Tag Archive | challenging

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

 

 

 

 

Advertisements

Special Needs & Church

I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…

http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/  “…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”

I agree with the exhaustion statement above .  Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts.  Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.

But, oftentimes church can be a battleground.  There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church.  Please see this story at these two links:  http://specialneedsparenting.net/autism-church/  http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/

Our family’s experience has been a bit more uneven than this.  When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital.  At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following.  Both twins were needing to stay in the NICU before coming home.  The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.

My husband and I had been quite involved in our Northern Michigan church before becoming parents.  We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry.  When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital.  It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant.  They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”.  I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend.  This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.

Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation.  There was something about things that never really sat right, though it was hard to pinpoint.  Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding).  They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time.  According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”.  Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area.  I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed.  When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying.  Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…

In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station.  There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family.  This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness.  What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).

Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care.  Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner).  The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend.  This situation was extremely stressful for all involved and for the most part we had no support from our local church.  I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc.  In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all.  That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.

When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home.  As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process.  If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him).  This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs.  The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.

It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us.  During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere.  Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.

Since our children were then mostly in their elementary years we were no longer battling the nursery situation.  Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval.  Josiah has always had a true worshiper’s heart for the Lord!  This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been.  That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.

Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display.  A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity.  His processing challenges and  poor coordination meant that he was rather bowled over and disregarded during a sporting event.  Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated.  It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen.  That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…

Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church.  The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains.  There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals.  Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness.  The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess.  Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?

Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting.  And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life.  The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith.  Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!

May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families.  May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities.  Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie

RANDY STONEHILL
Who Will Save The Children Lyrics

Cry for all the innocent ones
Born into a world that’s lost its heart
For those who never learn to dream
Because their hope is crushed before it can start
And we shake our fists at the air
And say “If God is love, how can this be fair?”

But we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

We count our blessings one by one
Yet we have forgotten how to give
It seems that we don’t want to face
All the hungry and homeless who struggle to live
But heaven is watching tonight
Tugging at our hearts to do what’s right

And we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

As we observe then through our T.V. screens
They seem so distant and unreal
But they bleed like we bleed
And they feel what we feel

Oh, save the children
Save the children
Save the children

Now we decide that nothing can change
And throw up our hands in numb despair
And we lose a piece of our souls
By teaching ourselves just how not to care
But Christ would have gone to the cross
Just to save one child from being lost

And we are his hands, we are his voice
We are the ones who must make the choice
And it must be now
There’s no time to waste
it must be you
No one can take your place
Can’t you see that only we
Can save the children
Save the children
Save the children
Please, save the children
Will save the children?
Who will save the children?

Lyrics taken from:   http://www.elyrics.net/read/r/randy-stonehill-lyrics/who-will-save-the-children-lyrics.html

 

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…