Sunday, January 25, 2015
we could use yours!
For the second year in a row, Global Hydranencephaly Foundation has received three nominations in the WEGO Health Activist Awards. This year's nominations are:
Best Team Performance
Best in Show: Facebook
Best in Show: Community Forum
Head on over and endorse us to "vote" by clicking HERE.
Tuesday, January 20, 2015
Annie Hopkins founded 3E Love to make the world a better place, also creating the International Symbol of Acceptance, which shows a wheelchair in the shape of a heart. Together, the occasion and the symbol communicate the 3E Love ethos of devotion, equality, respect and understanding, to be adopted and appreciated by people of all abilities.
Disability owned and operated, 3E Love works to empower people through pride and passion, rather than charity. Taking control, following our dreams and being the best we can, regardless of physical factors, makes us what we are, and Annie’s goal to share this with as many people as possible has proved a source of inspiration all across the world.
On January 20th 2009, Annie passed away due to unexpected complications during a simple medical procedure. Her memory lives on in the hearts of her friends and family, and it also lives on in the heart of the International Symbol of Acceptance. Annie’s brother, Stevie Hopkins, who helped her start 3E Love, paid tribute to his sister’s selfless efforts and vowed to keep them alive. On the first anniversary of Annie’s passing, Stevie and family founded an annual celebration of her life and work, inviting everyone to take part in a variety of ways, from drawing the symbol on your hand or cheek, to ordering buttons and T-shirts from the website, or simply changing your social media profile pictures to the logo for the day.
To quote 3E Love: “Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.”
From one of our Bee-Keepers:
"Everyday people stare at Haydin, won't let their children play with or talk to Haydin or rudely make comments about his disability. Haydin is so much more than his disability, he's a happy, silly, loving 5 year old boy whose body doesn't work the way many others do. On the outside you may see him as a kid in a wheelchair who knows nothing but if you get to know him you see he's so smart and aware and wants nothing more than to be heard and understood. I'm in this movement so hopefully one day my child won't be judged baised on a general diagnosis and will be judged on the person he is."
Why is the International Day of Acceptance important to you?? Tell us in the comments here or on our Facebook page!
Monday, January 19, 2015
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.
Sunday, January 11, 2015
"I, like most others dread checking the mail because of the fact, most often, we stand there only to find bills, denials of equipment, explanation of benefits or a Postman “oopsie” - a nice looking, sparkly stickered, hand addressed piece of mail addressed to one of our neighbors.
Turn that frown upside down!
Here is your chance to get that special hand addressed letter delivered to the correct address, your mailbox! It’s your chance to smile and give a smile to a fellow Hydran family when checking the dreaded mailbox. “Let’s BEE Pals” is a six month Hydran family pen pal program. Your family will be randomly paired with a Hydran or Hydran Angel family to exchange letters, small packages or simply just a friendly “hello”. This is a program designed to share encouragement and build relationships with our BEEs and BEE Angel families through a more personable experience rather than just the daily Facebook posts or emails.
We would like to especially extend encouragement for our Hydran Angel families to participate. Being the parent of an Angel BEE myself, Joey’s Mom, I know we have the uplifting of good days and the most downward of bad days. We have been through the best and worst parts of being a parent/family member to a Hydran BEE. With everything we have experienced we need to show our love and support to our BEEs and BEEkeepers. We know best, the amount of love and encouragement each Hydran BEE and Hydran Angel family needs to make it through each day.
In order for the “Let’s BEE Pals” program to run smoothly there are a few friendly rules and requirements that will need to be followed:
• 6 Month commitment (February 2015-July 2015)
• MININUM of one letter a month sent via “snail mail”, mail sent through the Postal Service (Emails, Facebook messages, Skype or Face Time may be used in addition to your once a month “snail mail” letter)
• $10 maximum spending limit if you choose to send a gift (no cost/handmade gifts are encouraged)
• If you find you are no longer able to keep your commitment, please email the BEE Pals Coordinator
• If you do not receive a letter and it has been 60 days or more, please
Email the BEE Pals Coordinator (Please keep in mind we have many Hydran families located internationally)
If you have any questions or concerns along the way, please do not hesitate to contact the “Let’s BEE Pals” Coordinator, Jamie Brown firstname.lastname@example.org or the Global Hydranencephaly President, Alicia Harper email@example.com at any time.
If you are as excited as I am and want to become a BEE Pal please email your name, BEE or BEE Angel’s name, address and any other forms of contact you would like to include. Please email to the “Let’s BEE Pals” Coordinator, firstname.lastname@example.org, no later than January 31, 2015."
We hope you ALL will sign up to participate in this fun program introduced to help build the bonds between our families and offer support on a different level beyond the great wide web.
Wednesday, January 7, 2015
"You smile, laugh, grin and dance lightly through life, taking the sadness and sorrowful things and hurts that happen into your being; while balancing them with the positive, good things that life offers. Life, itself. Blue skies; dancing daffodils; whippoorwills; whiffs of fresh bread baking in the oven; a welcome hug; offering of peace and prayer...all the natural highs.”"
– from a 1992 letter by Joan White
The following was published in January 2011, the 30th anniversary of JoyGerm Limited.
Joan White germinates JOY for Three Decades
Syracuse, NY — Joan White sits at her kitchen table, in her home in the Sedgwick neighborhood, and thinks good thoughts. They come easily. Jan. 8 was the 30th anniversary of Joygerm Limited, the national movement founded by the woman of the house.
Today, she says, there are “more than 117,000 Joygerm unfurled all over the world.” Joan exudes a powerful surge of positive thinking.
“They’re my extended family. What a vast assemblage of amazing people. How blessed I am.”
The idea is simple: Smile.And pass it on.
Joygerms is pretty much of a one-woman operation, run out of her home by an organizer who never seems to run dry of puns, or poems. The house is decorated with sayings and slogans. Likewise her answering machine. I notice one written in a big bowl that sits at the center of the table: “Life is a glorious banquet, a limitless and delicious buffet.” That’s from poet Maya Angelou.
Joan is in “refirement” not “retirement” from a career in advertising and public relations. (Remember “Joan of Art?”) For 15 years, she was an associate and pal of Bud Coolican, the legendary ad man of Syracuse who invented all those catchy advertising jingles that used to dominate Syracuse radio stations (J.P. Byrne, Onondaga Savings Bank). At Bud’s death, she struck out on her own, working mostly from the home she shares with her sister, Bev. Her long-time clients included the Ice Capades show, and the Shrine Circus.
Joan is 77 and very much at ease in her skin.
When I ask her to explain how Joygerms came to be, she goes back to Jan. 8, 1981, a day that happened to be her mother Nora’s birthday. (Nora died in 1965). She says she felt the vibrations of Nora’s energy working through her as she read a newspaper story about a couple in California who were offering to “worry for you ... for a fee.”
[caption id="" align="alignleft" width="380" class=" "] Peter Chen / The Post-Standard"Joygerm" Joan White dances with Toni "Tippi" DeJohn in 1996 while spreading the joygerm and entertaining the residents at Syracuse Home Assocation on Sorrell Hill, a senior citizen home in Baldwinsville.[/caption]
Joan turned the scheme inside out and invented Joygerms. She’s not exactly sure where the name came from, although the phrase “Come and spread your joygerms” did appear in a piece of copy she wrote for a client, the Sherwood Inn in Skaneateles. She says innkeeper Bill Eberhardt suggested Joan remove the mention of joygerms. She took it for her own and well, now she says, looking back, “Who would have thunk it?”
It’s a big reach, across 30 years, and a little amazing, when we consider there are followers all over the United States (“in all the states,” Joan says proudly) and several foreign countries, including Ireland and England and on the African continent.
Joan keeps in touch with Joygerms in a seasonal newsletter (“Infectionately Yours” printed on yellow paper) and lots of cards, letters and phone calls. She’s done parades (no politicians allowed), speeches to Rotary, etc., and tons of appearances at nursing homes and senior centers in the area. There is a mascot, named J.J., created by Hazel Cushman. The figure oddly resembles the Syracuse University sports mascot, Otto the Orange, that came along later.
She’s done lots of radio and TV interviews and was featured in Family Circle magazine and Chase’s calendar of events. She held up a Joygerm T-shirt when Phil Donahue broadcast his popular TV show from Syracuse. There are membership cards (designed by Arlene Michelson), Joygerm H.U.G. Bug coupons and a Joygerm jingle, by Richard Simiele, a retired music teacher. Joan has a nifty “Choose Joy” print Richard gave her. Every February, Betts branch library (South Salina Street) displays a Joygerm quilt created by Eileen Taylor of Salem, Ore. in 1987.
“It just snowballed,” Joan explains of the movement, adding quickly “without melting. I’m just the instrument.”
Books are an important part of Joan’s life, going back to her days in the book room at Assumption School.
“I’m on a continuous roll of reading,” she says, noting that she gets up most mornings and sits reading in a small room off of her bedroom. She calls the space her “Joygermitage.” It’s where “I rest my mind and tune my heart,” she explains.
Hers is what Joan calls a “contemplative house.” The noise level is low and the sun streams in through the windows. “I can look out the windows and see the sun on the snow,” she says. “It’s wonderful.”
Among her current reads are a 50-year-old book by a Redemptorist priest and Sue Monk Kidd, author of “The Secret Life of Bees” and “Traveling With Pomegranates.”
Joan is a strong believer in self-motivation and “responding creatively to the gifts you have.” As well as patience. “You can’t pull a butterfly out of a crystalis until it’s time,” she explains.
Religion takes a significant place in Joan’s life. She is a practicing Roman Catholic who “accepts the wisdom of other religions.” She visits monasteries and abbeys in Upstate
“My faith is all,” she explains. “It keeps me going.”
Words to smile by
“There’s a fun side of Joygerms, too. You smile, laugh, grin and dance lightly through life, taking the sadness and sorrowful things and hurts that happen into your being; while balancing them with the positive, good things that life offers. Life, itself. Blue skies; dancing daffodils; whippoorwills; whiffs of fresh bread baking in the oven; a welcome hug; offering of peace and prayer...all the natural highs.”
– from a 1992 letter by Joan White
Tuesday, January 6, 2015
A huge challenge to the families we represent who have a child with hydranencephaly, as well as families across the nation who face challenges with a loved one who has a complex medical need, is in the area of finances.
Who DOESN'T have to face difficulties when it comes to finances - right?? Well, some of you may be independently wealthy... but for the larger majority, no such luck!
Imagine being a parent that wants to provide their child with the best quality of life possible, being limited to the future that they can provide because they cannot save for that future without risking the loss of services and resources that provide a quality of life for their child - for their family.
Thank you President Obama, for signing the following in to action:
With his signature, the president has paved the way for people with disabilities to open tax-free savings accounts where they can amass more than $2,000 without losing government benefits.
President Barack Obama signed the Achieving a Better Life Experience, or ABLE, Act Friday before leaving Washington for the holidays.
The new law will allow people with disabilities to open special accounts where they can save up to $100,000 without risking eligibility for Social Security and other government programs. What’s more, individuals can keep their Medicaid coverage no matter how much money is accrued in an ABLE account.
Modeled after 529 college savings plans, interest earned on savings will be tax-free. Funds accrued in the accounts can be used to pay for education, health care, transportation, housing and other expenses.
To be eligible, individuals must have a condition that occurred before age 26 and each person may only open one ABLE account. Under current gift-tax limitations, as much as $14,000 could be deposited annually.
People with disabilities may be able to start opening ABLE accounts as soon as 2015. However, some hurdles remain. While the new law alters federal rules to allow for ABLE accounts, each state must now put regulations in place — much as they have done for other types of 529 plans — so that financial institutions can make the new offering available.
“We can’t mandate that a state will create a 529, but given the lobby that we’ve seen, I think by the end of next year, I think we’ll see this in every state,” Sen. Richard Burr, R-N.C., one of the measure’s chief sponsors, said on a recent call with reporters.
The law’s name was amended in recent weeks to honor Stephen Beck, Jr., a longtime proponent of the bill who died unexpectedly in early December.
Sunday, January 4, 2015
Mondays are either:
Bee-ography Mondays, where we share the story of a bee from the perspective of their loved ones - along with photos. (biography = BEEOGRAPHY when we're talking about the bees).
[caption id="attachment_655" align="aligncenter" width="419"] We want to share YOUR bee's story with our audience... there is no better way to raise awareness & enlightenment, than through the real-life journeys of our bees![/caption]
Or, for those that are not up to writing an extensive story, you can share your bee via a Meet the Bees collage as well!
to bee-inspired, check out these Bee-ography submissions from the past few years:
Sophia in Chile
Malcolm in Washington state
Peyton in Alabama
Or you can go HERE to find links to ALL of our original submissions & learn more about how you can have your child's story shared. Hope to share your bee-ography or Meet the Bees collage soon!
Friday, January 2, 2015
or after life has moved on beyond this earth...
"Somebody should tell us, right at the start of our lives, that we are dying.
Then we might live life to the limit, every minute of every day.
Do it! I say.
Whatever you want to do, do it now!
There are only so many tomorrows."
~Pope Paul VI, Italian Pope (1897 - 1978)
Thursday, January 1, 2015
New Year = Fresh Start
ok, so we don't need to start over - but oh my, have we grown! We definitely need to freshen up a bit.
So, to do that - I resolve to:
- read , write, and research more - as I found myself disheartened by struggles and challenges in several areas of my own life the past year, I found myself giving up on learning more and sharing even more. There were actually times when I found myself asking, "What's the point?" Writing more will also equal progress on my book, that hasn't been touched in almost 2 years, and lead me here to blog more. Writing is my passion & our original blog is how this mission came in to existence. Writing has always been therapy for me and my world has suffered by not indulging in that therapy. The end of 2014 has definitely come full-circle while I found myself following my heart to where it belongs in writing.
One book I did read led me to this:
"Writing isn't about making money, getting famous, getting dates, getting laid, or making friends. In the end it's about enriching the lives of those who will read your work, and enriching your own life as well. It's about getting up, getting well, and getting over. Getting happy, okay? Getting happy. ...this book...is a permission slip: you can, you should, and if you're brave enough to start, you will. Writing is magic, as much the water of life as any other creative art. The water is free. So drink. Drink and be filled up.” ~Stephen King, On Writing: A Memoir of the Craft
- speak more - I have been relatively silent about the things that matter, the things that quite literally could mean life or death for the children we represent. I have been "secretly" strapping on the boxing gloves to debate in quiet little forums or comment threads on news articles with trolls hiding behind keyboards, but not standing up to the challenge in confronting the larger community. It was great practice, serving as a sad reminder of how many misconceptions continue to exist with a diagnosis of hydranencephaly. To truly make an impact-
"Our lives begin to end the day we become silent about the things that matter." ~Martin Luther King, Jr.
Not only that, but I have found myself not sharing as much and worrying over who else may be uncomfortable with what I may share or what stance I may have on particular subjects. Why? I'm not sure. It's time for me to remember if I do not speak up for what I believe in, especially in support of our mission, no one else will and too many little lives will be lost or lived at a level of quality far less than what is deserved. No more being quiet.
- stay encouraged - discouragement has been the greatest challenge for me personally in 2014 and I have finally overcome that challenge to realize that those moments of discouragement are not where I should give in or give up.
"Every great work, every great accomplishment, has been brought into manifestation through holding to the vision, and often just before the big achievement comes apparent failure and discouragement." – Florence Scovel Shenn
So, with that comes a freshen-up. This month we will be sharing who we are, where we came from, and where we intend to go; we hope you all will be joining us along the way. We have some really HUGE things coming in 2015 and you will want to be a part of it.
Speaking of "being a part" - we are always looking for volunteers, but that is especially true right now as we look to fill an immediate treasurer position on our Board of Directors. If you're interested, email President@HydranencephalyFoundation.org for an application! Hope to hear from you and looking forward to having you along for the ride through 2015...