Tag Archive | motherhood

Commenting on a Transplant Tale

I’m still coming to grips with a sea of emotions in relation to my son’s Liver Transplant (among many other medical, educational, and interpersonal issues surrounding his life and my intense involvement in caring for his myriad needs) so it is always with a bit of trepidation that I approach other’s stories about the Transplant Journey.  This arena represents a potential emotional hand grenade for me personally & it’s never certain what might cause the pin’s removal leading to potentially devastating internal destruction.

The article below was impacting enough that I just felt compelled to write a comment afterwards, which I wanted to document here and share with my readers and also give myself a known repository of this particular topic in case I want to return to this article again…like for inspiration to gear up for when we finally contact the “Gift of Life” organ registry to attempt a contact with the donor family to express our deepest gratitude.

Such a contact has thus far remained beyond my personal ability to approach except in the most theoretical terms.  It’s hard to know where to begin in expressing the deep gratitude for the life-giving sacrificial gift this other family has provided.  We spent so much time while waiting for the Transplant in prayer for the family and the donor, asking that the Lord would be involved in all their lives, that they would each have a saving knowledge of Him, that there would be such wonderful memories made and no regrets for things left unsaid or undone with the donor.  Contemplating the eventual loss of such a loved one was almost more than I could bear.  What do you say when the Liver Transplant doctor says that your son’s “ideal candidate would be a 12 year old gun shot victim”.  I was more overwhelmed by  the other family’s impending loss than I was by our own upheaval as we awaited this amazing and generous Gift of Life.

Complicating such contemplations is the nature of my son’s complex medical status.  Some staff on the Transplant Team mentioned that in some locales they wouldn’t even offer a transplant to someone as complex as my son (the implication being that his autism or other atypicalities, not necessarily medical in nature, may have lead to a form of disability discrimination against him).  How will this other family feel when they discover that their child’s Liver Recipient is disabled in myriad ways?  What if God has yet to have answered some of the prayers noted above and this family is in a spiritual desert and cannot grasp the value of my son’s life because of his disabilities?  What if learning about who has received their child’s liver they are even more devastated by who/what he is and this adds immeasurably to their grief, pain, and loss?  Should I spearhead the effort to contact them and generate conversations periodically within our family, or at Liver Transplant Clinic Visits (we have another bi-annual one next week), to help prepare us, or should I wait for God to so move on my son, husband, or other family members?  Should I be the one to make the contact or should my son (who has various communication challenges but is incredibly gifted in spiritual insight and compassion) attempt this solo?

Just writing some of these lingering questions down reminds me that this is a process that needs to be bathed in prayer.  I need to reach some place of peace and serenity so that regardless of the donor family’s experience/reception we will feel “persuaded” in our ultimate approach in contacting them.

Any of you reading this that know the Lord please lift us up in prayer as we continue to process and prepare to eventually make contact via Gift of Life and express our Thanksgiving for this family’s Gift of Life to our son!  We don’t want to be among the 9 lepers who didn’t return to thank the Lord for the healing…

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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:

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  • these are the stories that make participating in an organ harvest so rewarding. One family’s loss can lead to so many benefits for other families, it is unfathomable. However, the pain, the heartache the loss is so palpable, during our surgical timeout the donor identified…the directed donations are identified as well as research donations. These are huge and incredible gifts

 

 

 

 

Outside the Cool Mom’s Clique

“I never had time to think about all of the playdates, library story hours, and trips to the park that were happening in the town my children would go to school in.”

This quote is from the humorous posting, “When You Aren’t in the ‘Cool Mom’ Clique”(please check it out here):

http://www.scarymommy.com/arent-cool-mom-clique/?utm_source=bestof&utm_medium=email&utm_campaign=bestof

This original posting, though fun, it just a tad bit of a melancholy reminder of the difficult way things were when our kids were younger.  Though the author experienced many of her challenges primarily due to being a working mother, I experienced many similar issues in connection to special needs scenarios.  In the early years taking my “special” son out was virtually risking his life–he was hospitalized twice in the first year of life with a life-threatening RSV infection…He spent roughly 3 of his first 12 months being hospitalized for surgeries and/or infections.  Later on it was the seemingly endless parade of therapies & doctor’s visits…Perhaps All Mom’s feel on the outside for one reason or another!

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Commenting on “Caught in the Act of Bad Parenting”

“Now I’m a single mom who feels emotionally and financially tapped out raising a kid with a rare medical condition. Adding to the stress, my child has ADHD and ODD, which can’t be solved with a pill…”

This  quote is from the below posting (check it out)

https://lipstickandplaydates.wordpress.com/2016/09/11/caught-in-the-act-of-bad-parenting/

where a mom bares her heart.  It’s not easy to be this transparent with our struggles, so I really wanted to encourage her.  I’ve personally felt such tremendous isolation so many times in the process of trying to raise a special needs child and that’s while having an intact marriage and supportive husband backing and shoring me up along the way.  Either way I can’t imagine enduring such a challenging journey alone and how incredibly painful and overwhelming that  process likely is.

COMFORT IN SUFFERING? O yes! I hope you will share my joy over this precious scripture and make it one of your favorites too. I know it seems hard to feel like God gives comfort in suffering, but He promises to do so, and I have felt the comfort before, so I know He will give it again.:

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I hope (and pray) that the Lord is making Himself tangibly available to her and that she (& all of us bearing the burden of Special Needs Parenting) are experiencing that “Peace that passes understanding” and the “comfort in [our] suffering” that only the Lord provides.

Blessings to All,

Valerie

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Thanks for being so real here. May God give you Grace & Strength…and glimmers of Hope when you most need them. I don’t know if parents without special needs kids will ever really “get” what all of us in the (typically un-chosen by us but Chosen by God) club of Special Needs Parenting have learned, what pretty much goes without saying. There aren’t really enough words to come close to articulating the loss, despair, terror, anger, confusion, frustration, triumphs, hopes, dreams, persevereance, faith, and even Joy in the Midst of Sorrow that seem ubiquitous to our experience.

I have many times found comfort, encouragement, and inspiration in the writings and stories of other special needs families…here’s one place where I have personally found such special sustenance again & again…

http://specialneedsparenting.net/

Please Hang in There–You are NOT Alone! Blessinegs, Valerie Curren

I just realized the date you originally posted this, 9/11–the 15th Anniversary of that tragic turning point of a day. Not everyone outside of NYC has forgotten (some of us Never will!)…my special son in particular is very mindful of the tragedy of that brutal assault of a day. We continue to Remember, Reflect, and Revisit those events so that we can honor the memories of the lost, exalt (and hope to emulate) the heroism of the brave, and continue to pray for Comfort, Peace, and Closure (if that’s even possible) for the bitter, bereaved, and broken…in Christ, Valerie Curren

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The image above is from this site:

http://www.crosscards.com/cards/patriotic/9-11-memoriam/