Even though I'm "only" 31, I am all too aware of my mortality. I have been at death's door too many times to count through my life from birth! As you may know, one of the serious complications of my Treacher Collins syndrome is difficulty breathing due to a constricted airway, so I choke on food easily and must sleep with a breathing machine. I always need to be prepared for the event that I may die prematurely, leaving my large family (mom and 9 siblings) behind suddenly.
I have already made plans for my funeral--before any thought of a wedding! Ironic, eh?
First of all, what if I died right here in London, England, where I am studying craniofacial medicine? I would want my friends here in London to have a chance to say goodbye to me before I'm shipped home to Fort Wayne, IN
, USA. I belong to the American Church in London, so I would want my funeral there before my funeral in the USA. I have many friends at King's College London (my colleagues and professors in the Craniofacial Department), as well as in my church and out in the city of London itself. So a small funeral here in London would be a chance for them to say goodbye. If I died in London, I would want to be laid out in a traditional six-sided "toe-pincher" English style wooden coffin; those are the most dignified and simple coffins!
In the USA, whether I died there or was shipped home, I would like my funeral held at my Baptist church in the Fort Wayne, IN
, area, with two of my pastors (one present, one past) officiating; they are my Christian mentors.
I want an utterly simple
, dignified funeral service, as I have tried to model my life after my patron saint (and namesake), St. Francis of Assisi, who also lived an utterly simple life.
My service would be one where my family, friends, and many others would gather to celebrate my life as I lived it, and celebrate how my life inspired others as I faced and overcame adversity (craniofacial deformities, etc). My pastors would give the eulogies and share my faith with everyone, and anyone in the service who chose to speak up about what my life meant to them would be given ample opportunity to do so.
The music at my funeral would be played on the very same instruments I have played throughout my life--mainly piano and organ, as well as violin and guitar. My green
violin itself would be offered to a musician to use during the service! My favourite old Christian hymns would be sung: It Is Well with My Soul, Be Thou My Vision
, etc. My older sisters would sing (with guitars) The Lord's Prayer
and On Eagle's Wings
. A violin solo would be provided, using my green violin. At my funeral people would be free to contribute whatever tribute or song they wanted.
At my wake, I would want my body laid out in a traditional Irish/English wooden "toe-pincher" coffin (I am a proud Irishman by the way!
), ideally, one that I built or finished myself in an Irish style. (More likely it will be a standard American casket). Also at my wake, I would want my musical instruments--my Epiphone Hummingbird guitar and my green violin--laid out on display, along with some of my artwork (my drawings, paintings, etc). My self-custom-painted 1:100-scale SMITH AIRWAYS 747 model would be displayed too, along with some other unique items from my lifetime archive. I would want my written works, including my autobiography The Pancake Kid
, if finished by my death, displayed. All available photographs of me would of course be on display too.
Also at my wake and funeral there would be a book in which people could write down memories or thoughts on my life, to be presented as a keepsake to Mom and my family.
If anyone, after my funeral and all that is over, still wanted to do something to memorialize me, it is their option.
I would want memorial contributions to be made to the following entities:
1) St. Louis Children's Hospital (St. Louis, MO
) and J. W. Riley Hospital for Children (Indianapolis, IN
)--these were the two hospitals whose craniofacial clinics helped to rebuild my face from nothing since birth; I would want the money to go toward research and treatment of children's craniofacial deformities.
2) Guy's Hospital, London, UK, Dept. of Craniofacial Development--where I have studied and done research in craniofacial development as a student; to help further research in craniofacial development in the embryo.
3) Canterbury School, Fort Wayne, IN
--the private high school where my life turned around (after a lifetime of rejection in my previous schools before high school) and I was finally able to blossom and thrive in an atmosphere of total acceptance. I would want other deserving special needs students to have a (financial) chance to go to such a great, academically rigorous school like I was given the chance. Thus I would want a scholarship endowment set up in my memory there (as well as funding for the arts and music there).
4) Lakewood Park Baptist Church, Auburn, IN
--my spiritual home since childhood.
5) Children's Craniofacial Association, Dallas, TX
--the large national support group for families of children with craniofacial anomalies. I belong to it, and have attended many of their Cher's Annual Family Retreats, where many people have gotten to know me. (I bet you didn't know that the singer, Cher, herself, is the honorary chairperson of that group, did you? I've met her many times personally!)
That's just a summary of my funeral desires. Hopefully I have a good long time left--but when God feels I'm ready to go home, I need to be ready for that too.
However long I live, I want to be remembered for making the lemons of my life (my craniofacial deformities) into lemonade, and living my life with gusto!
I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)