Monday, June 16, 2014

Extraordinaries: Quiet Heroes

note: this was written and intended to publish yesterday, so there may be one further tweek post publish.

Today is father's day. 

For many, this is a wonderful day in which they celebrate the father figures in their lives -- past or present. Some get to spend it with their dads, others have step parents that filled in the gap where their birth parent opted to step back and live a life separate from the family they thought they wanted.

And still others? They are like me. Their father is there -- sort of -- and loved dearly (or for some, maybe not). But the truth is that they are indeed still missing. While I love my own dad, I only know him because I am very much like him -- outspoken, a lover of language and a capacity for knowledge that boarders on frightening. He and I share the passionate desire for conversation only later to shun the spoken word in exchange for written language found in books; savoring this time all alone.

I am blessed to have two constant father figures that have been part of my life for several years -- one who was my pediatrician during the most turbulent of my past eating disorder behaviors, and the other is a mentor of mine who fell into my life by accident. Without these two men, I would have no clue of the importance of a male figure in a child's life.

I wouldn't know what a hero was.

Father's Day can be seen as a day of appreciation for the heroes in one's life for still others who have had absolutely no one to look up to in their whole lives that resembled a father figure. And today I want to share with you the quiet heroes in my life.


When I was diagnosed with the very beginning of my health problems in childhood, the only thing I expected was to live a life that wasn't as fulfilling as that of my friends. I later came to discover that because those in my life didn't understand what is was like to have a chronic illness, it wasn't as noticeable when I wasn't around. After awhile, many never even noticed my attendance or absence from school and extracurricular activities.

And before long...I stopped being invited to social functions. It seems that my presence just wasn't altogether very remarkable.

When I was 18 I was placed in a children's home. Most there were in the foster system, and at the time I lived there I roomed with one truant, the only kid there whose parents were paying for her to be there as they worked through their own burden's first alone, and later together.

This organization is called Coyote Hill Children's Home

The video I most loved is here. I must admit I am quite partial, as in the second video three out of the four kids featured I got to live with in the same house. The two younger children I became very attached to, partly because I've been a "big sister" all but sixteen months of my life (before my brother Philip was born). Tiffany, the girl in the video, was one that I admired most among us. She knew what she wanted and worked for it. She tore a ligament in her knee and had to have surgery and took it better than most adults that I have now come to meet...and just a few months prior to that surgery she also had to battle mono. She did this all with grace.

My house parents -- Amy and Jacob -- weren't much older than I was. At first it was weird for all involved, but at the time I was pretty atypical for my age as far as emotional development. I had high anxiety levels, and these two took on the task of learning how to work with someone who had been battling a severe eating disorder for many years with limited recovery time. Out of sheer desire to help me, they talked to my treatment professionals, learned about anorexia nervosa and all of the quirks and insanity involved in addition to dividing their energies amongst five (at that time) other kids in the home. It was with them I learned -- cautiously -- how to trust other people after knowing them for fewer than five years (or longer). Even after leaving, we have stayed in contact, and they have continued to be here for me in the roughest of times.

Out of this particular adventure, there was one other boy closer to my age. At the time Michael was 17 years old and had all but moved out of Coyote Hill. We had some entertaining moments, like when I was attempting how to learn to drive -- with his very nice car -- and I slammed the accelerator instead of finding the break pedal (don't worry Michael, I never did learn to I never got the chance to almost crash anyone else's vehicle). After both of us had left for some time, we reconnected with Facebook. While catching up, he told me of a website he started: a website for those who had been in the foster system and wanted a sense of community that didn't used to exist.

Michael's website is known as I'm A Foster

I'm A Foster

I'm A Foster has become one of my favorite websites simply for the bravery woven into each person's story. The foster system indeed needs to be over hauled as I have seen too many children and primarily young adults lost in the system. Some contents may rock your boat as to your ideas of what all the foster system entails...and I'm sure anyone who is part of the system (children, foster parents, social workers, etc) could share with you parts of their own experiences that would keep you awake for days. 

But there is a silver lining...this site's contents are proof.

When I was 19 years old I headed out on my own. It was that time in every child's life when it's just time to leave the nest...and for me that was shortly after I came back from Coyote Hill. I left the children's home just long enough to receive the gastroparesis diagnosis and surgical tubes. From there I decided it would be a *fantastic* idea to move in with perfect strangers.

It was probably one of the best choices I ever made. Going only by instincts and a faith that God would never allow me fall to truly fall, I joined a rambunctious family of six, and I made number seven. Through this family that gave of themselves so freely I was given a unique opportunity to learn all about homeschooling done correctly, that messes are fine to make since they can always be cleaned up, and that sometimes the most memorable of life's lessons are learned from the words spoken to you by a child. 

I will never forget, one day on the rail of the daybed I was sleeping on -- in stickered letters -- a message spelled out for me:

"Danielle Is So Loved"

It was through this family I was introduced to many more remarkable people.

One of them is my friend Barb, who got my foot in the door of volunteering in the area of mental health. Thanks to Barb I got to meet and several others. I got to be part of something larger than myself for the first time in my life -- at that point the age of 21. We navigated a youth led and oriented advocacy group. While the fledgling group didn't get too far off the ground due to funding and red tape, this was the very first time I realized I actually do have redeemable qualities.

I also connected with a couple who have three boys, the eldest being my age. James and Patricia have been a steadfast source of intellectual and spiritual nourishment that I do not believe exist elsewhere. This is a couple that have gone through some harsh times only to come out the other side with valuable insight as to how our fellow man reacts or receives the actual words and message of God...within the church itself. At first I did a lot of listening with my own limited ability to connect dots, followed by a period where I actually refused their help. But they patiently waited for me, much like the father waited for the prodigal son -- and they even welcomed my return in the manner I felt similar to the prodigal's reception. There was no animal slaughter, but the genuinely happy tones that match their words upon my  phone calls, to me, is just as good.

This blog would not exist had it not been for Barb, James and Patricia, and the Palmeris. I never would have had the guts to write about many of the topics I choose to take on in the areas of mental health and no grasp for my own faith...and I never would have developed an ability to learn from my mistakes had it not been for learning defeat from the youth advocacy group, the falling away from the few who had the patience to deal with my increasingly chaotic life, and having to say and mean the phrase "I'm sorry".

This blog also wouldn't have found space on Google if not for my friend Carissa. She's my age and the one who started up G-PACT (Gastroparesis Patient Association  for Cures and Treatments)

Carissa herself is very busy. While I don't have the privilege of being super close to her, I've gotten to really love her spirit and who she is. She is a true warrior through and through, taking obstacles as they come and in doing so gives so much back. Thanks to her and several others who also serve as volunteers there are support groups on Facebook available, the term "Digestive Tract Paralysis (DTP)" -- which has been adopted by motility professionals -- and the ever growing popularity of wearing "Green for DTP" every Friday.

One of my quiet heroes is only four years old.

 Raya is one of those children that never cease to surprise in both body and spirit. While Raya's medical condition is very complex and ranges from unpredictable motility to food allergies and intolerances that leave many professionals bug-eyed, there is a strength to her that is unmatched by even that of some adults I have met. As you can probably see in the photos included in her blog, she has a personality that will win you over in a manner of seconds. She's been through so much including multiple in hospital visits, countless tests that are both invasive as well as non invasive -- she had an NG tube in her nose for most of her first year of life, has undergone numerous scopes, motility testing, G tube complications (and G/J tube Fubar), impedence study (yeah...not fun at all), and many other difficult events that would earn many a one way ticket to the crazy house. Yet she shines in her preschool class, makes many developmental strides in occupational therapy for her sensory processing disorder (take it from me...this is a big deal), and has overcome a very pervasive oral aversion. Despite her many digestive challanges, there is an inner strength in her -- alongside supportive family and a mother who is generous enough to share this inspiring life with her blog "Feeding Raya" -- that allows her to still make strides in eating orally.

I have met so many in my age group that threw their their proverbial fork across the room a long time ago with less going on than this bright, sassy red headed child.

Last but not least...the fellow spoonie who inspired today's post.

Tori made this video yesterday, and today on Facebook she tagged me when she shared online. I'm glad she did, because I had been very down for the last few days and feeling rather lonely. I knew that my own feelings were just that -- feelings. They never last forever.

But today, Tori gave me a very special gift. Today Tori gave me some of her Hope with some Courage and Honesty mixed within. In her video, you don't have to know her personally to really understand the strength that she exemplifies. But if you do know her, and she counts you as a friend, it will move you to tears. 

It was something so desperately needed! I'd spilled so many of my own this week, with old thoughts haunting me: the uninvited whisper softly touching my heart with a message that I was not wanted, nor would I be missed. That I had nothing at all to offer. While I routinely write here that I know full well that these notions are not else would I know how it felt to have the idea of being a person who is disposable?

Because that's where I used to exist...

While I felt that I had shaken the last of these thoughts, her video quelshed whatever there was left, and instead left her sweet message, punctuated with quotes from the century's best thinkers and most gifted writers.

And that is something that I personally have great appreciation for.

In her video, Tori says:

"As long as I could make a positive impact on just one person, my life would be worth it".

This single sentence sent shivers down my spine...because this is why this blog will not stop until I do. It's the only thing I have promised myself, because whoever gives hope gets order to send it out again into the world, to any soul starved of encouragement.

Hope is free, but not aways very easy to find.

After watching her video, I messaged Tori asking permission to use it in this blog post. Her message gave me something to write about, something that had felt vacant lately. Tori and I have not talked at great length...but I think that may change.

For a long time now she has been one of many I am blessed to know that gives great support.

And today, in my own flow of the use of language, she is the one who gave me the term "Quiet Hero".

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