Tag Archive | Disability

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…

Image result for 10 lepers

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

 

 

 

 

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Commenting on “Autism it’s Different in Girls” (& so is ADHD)

looking for images with this post…here’s a great Pinterest site

I recently read an intriguing blog post by someone who has autism but chooses to remain Anonymous…hopefully there will be many other nuggets to mine in her blog as well as the interesting comments sections filled with feedback & unique perspectives.

I had wanted (in my comments below) to go into the girls aspect of Autism and mention how there may be a continuum between Autism and ADHD…I’d read a book a few years back that laid out a good scientific case for this insight.  Later, while doing massive amounts of research for Josiah’s special education needs/case I read a number of things that talked about ADHD and how it presents in females…and in particular how there are some mothers of kids with ADHD (and/or autism?) who were never diagnosed themselves but see so many of their “issues” reflected in their kids struggle…apparently to the point that this is a “thing” that gets some degree of recognition in certain circles.

(ironically, while looking for images found these “circles” supporting my views!)

Autism: Different, Not Less:

(from the above Pinterest board…and almost every item ascribed to my son)

Just a few of the many disorders associated with ADHD. Many have similar symptoms and impairments. Getting the correct diagnosis is further confused by the high morbidity rates associated with ADHD. (View only)                                                                                                                                                      More:

the image above is from this pinterest page

I’ve meant to look back on this topic for my own “edification” but have been mightily depleted by the Special Ed case and fallout that it just hasn’t happened yet.  In our family of 6, 4 have officially been diagnosed with ADHD, & the two that haven’t (myself and Brandon, Josiah’s twin brother) exhibit quite a few of the ADHD traits (but perhaps not enough to rise to the clinical level of diagnosis…but then again who’s actually asking to be “officially” labeled)…so we think we probably both have some part of ADHD, at a minimum.  So if the continuum theory holds water, could it be that people that have ADHD are on the (potentially) mild end of the Autism Spectrum?

It’s so hard to really say and it may in large part depend on who you ask and what their personal practice emphasis (if you only have a hammer then everything looks like a nail and all!) might be…It is supported in research, I believe, that many times the parents of kids on the Spectrum have many of those traits themselves.  Certainly when “we” were growing up awareness of Autism “Spectrum” issues was nowhere near the level it is at now.  Also, if it is shown that there is any level of a genetic component to Autism and/or ADHD it would stand to reason that these things would run in families to some degree.

In my own family, from a retrospective perspective there could be arguments made that both my parents have possessed some traits of ADHD, especially when younger.  At least one of my brothers had many such traits when young and his son was also officially diagnosed with ADHD.  My other brother has a couple of kids that seem to have a lot of such traits too.  My husband wasn’t diagnosed with ADHD until adulthood, but it surely negatively impacted his academic trajectory when younger, even though he has learned to “compensate” for the ADHD issues as an adult, as have most of our kids.

Most everyone in my present family has some degree of sensory issue and we all possess varying degrees of emotional vulnerability, but thankfully this trait is at least somewhat intermittent in most of us!  Could these also be evidence of the “Spectrum” Continuum?

The author of the Autism in Girls post speculates on how important it is to find out what is going on with you and to get that diagnostic label (paraphrasing without re-reading her actual words…so I could already be distorting inadvertently her view) and therefore enable some degree of an “Autistic Identity”.  This apparently resonates with a lot of her readers, at least those who have posted comments.  It’s possible that she  draws in these more “anonymously autistic” people by the very nature of the type of blog she writes, as in people who are on the Spectrum, but can “fake it” sufficiently for the outside world to not know they are autistic…

It’s hard for me to relate to the “need” to find an identity, like in Autism.  And frankly I really do not “get” that aspect of our current culture that seems to think one has to discover a “role model” to emulate in order to aspire to things that no one “like me” has ever done before.  This will likely be controversial, and even offensive to some (sorry)–but Obama being “President” of the US should not really make it any more of less easy for any other “black” person to be the President…if the job was about the merits of the individual aspiring to the position (and who could argue that this election year!) and not about someone’s “identity”…and if he had actually obtained such a job based on his own merits (which he manifestly did Not do based on his abysmally thin resume)–no “white” man with his background, (lack of) accomplishments, known dangerous associates, and incredibly thin skin would have ever gotten near to the place of getting his finger on “the button”…but I digress…

Anyway, I don’t fully get why so many people feel the need to find such a label and thereby get some type of identity by identifying with a group.  Obviously, for anyone who knows me very well, I have spent much of my life in isolation, going against the flow, and refusing to join into whatever “group” (like Groucho Marx I wouldn’t be a member of any group that would have me!)…so the herd mentality is far from appealing to me personally.

I do, however, take a measure of identity from my personal faith…as in I’ve considered myself a strong Christian for the bulk of my life and that remains my primary identity…but I am much more likely to think of myself as a person (even as an intellect) than as a woman, wife, mother, daughter, sister, friend, employee, neighbor, parishioner, or any other ready label, per se…

I will acknowledge, however, when it come to my son with special needs, Josiah, when he was first given the PDD-NOS (atypical autism) label it lead to huge sighs of relief for myself and my husband.  That was because we were dealing with so many issues back then that Autism at least made a degree of sense and it was able to take a number of his significant behavioral anomalies under its umbrella.  It is also true now that Josiah appears to think of himself as “autistic” and he uses that label, perhaps as a shorthand code, as a blanket explanation for various aspects of his quirkiness, at least that’s how it appears to me (I am in no way pretending to speak For him)…

I have spent so much of my life seemingly on the outside of whatever the group thinks it is or what it does that it’s actually harder for me to acquiesce to the “herd mentality”, even in a church setting where people are looking to foster “unity”.  This may be a holdover of the “rugged individualism” of the traditional American ideal that I do internalize to some degree, my own individual personality & intellectual makeup that always goes into suspect analysis mode whenever everyone around me jumps on some bandwagon (or follows some pied piper toward yet another cliff), or even can be an outgrowth of having lived virtually my entire life “counter culture” (especially now that Constitutionally Conservative Christian is virtually a pariah position in this formerly free land of ours).  Perhaps being an “outsider” is enough of an identity that it’s not necessary for me personally to seek other labeling for myself.

As far as role models go, though, as a Christian the Only real role model would be Jesus Christ…and that represents a role that none of us could ever live up to!

Philippians 3:14King James Version (KJV)

14 I press toward the mark for the prize of the high calling of God in Christ Jesus.

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

(image from searching Google images for the scripture…may have been a youtube screen grab..but here is the link for the image…well it wouldn’t paste the link just another image)

So, thanks for listening in…and check out the original post below that my comment following pertains to…and let’s support those amongst us who are learning to speak up and speak out and encourage them to share their hearts with all who might choose to listen and care and handle our human frailties with tenderness and truth…

Blessings,

Valerie

Autism—It’s Different in Girls

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My perspective on this is a bit different in that I am a Parent of someone on the Spectrum who was diagnosed as “PDD-NOS” (Pervasive Developmental Disorder Not Otherwise Specified, aka “atypical autism”) and we got such a “label” for our son when he was still a preschooler. He also had many other issues that were primarily medical in nature and during key points of his life these medical needs really took preeminence (2 open heart surgeries, brain tumor, liver transplant, etc).

Our seemingly biggest challenge overall was in getting the educational system to even pretend to address his Actual Needs. We had years of frustration where they absolutely refused to acknowledge his autism diagnosis (in fact they never officially Did recognize that he was on the Spectrum, though his last Special Ed Case Manager did admit the obviousness of his Autism in private conversations with me). The school system was extremely derelict in its legally mandated duties to my son and we dealt with significant frustrations in this arena for the duration of his public schooling, K-12 (ironically special ed preschool did a Great Job with him, so our frustration was mightily increased by the torments that followed).

One extremely important aspect of special education law (in the US) involves Transition Planning & Services that are required to begin no later than the year the student is to turn 16. These services are to be tailored to the individual needs of the student and should be designed to facilitate their Transition from public school to Independent Living, Post-Secondary Education, and Employment. The ideals of this approach are laid out in detail in US law (IDEA, the Individuals with Disabilities Education Act & its later “improvement”), but our experience, and likely that of many others, reveals how far short of the legal mandates/standard things are…let alone compared to what should be “ideal” (as in identifying and addressing All areas of known or suspected disability, regardless of diagnostic “labeling”)…My son was “graduated” from high school not even possessing 3rd grade math skills and his now denied Michigan’s through age 26 special education because he “graduated”. I have a cousin with two autistic sons in Arkansas and her older son also “graduated” but struggled so significantly in college that she got him tested and discovered that his reading was only at grade school level even though he had a “diploma”. I don’t know how much she fought for him educationally but I know to what incredible lengths I went to over the years all to virtually no avail…

My son’s Primary Care Doctor, who has a practice devoted to complex special needs kids & families, including a significant cohort on the Autism Spectrum shared a chilling perspective. She said that the “high-functioning” autistic kids, like my son is now (he’s been significantly lower functioning when younger) are not coming close to having their needs met here in Michigan. If they are high enough functioning to be included in regular academic settings then often their “independent living” or functional “life skills” needs often go unaddressed. Once they get out of high school they discover that “the adult services industry” is woefully inadequately prepared to address so many of their needs. Also, because the many systems are so poorly managed and financially irresponsible and/or overburdened many times kids with significant needs do not come close to getting their needs met at any point…

Given that the “higher functioning” autistic kids are probably the ones most likely to be able to “handle it” to some degree in the regular/normal/neuro-typical world it would certainly seem in society’s best interest to help give them the tools and support necessary to foster their highest level of independence while young and thereby ensure a likely increasing percentage of such kids will grow into (nearly) independent adults. This would mean the possibility of significant resource allocation during the earlier years developmentally but should hopefully result in many more of these kids not needing nearly so much public support as they likely would otherwise had such intervention not have been provided. The arguments for early and intensive intervention for Autistic Spectrum kids have surely now made that perspective widely accepted and hopefully there has been sufficient time for data gathering to bolster this view “scientifically”.

In our family’s case, we spent many years and uncountable mental, emotional, spiritual, and financial capital attempting to get our local school system to DO THEIR LEGALLY MANDATED JOB…and these requests were based on data, diagnoses, and clear evidence of myriad needs (many in keeping with autism spectrum issues)…however the real bottom line was that my son got virtually Only what the school felt like offering whether it directly addressed his needs or not. And since they absolutely refused to acknowledge or address his Autism Spectrum issues (which were known as early as 2000 and had written behavioral pediatrician’s orders) he was significantly negatively impacted by not having received these necessary (and technically IDEA mandated) services.

The cost to our family (we had four kids within four years) was/is truly incalculable. I’m not “blaming” the school for all the issues, but had they done their job there are so many things that would have gone differently. For instance my son required significant therapeutic intervention, especially when he was younger, so we would take him to PT (Physical Therapy), OT (Occupational Therapy), SLT (Speech & Language Therapy), Sensory Integration Therapy, Music Therapy (which I tried for years to get the school to provide to assist in re-mediating his Severe Learning Disability in Math), Art Therapy, Psychological Therapy, Visual Therapy, etc…We spent so much of what should have been family free time shuffling him to and from these visits and when I finally stepped back from it one year due to personal overload and burnout basically watched him deteriorate before my eyes. He should have had year round intensive intervention provided by the school but they absolutely refused to analyze or address his very real needs and declines. I actually ended up dragging all my kids to random Vacation Bible Schools over a few consecutive summers just to try to give my Special Needs Son some degree of educational structure (and all the other kids really came to resent this as they got to attend these nearby VBS’s along with their brother). There were a few years when being out of school got so upsetting for my son that he lost his toileting skills…but they immediately returned when school began. This level of distress did not concern school staff at all but it caused significant suffering for my son…and the rest of us.

Well, this obviously went on Way Longer than I intended it to. I’m so glad you are putting your voice out there and speaking up on behalf of yourself and others who may not choose to speak but whose experiences and perspectives resonate with yours. My son has come such a long way from those virtually non-verbal and overwhelming sensory distress days to having discovered himself and continuing to refine his own unique voice. Although “movie quoting” and verbatim dialogue still punctuate much of his communication he can at least now speak as himself so much more freely now than ever before.

Loving someone with autism and living with someone on the Spectrum can certainly be a challenge (and I won’t minimize the major hardships of our personal journey historically &/or presently) but it also presents a tremendous amount of joy as well. Our “special” son is really the heart of our family in so many ways. He is a constant source of entertainment and his humor is so random that it continues to surprise and amaze us all, which is a huge blessing and counterpoint to the stressors. However he also represents a personal bridge between this world and the Kingdom of God (he is a very strong & outspoken Christian)…he has seen the Face of God while undergoing his Liver Transplant and (similarly to his dad) can have a nearly conversational relationship with the Lord. I really believe that his “autism” facilitates this transparency. Just as he doesn’t know how to put a “mask” on in his human relationships, he is virtually incapable of having a barrier between himself and God. Witnessing his Christian Walk is both humbling & encouraging for those who live with him. If he struggles to talk with us earthlings there is no communication barrier with his Heavenly Father…and that is a gift that no “labeling” nor lack of supports could ever diminish!

Blessings, thanks for all you shared, and thanks for letting me “wax eloquent” too here.

Best Regards, Valerie Curren

PS, I wrote more thoughts on your article at my blog here…I’d love to hear back from you on that, if you might be interested…

https://specialconnections.wordpress.com/2016/10/11/commenting-on-autism-its-different-in-girls-so-is-adhd/

this provocative image could lead us to consider these topics further…hmm; from:

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd

Commenting on Falling Forward

Below are my comments to an inspiring article here (and I’m copying an image below from that page too…it’s so inspirational!).  Please read her description of falling, wounds, recovery, and continuing on…especially in the strength only the Lord can provide…

https://angelaschua.wordpress.com/2015/01/21/falling-forward-tomber-en-avant/

Thank you for sharing this aspect of your journey…it is such an encouragement. I’m still in the process of getting up after a metaphorical “fall” in relation to helping champion my disabled son’s needs in relation to education and frankly am still reeling months after the fall. I’ve written about this topic in various ways, but particularly in the below noted posting at my “Special Connections” blog. Thanks for your encouraging words in the Lord.

Blessings, in Christ,

Valerie Curren

https://specialconnections.wordpress.com/2016/02/18/commenting-on-only-the-rich-will-have-rights-article/

I also allude to these struggles (in rising after a fall) here:
https://specialconnections.wordpress.com/frailty/

I’d love to hear any feedback from you if either of those posts might speak to you…

 

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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

Being a (Special Needs) Mom

just momThe above image is copied from this article, well worth the read:

I Am “Just” A Special Needs Mom

I have basically been “just a mom” for a long time now…my youngest just turned 18 and my oldest hit 22  near the end of 2015.  However the even bigger adjustment than to life in mommyland came when our twins were born 20 years ago…and one of them had significant and complex special needs.  The disabilities and medical conditions and multifaceted needs really transformed my life from “just” being a “stay-at-home-mom” to a mom of 4 (eventually) and one with significant health and other needs.   I became a “Special Needs Mom” and we became a “Special Needs Family”.  In addition 2 of my other kids, youngest & oldest, and my husband have been “officially” diagnosed with ADHD,  while the other 2 family members have numerous ADHD traits, so our house is always hoppin’!

Over the years the magnitude of the tasks before me and the extreme isolation I’ve experienced (some of which is self-inflicted) have meant that I have become overwhelmed by responsibilities, complex decision-requiring scenarios, my need to “process” things in a safe and responsive space, historical hurts that have impeded my progress or even ability to seek support from others, the sheer volume of conditions impacting our son’s life (as in there doesn’t ever seem to be anyone out there to whom I can really relate), the craziness of the schedule of a 6 person family and attendant duties (sports, academic, therapeutic, & relational support, etc), and having to occasionally address my own needs to try to avoid or overcome burnout.  Being a parent, and a special needs parent in particular, has intruded upon (and sometimes overshadowed) my marriage and other relationships.  It can easily become an all-consuming vocation.

Now that all my kids are adults, in looking back on their childhood years I hope and pray that they can come to a place of forgiveness for me (just as I need to be able to forgive myself), for all the ways that I let them down in numerous arenas of what a mom is “supposed” to be and do.  I’ve thought of my experience in parenting Josiah, in particular, to being akin to the scriptural shepherd leaving the flock (the 99) to go looking for the one lost sheep.  So many times and ways Josiah has strayed from the family flock and has required me to go after him, to find a way to bring him home, and to help him learn how to interact with all the other sheep to some degree.  Where I feel guilty, in part, is for whenever my husband and other kids have basically been amongst the 99 whom I’ve yet again left “alone” to go pursue that (same) one lost sheep.

Here’s a scripture that my husband shared with me years ago, and which gives me comfort:

He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.

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.

https://www.biblegateway.com/quicksearch/?quicksearch=young+gently&qs_version=NIV

The fact that God “gently leads” those with young means that he has patience and understanding for the plight of parents.  We parents are split beyond just addressing our own needs, we have to also care for the needs of our young, and the Lord understands this.  It’s sometimes hard for me to think of the gentleness of the Lord, for some examples of fatherhood lived out before me seem to stray more into arenas of harshness and criticism, so it’s important to take such scripture to heart and at face value, for me.

When we are in Christ’s Kingdom, part of His Flock, then we are those very lambs that He gathers “in his arms and carries…close to His heart”!  He deals with us in tenderness and mercy, love and compassion, gentleness and patience, carrying us when we cannot carry ourselves nor our own burdens.  This is especially true of those of the flock who also have young and those of us tasked with caring for another’s needs, like when our children are very young or when their disabilities and/or fragilities require our involvement more to the degree of  what is typical for a younger, needier, more vulnerable child than chronological age alone might indicate.

Thank you, Lord, that you remember that we are “dust” and that we need You to lead us Gently…especially when we are responsible for our young.  Thank You for placing this simple passage in your Word and giving your Holy Spirit to make it come alive in our lives.  Please continue to lead, guide, and direct my life (and that of my family and you dear readers who share this prayer) and to do so in gentleness, carrying each of us close to Your Heart!  In Jesus’ Precious Name, Amen…

Righteous Anger

I just read an inspiring article at American Thinker.com, here:

http://www.americanthinker.com/articles/2016/02/why_rightwing_pundits_assail_the_righteous_anger_of_patriots.html

“Anger is among the first emotions in life.  A newborn baby, eyes still swollen and shut, asserts: I exist, I feel, if you hurt me (or not), you’ll hear my anger.  Anger provides vital energy for protection and survival.  It is the emotional state induced by the life-sustaining impulse to protect, to defend against or attack a perceived threat.  Healthy anger is hardwired into the nervous system as a reaction to pain and suffering.  Righteous anger is the highest form of healthy anger.  It is the beneficial force for good that forms in the self-respecting hearts of principled people who have been lied to and who are suffering because of it.  Righteous anger forms under conditions of oppression when moral, legal, or personal contracts are broken.  It is the force that impels, sustains, and advances political freedom.  In the fullness of time, it is the righteousness of anger that determines if it is creative or destructive.”

While this article is primarily dealing with anger as a motivator to action in the political arena…I am taking solace in the more personal applicability of using anger in a healthy response to injustice and abuse…at least in trying to find an avenue to channel the (understandable, at least to me) fury that still seethes just beneath the surface following the brutality and ineffectiveness of our recent foray into protecting our disabled son’s rights via a Special Education Due Process Hearing Request…

Josiah is by nature a warrior at heart.  He is a True Survivor and has Overcome many battles both medically and interpersonally.  Sometimes his passion can exceed his common sense and it is at those times of increased intensity that I often encourage him to do the bulk of his warfare on his knees.  His prayers are truly effective and focusing his effort on the spiritual battle is the way that we are most likely to see the walls come down.

In recent days when both my son and I have been so upset, and even enraged, by what has (or has not) happened in the legal arena it has been necessary to remind us both of what scripture says about anger.

Ephesians 4:26-27 New International Version (NIV)

26 “In your anger do not sin”[a]: Do not let the sun go down while you are still angry, 27 and do not give the devil a foothold.

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.

The above quote is from here:

https://www.biblegateway.com/passage/?search=Ephesians+4:25-27&version=NIV

In my conversations with my son I’ve been referring to the scriptural principle without actually looking up the passage in context.  I’ve been focusing on the “be angry and sin not” version from the King James of my childhood, and did not realize the passage was followed closely by the “don’t let the sun go down on your wrath” passage.  That had always seemed a good practice in relationships, to not go to bed angry (especially with people you live with), but clearly the scripture provides no such relational limitation.

This is going to require me to rethink my approach to action going forward, in relation to the “special education case” that remains entirely unresolved currently.  I’ve been so upset with the trajectory of what happened that I haven’t yet been able to formulate a comprehensive course of action for moving forward toward some degree of resolution.  Also the intensity of the anger and disappointment has been such that calling or writing or meeting with people to discuss and strategize over this situation has needed to remain on the back burner for a while.  Now it appears, based on this scripture, that allowing the anger to unaddressed/unresolved could create a danger point in one’s soul.

Focusing on the injustice can seem an easy formula for getting caught up in bitterness in addition to disappointment and deep soulful hurts.  This is a hard place to be.  Moving forward in some type of action that can at least theoretically be effective for something as complex as our “case” is no simple straightforward task.  It requires reasoned regrouping and potentially some degree of research for other avenues of action.  As such it is unlikely to be something achieved before the sun goes down.  Can it be possible to retain the motivation that the extreme energy of anger provides without getting ensnared in the “devil’s foothold” of sustained rage?  How would God want us to address this?

These are matters that for me personally will require some prayer and contemplation.  If proceeding on a course of action, acting in “righteous anger”, it would seem counter productive to do so in a manner that manifestly violates scriptural teachings–especially if one espouses a Biblical Worldview, as I try to do, albeit imperfectly!

Perhaps there can be room for some degree of regrouping, such as happened with the prophet of old.  Following a tremendous victory he ran off and hid in fear and was so unable to care for his own needs that the Lord sent ministering angels to him for a period of time before he was sufficiently rested and refreshed to be able to continue on his way.

1 Kings 19: 3-9 New International Version (NIV)

Elijah was afraid[a] and ran for his life. When he came to Beersheba in Judah, he left his servant there, while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” Then he lay down under the bush and fell asleep.

All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God.There he went into a cave and spent the night.

Footnotes:

  1. 1 Kings 19:3 Or Elijah saw
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.

The above passage is from this site:

https://www.biblegateway.com/passage/?search=1%20Kings+19&version=NIV

 

Although this depiction seems more in keeping with being overcome by depression and anxiety it could indirectly apply to anger, I guess, in that I’ve read descriptions of depression as “anger turned inward”.  God knows how we are made/wired and certainly understands our weaknesses.  If He has given us a standard to live by then He will also give us the ability to live by it, even if it is only by strength that comes through Him.

One part of the above passage that is a great comfort to me is that God acknowledged, via his angel, that “the journey is too much for you” and He directly supplied what was needed to enable Elijah to then be prepared to undertake that significant journey ahead.  Although the passage may be somewhat ambiguous it is at least possible that this divinely provided physical sustenance is what enabled him to travel 40 days & 40 nights, as in possibly without any other food during that time.  Regardless, God Himself, via his angel, provided just what Elijah needed in order to continue on his important journey.  Won’t He do no less for us if we truly seek Him?

Lord, please give us wisdom as to how to proceed with the issues surrounding our “case”. May our words and actions be pleasing to you and in accordance with your will.  Would you please make a way, where there seems to be no way, that we may see Josiah’s needs met and our many issues and concerns addressed.  Please lead us to the right people, information, scriptures, organizations, and actions to have these complex situations sorted out in a manner that Glorifies You and is also for Josiah’s (and our family’s) greatest good.  I ask these things in the Mighty, Matchless, & Glorious Name of Your Son, Jesus Christ.  Amen

Rarity & Comfort

Here’s a snippet from an article from Special Needs Parenting, original is at this link:
http://specialneedsparenting.net/not-as-rare-as-you-think-you-are/I heart someone who is rare 2016

“YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

Raising a child with a chronic illness, disability or special need can often be a bone-achingly isolating existence.  The stares, exclusion, judgment, and hurtful comments can sometimes make caregivers like us feel like we are serving time in a penal colony, far from the comfortable normalcy of the average family. Without realizing it, well-meaning family and friends can push us further to the margins with their suggestions, pointers, and unwelcome recommendations.  (Thank GOD for places like Not Alone!)

Add to this isolation a rare diagnosis, and parents have an entirely different cluster of challenges.  In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.  For those caring for a child who has a diagnosis in this category, the stress only increases as…

  • Getting to that proper diagnosis can often be a huge struggle.
  • Cures are non-existent.
  • Treatments, if there are any, are extremely expensive.
  • Information on the condition can be difficult to find.
  • Practitioners specializing in the diagnosis are only available at major medical centers, if at all.
  • Schools are completely at a loss when it comes to comprehensive understanding of the diagnosis.
  • Pity or confusion from others seems to multiply exponentially when they learn a child has a rare disorder.

This cluster of added challenges can make us feel unenviably rare indeed.  We can buy into the lie that no one in the world understands what we are going through.  Nothing could be further from the truth!

YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

The Old Testament prophet, Elijah, bought into a similar fallacy after he had confronted the prophets of Asherah and Baal.  In 1 Kings 19, Elijah flees for his life, whining to God, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” (1 Kings 19:10, NIV, emphasis mine)  Later in the conversation, the Lord reveals to Elijah that he is certainly NOT the only prophet left.  He reassures Elijah and directs him how and where to unite with others who share his commitment to the Lord.

God has done nothing less amazing to refute the false, isolating beliefs of families in this day and age.”

Not As Rare As You Think You Are was first posted on February 17, 2016 at 12:00 am.
©2014 “Special Needs Parenting”.

Author Bio:
Barbara Dittrich
Executive Director at Snappin’ Ministries
Mother of 3 children, all of whom have a variety of diagnoses, Barbara is the foundress of Snappin’ Ministries (www.snappin.org) and currently serves as Executive Director. Besides being passionate about sharing the hope of Christ with parents, Barb is active in legislative advocacy, and serves as a partner and ambassador for rare disease.

I don’t actually know about the rarity of the diseases/diagnoses we’ve faced with our son.  When he had the brain tumor the type of tumor he had was rare for a male and for someone his age.  Many of his vascular atypicalities are extremely unique–does that equal rare?  Prior to the Liver Transplant the underlying liver condition, Congenital Absence of the Portal Vein, was a very rare condition.  If memory serves I looked this condition up at the hospital, accessing medical literature via computer not usually accessible to me seemed to show that this condition has only been written up a handful of times, I believe less than 20 times, over many years after having been first discovered during an autopsy in the 1700s.

When my son was an infant and still in the NICU I spent significant time accessing that hospital’s medical library looking for info on his then known conditions.  I couldn’t find material (granted I didn’t ask for assistance and it could be out there) that linked more than a couple of his conditions.

We’ve undergone numerous rounds of genetic testing, including “exome” testing where Josiah’s DNA was compared to immediate family members, in the search for the elusive, yet presumed, genetic syndrome he “has”…All syndromes suspected have been found to be negative.  At special needs events we’ve had conversations with others who have suggested the possible “condition” present, but subsequent testing has said No.  If he Does have a genetic syndrome, it is either so rare or such an atypical presentation of a more common condition that it seems unlikely to ever be identified, or apparently treated…

Whether or not my son’s conditions are “rare” or not…the sheer volume of conditions and the existence of so many issues overlapping and interweaving in his life makes it “seem” rare in totality.  I would Love to Hear from Anyone out there who has dealt with ADHD  AND Autism AND Congenital Heart AND Liver issues (& Transplant) AND Brain Tumor AND Learning Disabilities AND High Blood Pressure AND Sleep Disorders AND Neurological & Sensory Impairments AND Growth Hormone Deficiency AND Hernias AND RSV AND Ear Issues AND Eye Issues AND Depression AND Anxiety AND Obsessive Compulsive Disorder AND Asthma AND Prematurity AND Twinsanity AND IUGR AND you get the idea…

Here is a link to the blog from the group affiliated with the above quoted article, with apparently daily postings from a Christian perspective:
http://www.comfortinthemidstofchaos.com/

I even find the name of their blog comforting, for chaos is something we’ve come to live with, endure, and eventually embrace…it is a way of life for families dealing with Special Needs. I used to think the chaos was more a function of so many kids so close together and the energy & upheaval that accompanies that family composition. When one of my brothers started having a lot of kids I used that word “chaos” in describing family life implying that he might be facing that scenario too. It came across as offensive to him, perhaps his household wasn’t chaotic like ours was…or perhaps his wife kept the chaos enough under control that it didn’t intrude on his personal space the way our chaos intruded on my space…perhaps he didn’t like the nomenclature and found that offensive, or perhaps he had a tad bit of denial of their actual status.

Any way, I hope to partake of the offerings at the above blog on occasion. Being people of Christian faith, yet also facing the Fact of the Chaos that seems ubiquitous with Special Needs living and parenting is an important reality check. Just like an alcoholic will never approach AA nor get help for their alcoholism if they never admit/acknowledge that they Are an alcoholic, so, as a parent facing complex special needs scenarios (both present & historical) it is difficult to receive help for the “chaoticness” of life if one doesn’t first acknowledge that it exists.

Sometimes I have found the “advice” of people of faith to be frustrating in the extreme. Some seem to focus only on the God’s Blessing side of life, virtually supplying a ready-made guilt trip if you are experiencing more of an “in this world you will have tribulation” type of an existence. It’s not that God isn’t meeting your needs or supplying blessings and sustenance in the midst of the storm(s). However pretending that the hard road is really the easy road doesn’t offer much comfort to someone on a seemingly hard road pathway–a journey not necessarily of their choosing nor the result of sinful behavior or bad choices. When we, as believers, Must walk that difficult path (and of course the Lord is the One who supplies All that we need to endure and hopefully overcome) I for one do not receive much/any comfort from others who minimize or disregard the pain, hardship, and suffering that are constant companions for such a trek; in fact I do Plenty of my own minimizing (when Monday’s Doctor said something like “you have been through a lot” I looked at her funny because I really have no frame of reference about all of this and feel guilty for “whining” if I try to offload/explain some of where I “feel” like I am)…

Well, all that to say I have hopes to encounter a measure of comfort and support from the above blog. Perhaps it’s because I’ve been a lifelong reader, but sometimes there can be much gained from the written word of others who have also traveled a challenging path. Years ago I read a Reader’s Digest article about a man who survived a small plane crash in the frozen wilderness and hiked out to get help for the even more severely injured other survivor. This hiker had no appropriate clothing or supplies. He also had a broken ankle. His hardships and perseverance were a great inspiration to me. Having had a sprained ankle a few times and basically crying when a bed sheet touched it I cannot even imagine the level of pain he endured in his quest for survival…

Anyway, speaking from within the current emotional pain of the fallout of further disappointments and systemic “abuses” recently endured, I am hopeful to encounter testimonies via the above blog that will be an encouragement and inspiration.

We are not alone, regardless of what it may “feel” like. The Lord has promised “I will never leave or forsake you” and that is a promise worth clinging to! Especially during those seasons when “chaoticness” overwhelms…