Monday, January 19, 2015

Meet the Board

Mondays here at GHF are usually "Meet the Bees" or "Bee-ography" Mondays... today, since we have made a commitment this year to go back to the beginning of who GHF is and where we came from, we are giving you the opportunity to meet the board of directors for this mission - one at a time, over the next week or two.

 

Meet Alicia "Ali" Harper, Founder & President/Chief Executive Officer of Brayden Alexander Global Foundation for Hydranencephaly, Inc. (that's me, actually - yes, I'm the primary author of Journey of the Bees and I'm only telling you since I am not a huge fan of talking about myself!).

I would add some photos to this post, but the first thing I will tell you about myself is that I'm not the most tech-savvy individual and GHF just moved their blog from Blogger to WordPress *grumble*. It's not going so smoothly, but it's hopefully just an adjustment period and we will be well on our way to regular posts and blog expansion very soon!!

The second thing I will tell you about myself is that I write - alot. I find it therapeutic and I love it. So, this is going to be long. *you've been warned* But it's also going to be real - very.

So, who am I?

I grew up in a teeny, tiny little bitty town with an even teenier little school (kindergarten through 12th grade and less than 30 - yes, THIRTY - people in my graduating class) called Laquey in Missouri - just outside of Fort Leonard Wood (aka Fort Lost in the Woods for you Army folks that have been through there).

Yeah, I'm going WAY back.

Before all that, I was actually myself born with a rare congenital condition called gastroschisis. My own parents were given a grim prognosis for my life and fortunately, never gave up on me. I've never had any further complications from that birth defect and have lived a pretty odd-defying life myself - I guess?! I have never really thought about it until the past year when I connected with some other survivors of the condition (there ARE other "survivors" - I just thought I was alone. seriously!)

Anyways, school was rough - I was bullied pretty mercilessly for a greater chunk of 3rd until 12th grade. I didn't grow up with a the luxury of the usual family dynamics, but there was definitely a lot of love. I am so very thankful for those experiences, as cliche as it sounds, because it definitely shaped me into being a much better person as an adult - but not before learning lots of lessons on my own through mistakes made. I graduated from that teensy weensy little school, with HONORS  mind you, in 1997. A few unexpected circumstances landed me in the university extension instead of the 6-year medical school program or music major at another college I had hoped for. I worked my tush off in the restaurant business, working from the bottom as a hostess/cashier to manager in a couple of years. I loved learning the business and learning about people along the way.

Flash forward a while to 2007 when I found myself a single parent to two little girls, ages 2 & 5, now working 60+ hours per week in corporate restaurant management and struggling to keep my emotions in check to get through each struggle that was presented to me - and there were several dozen that I could rattle off to you, but will instead spare you the boring details. 2007 is when I first met my husband, now step-dad to those two girls, daddy to his son Seth and our little angel-man Brayden Alexander.

That little guy Brayden was not planned and actually presented himself in to our lives at one of the most seemingly inconvenient of times - but just at the right time, really. We had only been dating for not even a year and dad was heading off to boot camp for the Navy about 6 weeks after we discovered  his existence. I'm not going to lie, abortion was considered for several reasons in the beginning - but fortunately, weighed against. It just so happened that my sweet little niece, Zoey Mackenzie so very anticipated and very much loved, was born sleeping the day that I found out the extremity of Brayden's brain abnormality. I had only known that I was pregnant for approximately a week (the details are a little cloudy) and was devastated to hear the news. I knew that this new little life was not mine to choose opportunity for - regardless of the circumstances I was in, or the prognosis he was carrying. Despite a long, tumultuous pregnancy - one that was filled with countless battles with pessimistic doctors and unsupportive care providers - he made his debut ahead of his scheduled c-section appointment on June 30, 2008.

During my pregnancy with Brayden, several possibilities for formal diagnosis were tossed around but the only thing for sure was that he had severe hydrocephalus (the accumulation of cerebrospinal fluid within his brain). Beyond that, we only knew that he had a terminal brain abnormality. He wasn't expected to survive to term. When he did that, he wasn't expected to survive hours after birth. When he did that, he wasn't supposed to survive many days. Then many weeks, or months, and certainly not years. *I'm sure you get the point* You can read about the 4 years, 4 months, and 15 days we were fortunate to have him in our lives here on earth by visiting his CaringBridge page. You can also read his "Bee-ography" HERE on the Journey of the Bees blog.

It was in 2010, after the thick fog had lifted that had settled pretty heavily in to our lives upon first hearing the diagnosis of HYDRANENCEPHALY, that I started thinking about starting a nonprofit. I had been blogging and battling internet trolls, which are people who hide behind computer keyboards and verbally attack individuals through typed text to make themselves feel better, while finding a way to offer myself support. I had become fairly disconnected from the only online support group that existed at the time, I believe because I chose to be proactive with Brayden's life and found myself heavily criticized and a regular recipient of hate email. Blogging and writing had proven to be great therapy. I had researched out the entire internet, seriously. I knew I wasn't the only one - so I started a support group on Facebook. Everyone else was doing it, so it seemed like the right thing.

The bonds created through that support group, which is still a huge part of my family today - 5 years later, are immeasurable by any method. If you have a child with a diagnosis of hydranencephaly in your life - one that you are heavily involved in - please join our Family-to-Family Resource Network (F2F) on Facebook by connecting to my personal page HERE.

But the sadness that enveloped my whole-being when a child grew their little angel wings was a reminder to where our lives would be one day. I knew that I wanted to create something that would live long after Brayden did; something that would carry his name. I chatted with the husband and found a mass amount of support. I chatted with a long list of other individuals in my life, who mostly thought I was crazy or never had any intention of actually doing it. But then I found a few people who believed in the idea, the idea that became a mission - and Brayden Alexander Global Foundation for Hydranencephaly was incorporated as a nonprofit entity on June 14, 2011.

I have business experience, which has helped me immensely on this nonprofit venture. I had special needs experience with children - I loved children, my own... others... especially those who needed extra attention for whatever reason. But nothing could prepare me for the rollercoaster ride that has been my life since embarking on this journey with a diagnosis of hydranencephaly in our lives.

Brayden unexpectedly grew his own pair of little angel wings on November 15, 2012 after failed attempts by myself and emergency personnel to resuscitate via CPR and other emergency interventions. Global Hydranencephaly Foundation, the business name we use for our mission, is continuing to shine his bright light on the world - it has not gone out once since the moment it began, even after he had gone. It has not always been easy, in fact it has mostly been hard, and frustrating, and incredibly discouraging at times - but it has been worth every second of heartache, setbacks, and challenges to our level of determination.

Our family has moved several times - as a Navy family - and we are now settled in the Greater Seattle area of Washington... where we hope to stay. Forever even. Brayden only lived here with us for one month, but I feel like he brought us here for a reason. I now work as a paraeducator in the classroom with the teacher he had for a little over a week after we moved here - an opportunity that I was at first hesitant to accept, but so thankful that I was given. Our family is heavily involved in the special needs community; advocating for equality in healthcare and continuity of care for military families, as well as special projects (like the addition of an accessible playground in our community with our friends at Bremerton Beyond Accessible Play who even included a "bee" in their construction - in honor of the original "B"). I'm also sharing my passion for empowering individuals with the tools necessary to navigate through Navy life efficiently in a volunteer capacity as the command-appointed ombudsman for my husband's submarine command.

I'm terrible at accepting compliments. I hate to be in the spotlight or to talk about myself. I will never take any credit for anything that this nonprofit accomplishes, because there are a large amount of families that have (and continue) to make this mission truly successful. I have a heavy passion for this mission, but it's not one that I do alone - thanks to some pretty, amazing, committed, equally passionate volunteers. I have, however, accepted a nomination last week in the 2015 Military Spouse of the Year awards sponsored by Armed Forces Insurance. While hesitant at first, I realize that this is an amazing opportunity to shine a greater light on the projects and passions I am involved in - Global Hydranencephaly Foundation being the top of that list. *prepare for shameless plug* Please vote on Wednesday, January 21, for me to survive the first round of selections and help me to step out of my comfort zone to bring a greater light to our efforts.

And please continue to support GHF as they navigate through the nonprofit trenches to success in achieving their mission of  providing individualized support resources to families facing a diagnosis of hydranencephaly for their child, anywhere on the globe.

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