfits!  Netflix can be such an eye opener when it allows glimpses into a past where masculinity was allowed freer & fuller expression in our society.  Sports have become “safer” now in many respects, at least perhaps physically…but certainly not “safe” in terms of the ability of people to communicate freely about their viewpoints without sometimes extreme consequences.

Some commentators that I enjoy reading &/or listening to refer to the “Arena of Ideas” in regards to social/political thought & commentary and how it used to be understood that it could be a knockdown, drag out, free for all.  Doing genealogical/historical research in old newspapers can be a real eye opener when you see how the Left/Right divide was clearly on display and openly advocated for by a particular “rag”; now virtually only the left side is on display, but presented as middle of the road…but I digress. Seeing that historical brawl in the hockey “arena” gives us a tangible representation of what a free-for-all of Ideas in the Arena could/should look like.  Have an opinion, take a stand, take on all comers, protect your teammates, defend your honor, don’t go down without swinging, don’t deliver nor tolerate the cheap shots, respect your opponents while doing your best to defeat them, never give up, never surrender (in Churchill’s voice, of course), when knocked down get back up again, stay in the game, go the distance…

There are several scriptures that speak to this process as well, at least for me:

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.®Used by permission. All rights reserved worldwide. Excerpt from BibleGateway.com

Of course, this presumes that you are doing things that the Lord would approve…

Proverbs 24:11 Easy-to-Read Version (ERV)

— 24 — 11 If you see someone on their way to death or in danger of being killed, you must do something to save them. 12 You cannot say, “It’s none of my business.” The Lord knows everything, and he knows why you do things. He watches you, and he will pay you back for what you do.

Easy-to-Read Version (ERV)Copyright © 2006 by Bible League International; Excerpt from BibleGateway.com

I believe this passage is one that supports the Right to Life position of protecting all innocent human life during the entire lifespan…

 

Ephesians 4:26 New International Version (NIV)

26 “In your anger do not sin”[a]: Do not let the sun go down while you are still angry,

Footnotes:

  1. Ephesians 4:26 Psalm 4:4 (see Septuagint)

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide. Excerpt from BibleGateway.com

I reference this particular passage periodically with others in relation to the fact that anger in and of itself isn’t wrong…otherwise Christ himself, the only sinless human, would not have displayed it.  Where we get into trouble is in what we Do with our anger.  Having “Righteous Anger” is not an oxymoron!  However, we all need the Lord’s wisdom to act upon such anger in a manner that is pleasing to Him, and productive to the situation.

Ephesians 6:12 King James Version (KJV)

12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

King James Version (KJV)Public Domain

Excerpt from BibleGateway.com

This scriptural passage reminds us that the true battle is a spiritual one.  It is Always Light vs Darkness, Good vs Evil.  We, as believers, need to keep our eyes fixed on the Lord, follow His lead, His Will, and… 

James 4:6-8 New International Version (NIV)

But he gives us more grace. That is why Scripture says:

“God opposes the proud
    but shows favor to the humble.”[a]

Submit yourselves, then, to God. Resist the devil, and he will flee from you. Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded.

Footnotes:

  1. James 4:6 Prov. 3:34

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.  Excerpt from BibleGateway.com

Submission to the Lord is the key here.  We need to be surrendered to Him.  At that point those battles we face should be handled in obedience to His Will.  It means that we conduct ourselves in a manner that is pleasing to Him, even as we enter the fray.

Well, it wasn’t my intention to go off on that battle tangent, but I guess in my heart I’m some type of Warrior.  It ties into the many battles engaged in the Special Needs domains while attempting to champion my son’s rights & needs.  God equips us to do what we must, sometimes only giving us that fortitude once we are in that arena and there is no turning back.  I guess that Bloody Battle at the Joe was more of a meaningful metaphor than I’d realized when posting this message…hmm.

 

May the Lord Bless & Equip YOU for the battles you face as you seek His Face, surrender to His Will, and submit yourself to His guidance & presence in your life!

Your Fellow Warrior in the Kingdom,

Valerie

Here’s a final thought…be inspired by what the Lord can do in and through you…and be encouraged by the music & message here!

 

War in the Heavenlies

Uploaded on Aug 16, 2011

WORSHIP LEADER: RON KENOLY

ALBUM: JESUS IS ALIVE

HMD036

Lyrics:

Making war
In the heavenlies
Tearing down principalities
Standing firm
In Jesus’ victory
Making war
In the heavenlies
Casting down
Every high thing
That exalts
Itself against
The knowledge
Of Christ
(Repeat)

We do not
Bow our knee
To the prince
Of the air
For we know
The truth
Has set us free
And under our feet
He will shortly
Be crushed
And having done all
We’ll stand
In victory

(Repeat Chorus)

Our hearts
Are set apart
For the courts
Of the Lord
And we will not be
Bought or sold (Valerie ammended this line only slightly)
By His Spirit
In us
We will overcome
Pulling down
Every stronghold

(Repeat Chorus)

That exalts
Itself against
The knowledge
Of Christ
That exalts
Itself against
The knowledge
Of Christ!

 

  • License

    • Standard YouTube License
  • Music

    • “Making War In the Heavenlies” by Ron Kenoly

Both the video clip and the lyrics above are copied from YouTube.com

My special son, Josiah, will often blast the above song on his CD player and it reverberates throughout the house and our souls, encouraging us all to not give up, even in the midst of the fray…Josiah is an amazing warrior in the Kingdom of God!

Autism Outreach…touching lives

There is a moving story posted on the ukdailymail website here:

http://www.dailymail.co.uk/news/article-4446186/Mother-autistic-boy-moved-sweet-note-server-left.html

Please read the original article for extra details…It is such an encouragement to hear about others reaching out in kindness to a family during a time of struggle.  I have many memories from my Spectrum Son’s younger days where he had such challenges coping with sensory and/or emotional overload.  Had anyone ever done/said something similar to what was done for this family for us it would surely have become a treasured memory.  Thank you, Lord, for the “random acts of kindness” of strangers…for reaching into the midst of our struggles and lightening the load in unexpected and much appreciated ways!

Blessings to all,

Valerie

Image result for scripture encouragement

from a Google Image search for “scripture encouragement”

Below, the image is from the original article & tells much of the tale…

'Our server was gracious and sweet,' Heustess wrote in her post; she said her faith in humanity had been restored after the Cracker Barrel encounter

‘Our server was gracious and sweet,’ Heustess wrote in her post; she said her faith in humanity had been restored after the Cracker Barrel encounter

Read more: http://www.dailymail.co.uk/news/article-4446186/Mother-autistic-boy-moved-sweet-note-server-left.html#ixzz4fKb4S7sq
Follow us: @MailOnline on Twitter | DailyMail on Facebook

 

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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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:

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  • 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