Learning, Growing, and Finding the Light Through the Gift of Life

I’ve written a lot about my wonderful Bub.

The two most detailed and insightful posts about life with Caleb are my letter to him here and this post about who he is and was.

These posts help me keep his memory alive and share him and his splendor in a positive way.  There’s been another kiddo that’s been on my mind a lot this last year, too.  I haven’t mentioned this kiddo.  Really, I’ve not frequently, publicly discussed five people who mean so very much to me…to our entire family, very much in general.  These are people we talk about together, pray for, think about, and want nothing but the very best for.  They come from families we have never met, but sent Christmas cards to last month…Christmas cards I never would have thought I’d be sending that turned out to be the most meaningful ones I’ve ever written.

These five people are the recipients of Caleb’s liver, small intestine, kidneys, and corneas (we haven’t received word on the placement of the three heart valves that were procured).

Organ donation is a very private, confidential process.  Very little information is shared up front and we were counseled to not share our full names, dates, location, and what recipient information we did receive in a public manner for awhile to protect the confidential nature of the process.  There are many feelings that run very deep for both a recipient and their family, as well as a donor family.

A recipient and their family experience the joy of seeing their months or years long wait come to an end and all the happiness of receiving a life saving gift while at the same time coming to terms with the fact that that gift came with a very high cost.  There is also the complicated and complex nature of the surgery and recovery, which doesn’t have the desired outcome 100% of the time.  Meanwhile, a donor family is grappling with the death of a loved and cherished family member.  Both sides of the donation process are advised to be careful and cautious with one another’s feelings.  So, we have been careful to tread lightly so as not to cause undue burden or stress for Caleb’s recipients.

In Iowa alone, 2014 saw donors ranging in age from 2-92.  Not every organ donor has lived a long and full life that peacefully came to an end.

Some do.

Many don’t.

You see, to even be eligible to be an organ donor, a person must die in a hospital while hooked up to a ventilator, typically brain death.  Or, their heart must stop within a certain amount of time after being taken off life support, which is done in the OR, so as not to compromise the organs.  Less than one percent of deaths in the U.S. are the result of brain death, which is roughly 15,000-20,000 people each year.  The heart is a very resilient and strong organ.  It continues to beat even after brain death, but there is no blood flow to the brain.  Cardiac death is less favorable for organ donation and renders the heart not suitable for transplant.  Those who do not pass away in a manner that allows for organ donation may still be able to become tissue and/or cornea donors.

Then, there’s the issue of consent.  Many aren’t registered and some who are never discuss their donation wishes with their loved ones.  You’re wishes regarding organ, eye, and tissue donation should be something you discuss with loved ones!  There are currently 121,848 people waiting for a life saving transplant right now.

So, there’s a brief rundown of how complex and complicated it can be to find a possible donor in relation to the vast need.  Caleb being an organ, cornea, and tissue donor gave life to three people and sight to two directly through donation.  It also gave us, his family, so many positive things.

We owe so very much to the Iowa Donor Network for their support, encouragement, love, kindness, and devotion over the last year.  The benefits of donation are so often discussed in relationship to what it provides the recipient and their family.  I say so much comfort, hope, and peace is often afforded the donor family, too.  At least that has been our experience and the experience of the donor families we’ve spoken to.  So much of the strength we find to stand in the light comes because of the support that surrounds us as a donor family from people who are part of an organization that breaths life from death.  It is a true honor a blessing that we are able to be involved and volunteer with them.

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L2 with the sign she made for Nascar driver Joey Gase, who promotes donation with his Donate Life car.

On particularly difficult days…and even the easier ones…I’ll often think of even just one of his recipients and the improvement in their quality of life his gift made possible.  My two year old son is a life saving hero.  Through the default of association, his doctors, nurses, respiratory therapists, and every person who ever contributed to him being a healthy, vibrant boy is a life saver, too.  My lovie was blessed with some strong, healthy organs, eyes, and tissue that we took care of his entire life and that were kept that way by skilled medical personnel.  Then, when the unimaginable happened, it was time for his health and strength to be gifted.  They were the perfect Christmas gifts for those waiting and he gave them on his birthday.  His goodness is personified and exemplified in that final act.

Christmas gift giving with E nicely summed up the positive donor family experience our entire family has had.  E drew pictures for L2 as a Christmas gift.  One was a Donate Life America picture, another was Alive In Me Foundation, as well as Iowa Donor Network, and the Garrett’s Path logo.  I didn’t know she was doing this, but I thought it was so sweet and wonderful to see what a positive impact organ donation has had on her young mind.  She deems the logos of the organizations she knows to be involved in this work as worthy gifts at Christmas!

So, as we move forward into 2016 (wow!), I feel it would be a disservice to Caleb, his recipients, his care team, the Iowa Donor Network, and the Donate Life America movement if I didn’t take the time to acknowledge what a powerful and positive impact donation has had on our family during our most trying time.  Thank you for adding to the light in my dark places.  That light means everything to me.

-Jenelle

2 thoughts on “Learning, Growing, and Finding the Light Through the Gift of Life

  1. Janelle,

    Glad your blog was featured on IDN FB page….had not seen you expressing YOUR light previously.

    Beautiful, powerful….your passion continues.
    Ann Grosscup

    Like

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