Here is a Psalm written by my special needs son Josiah, who interfaces with the Lord with an unveiled face. I am so blessed to see how he is truly bringing forth “fruit that will remain” for the Kingdom of God. Praise the Lord that He is working so vitally in & through this precious, unique, & complex soul. ❤
So Today is the Tenth Anniversary of our son Josiah’s Liver Transplant, & he has come such a long, long way! We are so thankful that God has seen fit to preserve his life & extend it & enrich it in so many ways. Today is also his First Anniversary of his marriage to his lovely wife Rose. Having Josiah be married to a Godly young lady is an incredible & unexpected blessing. God is so good!!!
I’ve written a number of times on the transplant anniversary & many times in relation to things connected to Josiah’s life & how the special needs situations challenged us in a number of arenas. In fact it’s likely that this blog wouldn’t even exist without the special needs dynamic being particularly difficult for me to personally manage so that I ultimately chose to use blogging, to varying degrees, as an outlet to offload thoughts, feelings, & details that needed a place of expression, even if I might be the only person who would ever read any of it!
So I want to reiterate points I’ve likely made elsewhere when reflecting back on Josiah’s life & just how far God has brought him along on his own journey. When he was very young, no older than 2, when we still lived in Northern Michigan, he was described by an in-home staff person as someone who would likely “never walk nor talk & never read nor write”. Hearing such things spoken over your child is truly a heartbreaking scenario. Thankfully this staff person turned out to be entirely wrong!!! Although J experienced (& continues to wrestle with) many developmental challenges he has far exceeded so many expectations for his life that you can really think of his maturation & success in so many arenas as truly miraculous!
We never thought he’d be able to learn to ride a regular bike, due to many balance & coordination issues, but he finally was able to remove those training wheels when he was so big that his weight was beginning to cause the training wheel supports to bend. He used to get Physical Therapy in a number of places, including at school. The last time the school PT evaluated him he was Raving about how far Josiah had come. He’d never had another student who’d achieved the milestones that Josiah had when having started from a place of such significant challenges. What a tremendous testimonial!
Educators in the special education domain never thought he would be as successful academically as he ended up being. We had Many Battles in the effort to get Josiah’s needs met, as prescribed by special ed law, & were only marginally successful, at best. But God…Josiah has been gifted with a fighting spirit & a determination to never quit & it has kept him going when obstacles would seem insurmountable with our human eyes. Near the end of his high school career when he was on-track to “graduate” (they did not really follow the law nor his IEPs to give him an “appropriate education”…massive sigh) the then Special Ed Administrator for our school district said of Josiah “never was I so glad to have been proven so wrong” in that he thought J wouldn’t graduate & would only achieve a “certificate of completion” & then go on to continuing special ed at a center-based program until aging out at 26 (which was Josiah’s wife’s trajectory).
Many of us thought that Josiah would never hold down a job & that he’d need assistance from “the system” in order to even have a shot at it. Well, after major battle fatigue from duking it out with special ed we all had a very bad taste in our mouths from working with “supportive” systems in our state. Ultimately Josiah found his own job, working PT for our city as a janitor in the city’s community center. He did get support in his job search from his long-term Respite Care Worker but he did not go through the state-level job support systems that he so wanted to avoid. Josiah’s boss attended his wedding & could not stop raving about how much he appreciates Josiah & the caliber of work he does as a janitor.
Josiah has experienced Many Medical Challenges over the years. The biggest hurdle was probably his Liver Transplant that happened 10 years ago today. Before facing that he was born prematurely & started life at only 2# 6oz, while his twin Brandon, who was normal size for their gestational age of 33 1/2 weeks was 5# 4oz. Josiah was hospitalized for 2 1/2 months in the NICU & didn’t come home until after Open Heart Surgery at 2 months old & just 4 pounds. He was hospitalized Twice in his first year of life with RSV & had an additional surgery repairing bilateral inguinal hernias that followed fairly quickly after his First Heart Surgery. He ended up getting myringotomy tubes in his ears before age 2 & had multiple surgeries to repeat this procedure. He had 4 stages of repair for birth defects & a second heart surgery when he was 4 1/2. He had a brain tumor removed (through the nose so no visible scarring!) & surgery on both eyes to unfortunately only partially correct a type of double vision. All of those surgeries, except for 2 of them, were before the Liver Transplant. He’s had 18 or 19 surgeries overall (I’ve, sadly, lost count)…thus far.
The road to the transplant was especially bumpy for me because Josiah required a whole liver, so it meant that in order for him to be transplanted someone else would have to die & their organs be given to others to preserve &/or improve many lives. I really couldn’t get past that part, the loss of someone else’s life for our son’s improved life. I would have much preferred to donate a lobe of my own liver to preserve my son than to see someone else lose their child so ours could go on, better than before. That heartache has never really gone away for me & I am so thankful that another family made the heart-wrenching decision to allow their own child to live on, in a manner of speaking, in the lives of all who would benefit from the sacrificial gift of organ & tissue donation. They truly did give the Gift of Life to us & likely many others.
We have come a long way from when we were first told that our son needed a liver transplant to where we are now. We had a wait of about a year & a half from when Josiah was placed on the transplant list until he ultimately got his new liver. We even had a time, about a year before his transplant, where he was put “on deck” for a “perfect liver” for him but that was first being allocated to a very sick pediatric patient through U of M. They called us & told us to have Josiah go NPO (nothing passed orally) in case that other patient basically died on the table but the liver was still viable for Josiah’s case. I mean HECK NO!!! I couldn’t bear the thought of TWO People dying before J got “his” liver, so we activated A Lot of Prayer Teams & lifted that other child & their family to the Lord & thankfully they pulled through & were able to survive & hopefully thrive.
After Josiah had his transplant his recovery was relatively quite quick & he really began to thrive in so many ways. For the first Seven Years there were rarely even any minor setbacks in his Liver situation, which was a tremendous blessing! However in early Summer 2020 we ran into a pretty big hiccup. We’d had some insurance changes through my husband’s work & the new insurance forced us to get Josiah’s meds through different services than from the University of Michigan’s Transplant Pharmacy, where we’d Always gotten his transplant related meds without issue. Ultimately this was when strange medication shortages were starting to hit the US & Josiah’s main anti-rejection med, Prograf/Tacrolimus was one that was being shorted at the pharmacies we then were required to use. Ultimately this lead to us not having sufficient meds & Josiah going into Transplant Rejection. He became jaundiced & was hospitalized & we had (for the first time ever) some bad experiences at U of M. This was in the height of the “pandemic” scare, which contributed to many of the problems we encountered. Doctors told us after the fact that “we almost lost the liver” & thus we came pretty close to losing Josiah. Thankfully God was still at work & our son has made a nearly complete recovery. Unfortunately he still is taking more meds than he did prior to that rejection bout & it is unclear if his liver functioning will Ever return to the pre-rejection level…this too is in God’s hands.
So Josiah has gone through a number of death to life to near death to life transitions from even before he was born. The doctor who delivered the twins, in the pre-delivery evaluation of my, at that point very, high-risk pregnancy literally said “we’ve got to get the little guy out before he dies” & scheduled me for a pre-term delivery to ostensibly save Josiah’s life. That first heart surgery, the night before, we were all in the same room together for the first & potentially last time as a family & we got pictures of his unscarred chest, that would never be the same again. A heart surgery baby older & larger than Josiah, in the next bed over in the PCTU (Pediatric Cardio-Thoracic Unit, a specialty ICU) ended up dying sometime after they were discharged from the hospital & his mom called me to cry together over this unimaginable loss. There was one time at my parents’ Cottage, where we’ve had many special family trips, where Josiah woke up in the middle of the night gasping for breath & my husband drove us to the ER with me holding J in my arms & praying for him & for us thinking that he was going to die in my arms before we reached the hospital & trying to calm him & ease his transition to eternity…
“Through many dangers, toils, & snares we have already come. His grace has brought us safe thus far & His grace will lead us home!”
Honestly my husband & I just had a huge, intense conversation touching on the overwhelming aspects of raising Josiah & my own lack of outlets to “process” things & I’m now so spent, & so is he, that I’m probably going to have to wrap this post up pretty soon…
We are so thankful for Josiah’s life & so blessed to see the godly young man he has become. He continues to surprise & amaze us. He continues to mature & surrender his heart to the Lord. He continues to learn in small & large ways how to lay his life down for those he loves. Watching him grow into being a husband & a son-in-law is both a challenge & a joy. He & Rose have a relationship that is built on the Rock that is Christ Jesus. They have regular times of Prayer, Praise, Bible Study, & Christian Fellowship. Their love & marriage is a testimony to the grace & goodness of our Lord & Savior.
We don’t know what the future holds, but we know Who holds the future. Josiah’s life exemplifies many scriptural passages like “we have this treasure in earthen vessels” & “for me to live is Christ & to die is gain” & “whether we live or die we do all for the glory of God”! We rejoice in this milestone & the possibilities of what God will continue to do in & through Josiah’s life…
There are many places to learn more about Josiah & his very unique journey:
Unexpected Blessing
You can search within this blog for “transplant” & come up with further writings that aren’t linked in some of the above posts. There are also many posts on autism, special education, & special needs parenting among other eclectic topics.
Archive of Liver Transplant Journey: https://jazzmanjournal.wordpress.com/about/
Josiah manages these sites:
JosiahsFreakShow.wordpress.com
JosiahTheSecretWeapon.wordpress.com
Archive of a friend’s transplant journey, managed by me: ChristLikeKara.wordpress.com
If you, or someone you know, is facing the complexities of transplant or other medical challenges you don’t have to walk that daunting path alone. There are others who have faced “similar” paths & they can be such an inspiration. I found reading about other people’s journeys, like Kara’s above, to be very edifying. I used to search the various blog platforms for other people going through these life-changing situations. Of course the Only way to Never be alone is to ask Jesus Christ to be your Lord & Savior. He promised to never leave nor forsake us! He promised that nothing can separate us from his love! He is the friend that sticks closer than a brother & the Lover of Our Souls. If you don’t yet know Him I hope that our testimonies of His faithfulness & provision through dark & dangerous times can be an encouragement for you to “seek Him while He may be found”.
God Bless You Most Richly!
Well it’s been a while since I’ve done a post here on my main blog so let’s just dive in. I met another mother of an autistic adult child the other day & offered to share a link to one of my blog posts that still gets attention all these years later:
Well in the course of emailing her that link I decided to see if I could find the original source blog & perhaps some other potentially interesting material either she or her daughter might enjoy. Here’s an excerpt from that email with some of those links:
Here is the original post that my above writing was in reference to, in the archive:
& here is an archive of her main blog:
https://web.archive.org/web/20170709115258/https://anonymouslyautistic.net/
I’ll do a quick WordPress search to see if there are other young ladies on the autism spectrum who have sites that Might be of interest to you &/or your daughter. By the way, Word Press offers free blogging & website services, as well as paid levels with greater functionality, so it could offer a “community” where you &/or your daughter may find like minded people with shared interests…
Ok searching just within WP there is Way Too Much to share in a casual email. Here is a link that has multiple blogs authored by the actually autistic:
Well I was searching within Word Press & found a huge amount of material that I hope to dive into, but in case I don’t, here, at least in an accessible manner, is what looked interesting to me, without digging in to any of these posts or sites & evaluating them. I’m sharing them here Purely FYI…
These are going to be in no particular order, as I’m frantically writing this post at the library & have just over an hour before I get kicked off their system. There are posts &/or sites that are About autism, that are Written By the autistic spectrum individual, or are written by a family member, some informational or research focused, & also some creative &/or artistic material that touches on autism.
Looks like I should check this next one out & possibly share a link to my original post in comments there:
The intimate link between ADHD and autism
https://lifewithautismorg.wordpress.com/
https://gradypbrown.wordpress.com/
http://thinkingautismguide.com/
THE AUTISM WALL AND COMMUNITY
https://gettingrealwithautism.wordpress.com/
Home
https://davisbrotherlylove.com/
https://neurodivergentrebel.com/
https://dadofautism.wordpress.com/
https://autisticconsciousness.wordpress.com/
https://ladyautismblog.wordpress.com/
https://navigatingautism.wordpress.com/
http://hollymollyartistic.com/
https://autisticinnerspace.wordpress.com/
https://onceuponalifeofautism.wordpress.com/
https://jtwiggar.wordpress.com/
https://autismchurchministry.com/
My Autistic Journal
Here’s one of the recent posts from the above blog, which will hopefully show:
I’m Invited to the Table of the Lord: The Lord’s Table & Hospitality
https://tallyaspiedad.wordpress.com/
https://pensiveaspie.wordpress.com/
https://autismthoughts.wordpress.com/
http://myonebeautifulthing.com/
Whoa, when I saw this next one my heart skipped a beat for I have the same theme for my archived site of a medically themed blog regarding my autistic son’s liver transplant journey, from my perspective: JazzmanJournal.wordpress.com
Adult Autism Awareness
Autism: The Real Truth
I’m going to go out on a limb & say, without reading the above (yet) that autism is most likely rare among the Amish because they do not vaccinate their children. Vaccines are apparently a Major Cause/Factor in developing autism. Robert F. Kennedy, Jr, has been doing significant work in exposing these dangers with an (his?) organization called Children’s Health Defense, I believe.
Here’s another one where I might need to drop a link to my Autism, ADHD, & girls post:
The doctor’s question about my son’s autism that changed everything
Home
Well that’s the end of my super eclectic collection of autism posts &/or sites of interest to me found today within Word Press. Frankly I wish that I had time to read & process ALL of them but we’ll see. If it turns out that I really end up digging in enough to comment elsewhere I’ll probably copy such writings back into my blog, possibly in comments to this post, in a new post, or even interspersed above within this post.
Blessings & Best Regards to all who stop by who are, who might be, who love, who ponder, who pray, who research, who play, who wrestle, who rest, who reflect, who create, who inspire, who thrive, who trailblaze, who amaze, who gaze, from within, without, beside, behind, beyond, above, & below Autism & The Spectrum. May God guide, heal, direct, instruct, indwell, protect, shelter, sustain, & love us all!
In Jesus’ Love
Special Connections 