Today is the 5th anniversary of my son Josiah’s Liver Transplant. At the time of his surgery he was 17 years old & in the Summer break between his junior & senior year of high school. He is now 22, a high school “graduate”, and a warrior for the Kingdom of God! He is fearfully & wonderfully made, & extremely unique.
We have had many challenges in caring for Josiah’s myriad needs over the years. His Liver Transplant was one of the bigger hurdles we faced. Some of the other “biggies” include: 2 Open Heart Surgeries & Congenital Heart Defects (requiring lifelong pediatric cardiology care); Brain Tumor (removed surgically through the nose & requiring likely decades of follow-up care from Neurosurgery & Endocrinology); Autism Spectrum issues (requiring intensive interventions & lifelong issues for family, friends, & providers); Special Education Battles (learning of my son’s “rights” & advocating on his behalf was a significant stressor, especially since 2001–I’m still “regrouping” to some degree from the fallout of our last battle); Complex & Multifaceted Special Needs Issues & Dynamics (a lifelong dance of grace & frustration sometimes to a tune only you can hear that impacts the person, the family, & the world with which we all periodically encounter obliquely); Social & Emotional Isolation; & Transition Issues (the many dynamic needs that relate to going from pediatric care & supports to adult “services”, such as they are, across education, employment, & independent living needs in particular).
I had hoped to mark this 5th anniversary by finally having contacted the Gift of Life organ registry to initiate the process of thanking the donor family for their very generous gift of their loved one’s organs to those in need of transplant. However this contact is somewhat convoluted for me. We had been told before Josiah’s transplant that in some places he would never have even been put on a transplant list, due to his other special needs. This “fact” has complicated the thankfulness contact for me, since I don’t know if the donor family might be wounded further should they discover the nature of some of Josiah’s other challenges. As such, I’ve wanted to hash out these issues in person with some of the Transplant Team members who are best able to address these concerns (likely the Social Worker &/or Psychologist).
Anyway for the last about a year and a half neither of these departments has ended up being available to me during our transplant clinic visits, including the one about a week ago, even when we were told that we would see both disciplines. As such, having such “in person” discussions likely now pends our work with the new Liver Transplant Team, on the adult side of the hospital, starting in a few months. So even though this 5 year mark is great, especially given how well Josiah is doing overall, it is also a bit bittersweet for me personally since my internal & artificial deadline for contacting the donor family has been missed. This issue appears to be mine alone as no one else in my family seems bothered by us not having contacted the donor family nor having directly expressed thanks to them nor to the Gift of Life organization. (Note see the very bottom of this post for an example of my approach to this topic…)
Well, since I’m still in a bit of an unresolved place I will choose Not to ramble on about my various associated challenges. I have written many things over the years that may be of benefit to others who wrestle with complex special needs scenarios, so I will include links to some of that writing below. Also here are some links to other writings that address Liver Transplant &/or special needs issues. Blessings in Christ!
The above link is to an archived site that has more than 430 blog entries chronicling much of our journey to & through Liver Transplant. There are also many other aspects of managing Josiah’s complex life there. The original posts span the time-frame of July 11, 2012 to Dec 12, 2017 (& historical info, in the form of copied email prayer requests from November 28, 2009–about when we learned that Josiah had a brain tumor & numerous masses/tumors in his liver). If you want to jump right into that journey here’s the first post:
This next link is where I currently post updates about Josiah’s life, & to a much lesser degree a bit about what is happening in the rest of the family.
There are two online prayer communities that I regularly visit & participate in. If you are in need of prayer I would encourage you to visit either of these:
Josiah began some blogging after his liver transplant. He has a unique perspective from the patient’s point of view & also through autism spectrum & his strong Christian & patriotic American convictions. Here is where he writes:
I chose to save a friend’s Liver Transplant Care Page in its entirety before the CarePages service ended last year. This girl is a year younger than Josiah & was a classmate of Josiah’s twin Brandon or our daughter Clarissa at a small Christian school. Her class was the last graduating class of Dearborn Christian School in 2011, I believe. I chose to save her carepages as a labor of love for this family’s journey was parallel to our own though very different in scope. There was a tremendous outpouring of love & support for them reflected in the comments at Care Pages.
Here are some of my previous posts that deal with Transplant to varying degrees:
This is a lengthy, chronological post, incorporating many key aspects of our Transplant Journey with Josiah…It is primarily a copy/paste job from carepages with some organizational markers used for better ease of access.
This was inspired by reading of another transplant journey…
During one of my son’s more recent surgeries, possibly his last one so far, I shared some details of that experience…
After reading a Christian special needs blog post I was inspired to write of our experience a bit more.
This is a pouring out of my heart & frustration at the injustices we encountered during our special education battles. It was inspired by a blog post by a Christian special needs parent…
Another response to a Christian special needs blog post…
A response to a blog post by someone on the Autism Spectrum.
The about page for this blog which has a lot of background information about our challenges in the special needs arena…
This was also inspired by reading another Christian special needs parent’s blog posting. It deals with some of our challenges in a church environment & managing our son’s (& even our family’s related) special needs…
A brief blog post providing a glimpse at what one of our hospital clinic days might entail.
This was a response to reading another special needs parent’s post about being comfortable in a room at a hospital. It inspired me to share a bit of my perspective & experience. Ironically I was just reminded of this concept last week, at the hospital for my son’s last Pediatric Liver Transplant & Pediatric Nephrology appointments, when I remembered how familiar &/or comfortable the hospital setting is to me…hmm…
Another post in response to a Christian special needs parent’s blog posting, my view…
This one came up a couple different ways in some searches I did of my blog. It has to do with the autism-ADHD connection & was inspired by someone else’s blog post.
This post shared a bit of how the Special Connections blog was born…
Well, I’ll leave things here for now. Thanks for stopping by. Please let me know if any of these writings end up touching your life in some way. May the Lord guide & direct each of us as we navigate the sometimes treacherous shoals of this convoluted life. Blessings!
Here is an example of how I wrestle with the contact with the donor family scenario: This is one of my posts at Caring Bridge from 11-15-17…
One of my “plans” in the coming year is to attempt a expressing thankfulness contact with Josiah’s organ donor family, in particular it is my hope to make that initial contact before the 5th anniversary of his Transplant on July 30.
To that end, from a research/gearing up perspective, I was searching amongst this CaringBridge website to see if there might be other stories that could shed light on that process for me/us. This platform doesn’t make it easy to find others going through “similar” journeys as the searches basically just lead to names or site titles, not medical conditions or other key words…
Anyway I “randomly” found a CaringBridge site created by another family who ultimately ended up donating organs & tissues from their daughter/sister after she was severely injured in a car accident. This organ donation occurred in the same year that Josiah received his Liver, in 2013, but occurred in March & the recipients were in Wisconsin & Washington, so this is definitely Not the donor of Josiah’s new liver.
Anyway, I just wrote to their site & wanted to share that (likely one-way) communication here. Please pray for me/us as we approach that artificial deadline so that we can be “ready”, godly, & appropriate whenever we do finally attempt to reach out to Josiah’s Donor Family. This potential contact is something that has historically weighed heavily on my heart, especially since I don’t want our story to cause them further pain.
Prior to Josiah receiving the Liver the Transplant team told us that in some states they wouldn’t have even listed Josiah for transplant because of his other special needs, like there is some inherent discrimination within the organ procurement/distribution system against certain special needs in some locales. This info has made me even more leery of making contact with the donor family & potentially finding them to be offended or otherwise because of Josiah’s other challenges…a complication for an already complex internal process (at least for me)…
Anyway, reading the other side of the story, from the perspective of this particular donor family & what they went through prior to organ donation, is helpful to me in gaining insight about this whole process…In case you might be interested in the other family’s experience here is their site:
There is also further info on the donor, Jessica, at this funeral home site:
I also previously wrote about that aspect of the transplant journey in response to an article on multiple recipients thanking a donor family here, since it can actually take me quite a while to prepare to do something that I anticipate to be emotionally/mentally draining:
Finally, here is a copy of what I wrote to Jessica’s family. If you might have some constructive insight about this process & how to approach Josiah’s donor family, especially based on the test contact with another family below, I would definitely appreciate your prayerful input. I chose to include some of the “God-language” below because within the CareBridge site about Jessica it appeared that her family had some degree of faith-based, seemingly Christian, heritage. Even though I/we know that the Lord is the ultimate source of all Comfort & Healing, in the process of contacting Josiah’s donor family until having insight on their faith experience I would likely “tone down” that aspect of my writing style.
It is my hope that we may get to wrestle a bit with this contact issue & complexity at Josiah’s next Liver Transplant Clinic visit in January & then again in July before the “deadline” hits. Hopefully we can interface with the Social Worker &/or Psychologist and even someone on the Spiritual Care team in the hospital to “process” some aspects of what we are facing before attempting the actual contact, God Willing…
Thanks for continuing to support our convoluted journey with prayer & encouragement. We greatly appreciate this support!
“Dear Oliver Family,
Thank you for sharing Jessica’s end-of-life & Life-Giving story here on CaringBridge. Also, I wanted to say Thank You for giving the Gift of Life to others even while your family was encountering unimaginable grief.
My son was a Liver Transplant recipient the same year that Jessica (& your family) gave that priceless gift to others. He was transplanted in July of 2013 in Michigan, & we are so grateful that another grieving family also chose to give that magnificent gift even in the midst of many sorrows.
I haven’t yet mustered the fortitude to contact “our” donor family, but wanted to extend thanks to your family for being part of that wider group of grieving families that found a way to give life even while traversing the Valley of the Shadow of Death.
May the God of All Comfort continue to minister to you & your family & may He provide solace & peace for your souls as you each continue on your own personal journeys in this life before that day when you will see Him face to face & be reunited with your beloved Jessica.
In Christ & in Gratitude for the Gift of Life…
PS my son who received the Transplanted Liver is also named Josiah & I have recently begun sharing about him here:
I don’t know if any of you will ever see this posting, but if you do I would value your input on communications between Transplant Donor families & Transplant Recipient families. I was surprised to read what info was shared with you from the organ procurement organization & actually wondered if you had heard from any of Jessica’s Transplant Recipients (or their families).
I’ve been concerned about the way we might approach my son’s donor family & not wanting any aspect of that contact to cause them further pain…I guess no matter which side you view Transplant from it is a complex, fragile, & painful journey. May the Lord continue to ease your loss & renew your memories of your dearly beloved Jessica!”