Saturday, December 31, 2011

A New Beginning: 2012

"From small beginnings come great things."
~Proverb~


Welcome to a New Year! We have evolved as a nonprofit, still awaiting our 501c3 tax exempt status, and learned so much as we've worked to where we are now. We have amazing support and look forward to what exciting things are to come. Just to recap our progress:




“The beginning is the most important part of the work.”
~Plato~





In June, the 14th to be exact, our foundation was registered in the Commonwealth of Virginia as a not-for-profit corporation. We began work under our parent name, Brayden Alexander Global Foundation for Hydranencephaly, but have learned that this brought it's own complications and misconceptions... hence the new name of Global Hydranencephaly Foundation.


"We must always change, renew,
rejuvenate ourselves otherwise we harden."
~Johann Wolfgang von Goethe~



Though we have since adopted a "doing business as" name for ease of use, our mission remains the same:



"Through the Global Hydranencephaly Foundation, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles."


and our focus is on our families that we network. This blog is our means for doing so, for sharing the wonderful lives that our little "bees" live and work together at changing the many medically subjected misconceptions that exist in the world. Our goal is to involve our families with blog submissions and organization of events across the globe as we are able...

We have an amazing team of volunteers who work tirelessly behind the scenes to do research, graphic design, coding of the web sites, merchandising planning, organizing everything we have accomplished, and so much more. While we are fueled by the support of you all, I personally am fueled by the passion that exists in those who have done such amazing things to help a small dream become a growing reality... and of course the inspiration of one little man I get to be mommy to (read the tribute HERE).


“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” 
~Margaret Mead~


With the adoption of our new name came an amazing new look for our web sites, both our primary and our informational sites got a face-lift, and the debut of our first foundation newsletter. Those aforementioned volunteers have been organized in to committees for marketing, research, and merchandising to prepare for huge endeavors in the new year. Facebook proves to be a growing network of support and organization of our mission as well, primarily by means of our Hydranencephaly Family-to-Family Resource Network where families from across the globe are together in one virtual "room" to offer guidance, support, and information at a moment's notice. In addition we have our own Facebook page as well, where we have just announced our holiday photo contest winner and one of our newest additions to our network of amazing little bees, Ezhikel from the Philippines:



Our exposure does not stop there, you can not only find us on Twitter but have also launched our very own YouTube channel which will be one of our focus areas of the new year, full of opportunities to share in the joy our little ones bring to the ones who take the time to know them. 

We cannot fail to mention our line of awareness jewelry merchandise created by Sonya at Sonyarita Designs on Etsy. She does amazing work and is constantly creating new items to add to the store, be sure to follow her page on Facebook as well!

I hope you all will continue to support our foundation and help us to expand across the globe on to various platforms... we have some pretty wonderful plans in the coming months and we hope you stay in touch so as to not miss a thing! 

Feel free to contact any of us at any time should you have any questions, comments, or words of wisdom for us:

Ali, President
Heather, Vice President
Angela, Treasurer
Holly, Secretary
Sarah, Media Specialist
Jennifer, Family Liaison 



"When faith and hope fail, as they do sometimes, we must try charity, which is love in action. We must speculate no more on our duty, but simply do it. When we have done it, however blindly, perhaps Heaven will show us why."
~Dinah Maria Mulock~

Out With the Old...

"We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day." 

~Edith Lovejoy Pierce

2011 brought with it the incorporation of our foundation, with many lessons learned along the way. Our mission has remained the same, with some other changes along the way... the adoption of our new business name, Global Hydranenencephaly Foundation, for example. Stay tuned as we continue to grow in the new years to come...



In 2012, may we all find ourselves spending less time and energy on things with more time and energy on people. All of life's most treasured rewards will be yours... Thank you for your support and enjoy a happy, healthy, and rewarding new year!

Tuesday, December 20, 2011

Bee-lieve Campaign: Bee-worthy Share

As we near the end of the month, the end of our Bee-lieve campaign, and celebrate the holidays with our families... posts may be few and will likely be short. The video below has been circulating Facebook and I am in tears after finally watching it this morning... though this sweet boy has a different neuro-tube defect, Spina Bifida, his story is similar to that of our little ones living with hydranencephaly. 


"He will not survive to birth. If he does, he will not live long past birth."


"He will not _______(insert long list of life necessities here: i.e. breathe, eat)_________


"He will never recognize you, he will live in a vegetative state."


Those are the "facts" that exist in medical textbooks, what our professionals are told about hydranencephaly. Parents know these to exist as misconceptions, but what about the parents who have placed all of their trust in the professionals to make the best decisions for them and their children? Education & awareness is essential, so please take a moment to share our resources on the net:

our web site: http://www.hydranencephalyfoundation.org
our information site: http://www.hydranencephalyfoundation.info
our Facebook page: http://www.facebook.com/globalHYDRANENCEPHALYfoundation
our Family-to-Family Resource Network on Facebook: http://www.facebook.com/groups/hydran.families
Twitter: http://www.twitter.com/Hydranencephaly
YouTube: http://www.youtube.com/hydranencephalykidz

Here is Isaac's story, be sure to click on our music player at the bottom:


Watch More Christian Videos on GodVine.com

Saturday, December 17, 2011

Bee-lieve Campaign: A Force to Be Reckoned With

From Small Portion of a Life's Journey, originally published January 2011:

A Force to Be Reckoned With
By Alicia Harper

I've posted about this topic of strength before, how I don't feel strong yet I'm continuously told that I am. I don't see it. I feel as if I am only doing what any good parent would do in my circumstances...being a mommy and fighting for my baby, and for his rights as a child and not just the condition he has been diagnosed with. I'm only doing the same as every other parent faced with the same circumstances as my own, loving my baby and fighting to give him the best quality of life possible.

Brayden lives with hydranencephaly...he isn't THE hydranencephaly, and he isn't SUFFERING FROM hydranencephaly. But you know, regardless the condition or struggles our children face...that strength lies within and is ready to help with the fight even when we are tired of fighting! It exists, and we as parents...especially with extra special little ones...are full of strength.

"How often has it happened -- an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off, and maybe even feel a little condescended to. But you know what? They're right. You're strong. You're facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong. But appreciate that strength now. It makes you special. Capable. A force to be reckoned with."

~by Terri Mauro from Parenting Special Needs Children at About.com

Thursday, December 15, 2011

Bee-lieve Campaign: Alice & the Queen

If you know me personally, you know that one of my most favorite authors (one that I definitely quote often) is Paulo Coelho. I essentially stalk him on Facebook, his blog, Twitter, and any other social media platform he exists on... I love his writing and his positive stance on life and holding on to hope. 


Almost a year ago, he made the following post and I've ever since quoted Lewis Carroll as well:


Alice and the Queen
by PAULO COELHO on JANUARY 31, 2011



In Lewis Carroll’s famous masterpiece “Alice through the Looking Glass,” there is a dialogue between the main character and the Queen, who has just told something quite extraordinary.

- I can’t believe it – says Alice.

- Can’t believe it? – the Queen repeats with a sad look on her face. – Try again: take a deep breath, close your eyes, and believe.

Alice laughs:

- It’s no good trying. Only fools believe that impossible things can happen.

- I think what you need is a little training – answers the Queen. – When I was your age I would practice at least half an hour a day, right after breakfast, I tried very hard to imagine five or six unbelievable things that could cross my path, and today I see that most of the things I imagined have turned real, I even became a Queen because of that.

Life constantly asks us: “believe!” Believing that a miracle can happen at any moment is necessary not only for our happiness but also for our protection, or to justify our existence. In today’s world, many people think it is impossible to put an end to misery, to build a fair society, and to alleviate the religious tension that seems to grow worse every day.

Most people avoid the struggle for a whole variety of reasons: conformism, maturity, the sense of the ridiculous, the feeling of impotence. We see injustice being done to our neighbor and remain silent. “I’m not getting involved in fights for nothing” is the explanation.

This is a cowardly attitude. Whoever travels down a spiritual path carries an honor code to be fulfilled; the voice that is raised against what is wrong is always heard by God.

Being a parent to a child with a complex medical condition looks horribly intimidating from the outside, it really isn't. We simply believe in our children the same as any other parent does. We aren't necessarily believing that our children will overcome a diagnosis of hydranencephaly, but that they are here to live the life that was granted of them just the same as any other child. We aren't in denial or full of doubt, we simply believe that they are capable of a quality of life deserving of love and compassion from those they are surrounded by.

During this holiday season, regardless your affiliation with organized religion, I hope you all will learn to not only "Believe in the Impossible," but also to stand up for those beliefs when they're questioned. You'll be surprised by the blessings this small gesture can bring... when you simply open your heart and your mind, and believe in the things that otherwise may seem unbelievable.

Wednesday, December 14, 2011

Tuesday, December 13, 2011

Bee-lieve Campaign: Bee-ography

From bee-grandmother to Brailyn, Angela:


Angela Christner


Even before Brailyn's birth, my daughter was pushed to terminate the pregnancy by some. We were told that Brailyn more than likely would not survive birth and if she did she wouldn't live long, maybe 6 months at the most. 


Brailyn was born December 15, 2010. The doctors had no hope for her at all. Within the first 2 months, she had 7 surgeries. 


Brailyn was born with so many things wrong that needed fixed right away. One of the doctors told us that they could fix her TEF, they could fix her heart, etc. but we needed to understand that they could not fix her brain. She suggested that we take Brailyn home and let her die. Brailyn coded a few times. The last time she coded and they put her back on the ventilator, we were told that she could not live without life support as she did not have enough brain mass to sustain life. 


Brailyn's mom and dad (my daughter) struggled with whether to keep her on life support or to take her off. We called the pastor and he baptized Brailyn. On February 24, 2011, Brailyn was taken off the ventilator. We were told that she would live minutes to hours. February 26, 2011, we brought Brailyn home. They told us she may live a couple weeks. The hospital had contacted the funeral home etc. We were told that more than likely she wouldn't survive the 5 hour trip home. They sent her home on hospice. They would not give us oxygen or anything, they took her off all her meds including her seizure meds as they felt she wasn't going to live and said she didn't need any of the machines. 


After being home a couple weeks, Brailyn got really sick so I called her hospice nurse as Brailyn was struggling to breathe and turning blue. The nurse came to our home and I begged and pleaded for oxygen for Brailyn. I was told that since she was on hospice, Brailyn was to be kept comfortable not to prolong her life. We were refused oxygen and Brailyn was so sick. The nurse told me that Brailyn's heart and lungs were weak and that she had fluid in her lungs. The next morning, Brailyn was still here and struggling. I made some phone calls and told them I wanted antibiotics for her. They said no, that would prolong her life not make her comfortable. Well needless to say I wasn't happy so I told them they were murderers. If I were to let one of my kids lay there and not treat them, they would have me thrown in jail and take my child away from me. I said YOU are NOT going to let this baby die of pneumonia. 


Well, they didn't think I was handling things well and dealing with reality so they sent a social worker to talk to me. Again, I told them they were murderers!!! and they were going to treat this baby. They finally gave us antibiotics and Brailyn got well. 


We found a doctor at Childrens in Omaha who was willing to take Brailyn on so we took her off hospice and have not looked back. Brailyn is growing and is the light of my life. Why people think her life was not worth saving is beyond me. I give thanks to God, because He is the ultimate physician and He has great plans for this baby girl. She will be one in a couple of days and what a party we will have!! 
6-month birthday celebration!

Having Brailyn in my life has opened my eyes and my heart. I never had a clue what people with special needs children went through or the fight they were up against. All I can do is PRAISE GOD for allowing me to be this beautiful girl's grandma and for the chance to meet all of you wonderful people in the Family-to-Family Network. 



There is a song by Rascal Flatts called I Won't Let Go. The song says I will stand by you, I will help you thru when you've done all you can do and you can't cope. I will fight your fight. I promised God and Brailyn, that if He would let me keep her with me for a while, I would fight her fight and give her every chance she deserves in life. (to watch video, scroll down and click "stop" on our music player): 


I have no idea what God has in store for us, but I can say that because of Brailyn, my faith is strong no matter what. God is almighty and He does not make mistakes; therefore, all our children are PERFECT! They are just as God intended them to be. They are blessing and most importantly, they are HUMAN BEINGS!!! 


They told us that Brailyn would never feel pain or have or feel any emotion.... BULL!! She knows when she is happy, sad, hurt etc.... They told us all of this just before taking her off life support. They told us that she just didn't have the brain or the connection. They also told us she couldn't see, well surprise she does. They also told us she would be deaf, well wrong again. She has perfect hearing in her right ear!!!

Monday, December 12, 2011

Bee-lieve Campaign: The Santa Caper

This comes after two Santa visits in a matter of three days with Brayden, my amazing little 3-year old who just so happens to be living and loving life with hydranencephaly... 
This visit became nap-time after a long, adventurous wait and implantation in to a warm, cozy Santa lap.


This visit: Breakfast with Santa, in which Santa's beard was nearly Brayden's breakfast.




A visit to the jolly old soul when you're a kid is traumatic anyways, Brayden's sister Adysson will have a total emotional breakdown before she will ever actually sit on the wishing lap of the guy in the red suit. Add on a host of medical complications and it is that much more joyous an occasion, though stressful times a million for the parents. From our friend Dawn Villareal at One Place for Special Needs, I found this article:



Visiting Santa with your special needs child  
With a little pre-planning you can help your child have a memorable Santa experience!
by Dawn Villarreal, One Place for Special Needs


Where to go?
Each year more park districts and malls are offering a special Santa day for special needs kids. Check in with your state or local disability group. Many local groups or therapy centers will have a special Santa day or know someone who is organizing one in your area.


Ask questions
If you plan to visit a mall Santa, drop by on your own and ask the staff if they are handicapped accessible. Is the Santa familiar with special needs issues? Is there a time/day that is less crowded? Sometimes an elf may be a part-time teacher who knows how to work with special needs kids. It's worth it to ask the right questions.


When you can't leave the house
Some children are unable to leave the home to visit Santa. Two organizations are working to give these children a memorable Christmas Experience. Santa-America, founded in 2003, brings the highest quality Santas together across America to focus on a special mission: an unhurried visit by a loving, committed, trained Santa to families facing physical and emotional crisis. Santa-America is a member of the National Hospice and Palliative Care Organization (NHPCO) and Children's Hospice International (CHI).


Another organization is called RealSantas.com. Fill out a request form and RealSantas.com will do their best to contact Santas in your area who can make this a cherished moment for your child. They also take requests from wounded heroes and military families.


If you want to create a wonderfully personalized video from Santa for free, make sure you stop at Portable North Pole. Here you can answer questions about your child. This includes special efforts you would like to see your child improve upon, favorite things and a gift item he/she really wants. This clever Santa video seamlessly adds the information into Santa's talk to your child. If you download your child's photo or gift item, these are also included in Santa's book that he opens in the video.


Calming Santa fears
That strange looking man with the huge beard and red suit can be more than a little intimidating for children. Chances are if your child was afraid of Halloween, she will also be afraid of Santa. Knowing what to expect can go a long way toward calming those anxieties.


Santa America made a great video called What's Different about Santa? Santa helps prepare children for their visit by talking about his outfit and beard, how it might feel if you sit on his lap and why he wears his outfit. While this video was specifically designed for children on the autism spectrum, all children can benefit from this friendly video.


Please respect your child's fears and don't force her to sit with Santa. A child's anxieties will increase the longer she waits in line. It's better to leave the line and try again another year rather than having an anxiety meltdown in front of Santa and the hundreds of other families waiting for their turn.


Give Santa a note
Your local Santa will appreciate knowing how to communicate with your child. Give your child a more meaningful experience by prepping Santa ahead of time. When you are next in line, have a brief note to hand the "elf." She can easily pass that information along to Santa before your child sits with him.


Here is an example:


My child has a disability. It helps if you can ask questions with only yes or no answers. Johnny is 6 and likes Hot Wheels cars and Barney. He wants a Toy Story DVD and Hot Wheels race set.


Get a special needs Santa day in your community
Our children deserve to have the same experiences as other children. Call on your own to park districts and malls or organize with your local disability group. It is in their best interests to create a positive experience for all families.


Here are a few great Santa programs that you can use as examples:


Naperville park district - In this writer's hometown, the park district offers a special needs Santa night. The town has it's own Santa house, an outdoor structure with a waiting area and Santa's viewing room. Parents call the park district and a reserved time is given for the family. By having reservations, this drastically cuts down the wait time for Santa. An "elf" gives a parent a slip of paper to write any facts about the child.


The note is given to Santa. After he has read the information, the family is brought into Santa's private viewing room. Santa takes his time talking with the child in a quiet and relaxed atmosphere. The children do not feel rushed to leave.


This special night started as a single evening event after special needs families began asking for such a program and has now expanded to four evenings due to demand.


Sensitive Santa at Dayton Mall - Malls can make accommodations too.  In cooperation with the Dayton Ohio Chapter of the Autism Society, the Dayton Mall in Ohio has a sensitive friendly Santa day with lower lighting and quieter surroundings. This is promoted on both the chapter and mall websites so area families can learn about it.


Special Kids Day - Since 1990, local businesses, community organizations and a local college have combined forces to create a kids day for special needs children. Special Kids Day has evolved into its own not-for-profit organization and several kids days take place throughout the year. Many volunteers work to create a truly wonderful day with Santa, make crafts and get their photo taken. All of this is free for special needs families.





***Also, be sure to visit our new foundation Facebook page and vote for your favorite holiday photo contest photos... deadline is December 31 and the picture with the most "likes" will be awarded a $50 gift card to Amazon.com. 

Sunday, December 11, 2011

Bee-lieve Campaign: Our Candles Are Lit




Tonight at 7pm across the globe, candles will be lit in remembrance of those little lights who flickered out too soon during Compassionate Friends 15th Annual Worldwide Candle Lighting event. Sadly, it is impossible for me to list the many children who have touched our lives who will be remembered today... but those little loves are forever in our hearts.


Here is more about this event from their Web site:


The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor the memory of children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Now believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

The Worldwide Candle Lighting started in the United States in 1997 as a small Internet observance but has since swelled in numbers as word has spread throughout the world of the remembrance.

In 2010, information was submitted to TCF's national website on services in 15 countries outside the United States including more than 530 services, as this special day continues to grow. TCF has been joined in recent years by chapters of several organizations including MISS, MADD, Parents of Murdered Children, SIDS Network, Gilda's Club, and BPUSA and for several years services have been held in all 50 states plus Washington D.C. and Puerto Rico. There is no way to know how many hundreds of additional services open to the public are held in the U.S. and around the world each year without the information being sent to us.

The Compassionate Friends and allied organizations were joined in 2010 by local bereavement groups, churches, funeral homes, hospitals, hospices, children's gardens, schools, cemeteries, and community centers. Services have ranged in size from just a few people to nearly a thousand.

Every year you are invited to post a message in the Remembrance Book which will be available, during the event, at TCF's national website. Last year in that short one day span, nearly five thousand messages of love were received and posted from every U.S. state and Washington D.C., every territory, as well as dozens of other countries, with some posts in foreign languages.

Here in the United States, publicity about the event is widespread, being featured over the years in Dear Abby, Annie's Mailbox, Ann Landers column, Parade Magazine, Guideposts magazine, and literally hundreds of U.S. newspapers, dozens of television stations, and numerous websites and hundreds of personal blogs. Information on the Worldwide Candle Lighting and planned memorial candle lighting services (of which we are advised) is posted on TCF's national website every year as the event nears.

Saturday, December 10, 2011

Bee-lieve Campaign: A Plea, then Flashback Friday

This is partly a flashback post from the Small Portion of a Life's Journey blog & partly a recent plea. There is a baby girl in Texas with a diagnosis of hydranencephaly who needs a loving forever home. Last I heard she was due any day, so I'm unsure if this has changed. I know that it is an unbelievably difficult decision, adopting a child with a terminal condition, but if I could do it myself I would in a heartbeat. In fact, many adoptive parents have adopted multiple babies with hydranencencephaly and various other devastatingly debilitating conditions. The joys far outweigh the difficulties...

If you may be interested, or know of someone who may be, PLEASE email me for contact information at: ali_nichole0619@yahoo.com. 

Every baby deserves a loving family. I know that this diagnosis is presented horribly, it sounds so exhausting and stress-inducing. I know first hand, that it is not always. Our children bring more joy than you can ever imagine in a lifetime so short. Experience with hydranencephaly is not necessary... in fact I will network you with hundreds of people across the globe who can offer more support than you can ever expect to have.

Now to my post that did not publish last night... it likely helps to click on publish before closing the laptop and assuming it will do the work for you! Since it happens to coincide with my above plea, for you to please help us find an adoptive family for this sweet baby girl, I will simply combine them!

Disabled & Unadoptable? 
By Alicia Harper, Small Portion of a Life's Journey
March, 2010

Not only are there millions of children around the world who are awaiting a family to call their forever family, there are more who are facing the possibility that this wish may never come true for them. Oftentimes children born with difficult disabilities and serious levels of limited mobility and need for medical interventions, are left without a family or even a home. They are simply given up on, when they need a strong support system more than ever.


Another mommy from an online support group I have been a part of for a couple of years is an absolute hero to many children who are disabled and given a label of "unadoptable." Ann has adopted 50 boys, with another 7 coming to possibly join her family soon, both internationally and domestically and all with disabling conditions. Even their dog has a walker :) She chronicles her family's success at her blog:
All Our Boys

Her boys made a music video recently that she share with me, one that absolutely touched my heart... so I wanted to share it with you all (be sure to click stop on my music player at the bottom):



The boys did all of the music, lyrics, sound, themselves... The lyrics tell their stories, melts my heart and reiterates my belief that anything is possible!!


‎"Impossible is not a fact. Its an opinion."
~♥ Muhammad Ali

*and not one that I choose to hold... Believing in the "impossibilities" ♥

Thursday, December 8, 2011

BIG FOUNDATION NEWS

There is big news for the Foundation! Read the first ever edition of our quarterly newsletter for details! 


Also visit our website and our information site  for some exciting new changes. Details are in the newsletter!

Wednesday, December 7, 2011

Bee-lieve Campaign: Wordless Wednesday

Never walk? Natan Shai says otherwise !
“It’s kind of fun to do the impossible.” – Walt Disney

Monday, December 5, 2011

Bee-lieve Campaign: Happy Birthday Walt Disney!

"Our heritage and ideals, our code and standards -- the things we live by and teach our children -- are preserved or
diminished by how freely we exchange ideas and feelings."

~ Walt Disney, born on this day in 1901

Happy birthday Walt Disney on every December 5. By far the most world-renowned individual, the man behind Disney theme parks, movie creations, characters, and a vast line of merchandise; and being from Missouri myself, where Walt spent a majority of his young life, he is a local celebrity. 

As noted in a previous post, our little bees have celebrated many adventures in Walt Disney World theme parks; some courtesy of wish-granting organizations (find a complete list HERE), while others simply are annual family vacations or even just a weekend adventure. Focus on the importance of catering to all individuals, despite their limited mobility or special needs requests, makes Disney parks the most wished for destination.... the parks go above and beyond to live up to these expectations by making special families comfortable and ensuring their needs are met while enjoying the time of their life away from the chaos of lives. At Disney parks, the world of doctors, hospitals, and fear of the unknowns completely vanishes for a time and families are able to enjoy their selves away from the stress of the days. 

*All of the children pics scattered in this post were submitted from our family-to-family resource network of hydranencephaly families (thank you!).

Ethan with Mickey & Minnie

Disney offers guided information via their Guests with Disabilities Guide that is available on their site, which offers details on what services and capabilities are available to these special guests in accordance to this overview:


Walt Disney World Resort is committed to providing access to as many Guests as possible. Specific accommodations are made for mobility disabilities, hearing disabilities, visual disabilities and service animals.

MOBILITY DISABILITIES

Kateri

Walt Disney World Resort offers accommodations for Guests with mobility disabilities, including providing access to most attractions and offering rental wheelchairs and electric convenience vehicles (ECVs).

HEARING DISABILITIES

Assistive Listening systems, Reflective Captioning, Sign Language interpretation, Text Typewriter telephones, Handheld Captioning, Video Captioning and written aids are available to help Guests with hearing disabilities.

VISUAL DISABILITIES

Ethan & Aurora

Audio Description devices, Braille guidebooks and digital audio tours are available to help Guests with visual disabilities.

SERVICE ANIMALS

Trained service animals are welcome in most locations throughout Walt Disney World Resort; however, all service animals must remain on a leash or in a harness at all times and, please note, Cast Members are not permitted to handle service animals.

LIGHTING SENSITIVITIES

Brennan & Family, 2008

Should you or any member of your party have a photosensitivity or seizure disorder, we recommend that you check with your personal physician for specific instructions before visiting Walt Disney World Resort.

Show lighting effects, specialty lighting and other visual effects are used extensively. Lighting effects include strobe lights and other pulsating lighting effects, as well as:

Exterior building accents (e.g., strobe-like effects incorporated in outdoor signs)
Dance club lighting (e.g., mirror balls, flashing and spinning dance floor lights, among others)
Other attraction and show effects (e.g., simulated lightning, explosions and chaser lights)

Entertainment, events and performances are continuously changing and their show environments can vary throughout the day, making it impossible to list all possible lighting combinations. Therefore we are unable to give a definitive listing of strobe or lighting effects.

ROOMS FOR GUESTS WITH DISABILITIES

Walt Disney World Resort hotels rooms provide added comfort and certain services for Guests with unique needs. Rooms for Guests with disabilities may include:
  • Wheelchair-accessible bathrooms
  • Wheelchair-accessible ramps and elevators
  • Rooms designed for the hearing impaired
  • Rooms to accommodate service animals
Specific features and services vary depending on the selected Disney Resort hotel. Please review the room descriptions for more detailed information.

If traveling with a large party to assist someone with a disability, Disney Resort Hotels offer spacious rooms for 5 Guests or more.

Do you have a loved one with extra special needs? Have you spent an adventure at a Disney Theme Park with your special family? I would be thrilled to read your experiences in the comments below, thanks!!

Brennan & Family, 2008

And if you're planning to take a trip to one of the parks, or like us a Disney Cruise vacation, you can also get the ultimate source book for all things Disney PassPorter's Open Mouse:

PassPorter's Open Mouse for Walt Disney World and the Disney Cruise Line: Easy Access Vacations for Travelers with Extra Challenges

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Sunday, December 4, 2011

Bee-lieve Campaign: Remembrance

A share-worthy article that was in my inbox this morning... enjoy!


"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
~Khalil Gibran



— Three years, eight months and 20 days.

photo - Steven and Cindy Bergren pose for a portrait in 2009 with their son Levi who suffered from Hydranencephaly. Levi died Sept. 10, 2010 at age 3. <strong>SARAH PHIPPS - THE OKLAHOMAN</strong>
Steven and Cindy Bergren pose for a portrait in 2009 with their son Levi who suffered from Hydranencephaly. Levi died Sept. 10, 2010 at age 3. 


Numerous blessings were packed into the short life of Levi Bergren.


Many others have yet to be unwrapped.


That's the story behind Levi's Toy Drive an annual effort of his parents Steven and Cindy Bergren and others to gather new toys for children at The Children's Hospital at OU Medical Center.


Born Dec. 21, 2006 with hydranencephaly, the cerebral hemispheres of his brain were absent and replaced by sacs filled with cerebrospinal fluid. Levi's condition was terminal.


Their firstborn child would never crawl, play with Star Wars action figures or build Legos towers.


“We knew people wanted to give him gifts on his birthday so we said ‘Well, he doesn't need anything, let's help somebody else out,' Steven said.


That's why Cindy made a call to The Children's Hospital at OU Medical Center before Levi's first birthday.


She was told blankets would be nice. The Bergrens along with friends collected 264 blankets. The next year, the Bergrens were informed that toys would be good. They filled a minivan with toys. The next year they gathered toys again.


When Levi died in September 2010, Steven and Cindy decided to continue sponsoring the toy drive.


“Being in the hospital over Christmas and having such a traumatic event happen in our lives around the holidays, made both of our hearts really sensitive to people who aren't having such a great holiday,” Cindy said.


Presents collected during the toy drive will be unwrapped later this month.


But year-round Steven and Cindy celebrate the gift of life, Levi's life.


Around the bend
“I think I just expected that when we had kids we would have our 2.5 cute kids running around and we'd do PTA and those things that you just do as a mom,” said Cindy, while sitting in the living room of their Edmond home. “I just assumed that was what life was going to be like and it wasn't.”


Then she muted “Toy Story 2” on the TV and looked down at their 23-month-old son Jonah.


“He's a perfectly healthy little boy,” she said, “Because of Levi, I don't take for granted the time that I do have with Jonah because not everybody gets that time.”


True, with Levi, along with the constant need for care came never-ending worry.


“You grieve all the time, never knowing what's around the bend,” she said.


Actually, what was around the corner often wasn't all bad. The parents spent countless hours cuddling Levi, stroking the wavy hair thick as a lion's mane.


Cindy considers that a blessing.


She's had mothers tell her that as their children got older “they wished they could just hold them again.”


“For 3 1/2 years I got to hold him all the time,” she said, “and that was great.”


Happy 5th birthday
On Dec. 21, Levi won't be around to blow out candles or devour cake on what would have been his fifth birthday.


But there are other children who will celebrate for Levi when they open the gifts gathered during the toy drive.


“It's a way to remember him every year at his birthday in a happy sense and for the fact that he's not here any more,” Steven said.


That's because in some ways Levi is still present. Steven and Cindy see it every time someone hands them a toy.


“To see people love on our child by giving to others,” she said then paused, “well, that's very special to our hearts. That is in itself, a gift.”

Saturday, December 3, 2011

Bee-lieve Campaign: The Brave Little Soul

There are sooo many poems, inspirational stories, andecdotes, etc. regarding parenting a special little one... I generally try to steer a little clear of sharing those that are most religious. 

Why? Well since I myself, although very spiritual and believing of miracles, find it hard to settle on one particular organized religion or set of beliefs. Instead, I tend to be open-minded to many & truly believe that love should always be the guiding force in life. 

That said... and probably having partly shocked some readers... I loved this that was shared on a Yahoo Group for Brain Injured Kids. Brayden's diagnosis with hydranencephaly has definitely set straight my priorities, and made me appreciate life's smallest of blessings in full. It has created in me a stronger sense of self, a motivation and drive to speak up rather than cower down in the face of adversity or pessimistic attitudes. I have a renewed sense of hope, a greater appreciation in miracles... those happen every piece of every day. It definitely enlightens as to why suffering happens in this world, as ugly and horrific as it is, the outcomes are generally positive aside from the suffering itself:


The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. 

One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"


God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts."


The little soul was confused. "What do you mean," he asked.


God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."


The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"


God smiled and said, "You are a brave soul I know, and thus I will grant your request. 

But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. 

They have already chosen a name for you".


God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."


Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. 


Everyone prayed. Lives changed forever. It was good. 

The world was a better place. The miracle had happened. 


God was pleased.

Friday, December 2, 2011

Flashback Friday: Bee-Lieve Campaign


This week's flashback Friday, again from my previous blog, comes a story that brings with it proof in miracles...if you needed one. Originally published in March of 2010, I hope you take the time to read and appreciate the possibilities that exist for our little ones, without allowing the medically subjected impossibilities presented in medical textbooks, publications, and within the minds of professionals cloud your mind:


MRI comparisons = proof in MIRACLES
By Alicia Harper, Small Portion of a Life's Journey

After nearly two entire years, I finally have Brayden's MRI scans from the morning after his birth on CD and viewed them for the very first time this week. In my many months of reading and research, I've seen many MRI images of healthy brains and damaged brains from every angle. I'm not going to sugar-coat this... I was shocked!! I truly expected to see more cortex than I did, but at the same time I feel enlightened to the fact that there is no explanation for each new day... no explanations at all, only a fully renewed belief in miracles.

Brayden was born on June 30, 2008 with a previous diagnosis of possible holoprosencephaly. From these pictures at my first meeting after birth, you can see there is a definite issue:


Mommy meeting her 'lil man for the first time



Brayden Alexander

The following MRI images are from his initial scans completed hours after birth to make an official diagnosis...


Here is a scan of a healthy brain on the left, compared to Brayden's MRI scan from July 1, 2008:

Healthy Brain MRI: top view


Brayden's MRI: Top View

That gray stuff on Brayden's MRI, that is cerebrospinal fluid... that is all that is there! For one reason or another, most of his brain was destroyed in utero and replaced with these CSF filled sacs. There is no network of gray matter, the typical brain image you envision when you think about a brain.

For a better view, here are comparison MRI's from the side view:


Brayden's MRI: Side View



A healthy brain MRI: side view

Clearly different ... As you can barely see, Brayden has a VERY thin layer of cortical mantle. The cerebellum is there, but a bit small... but his readings state that it does have normal configuration and above average signal intensity. His brainstem is completely normal in size and signal... and that is about all that he has as far as the major portions of the brain go.

Knowing that he has little to no brain, you would never associate these type of scan images with him once you meet him. Trust me, I'm his mommy but I'm not in denial... read about my 'lil man by clicking on his name: Brayden Alexander "The Great" :) Put aside the images you have now seen, and try to imagine him accomplishing the things he has in the past 20 months that you can read about there... I assure you, it is next to impossible to associate the two together.

There are varying extremes of hydranencephaly, however my 'lil man fortunately has an intact brain stem and fully functioning cerebellum... more than some can say. Here are a few other scans of hydran children:



The following scan is a good friend of our's who is also living an amazing life with hydranencephaly:



You can read more about this little miracle at his mommy's blog by clicking on his name: We love you Brandon :)

Regardless of the varying levels of severity, bottom line is: the brain is BEYOND miraculous in function. Despite traumatic injury, or in Brayden's case congenital damage which became irreversible, it can function in ways that are completely incomprehensible... I don't care what degree you have obtained, how much schooling you have completed, or what type of professional you are... you don't know it all!! However, the people in the lives of these little miracles... we know, don't we?

If you're still not sure... here is Brayden this week in his brand new glasses (with a lesser prescription since one of his eyes has gained strength and can see better than 6 months ago). This picture alone speaks a million words:
I know I'm bias, but he's pretty stinking cute huh? And most importantly HAPPY!!!


“The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.” 
~ Pablo Casals

Thursday, December 1, 2011

The Bee-Lieve Campaign

As mentioned in a post a couple of days ago, the month of December will be dedicated to the sharing of stories from the heart. Stories that will re-instill the reasons to "believe in the impossible," and give you hope for the holidays and new year to come. I've asked other families of children who have received a diagnosis of hydranencephaly to share their stories, while also sharing some from across the globe that I have personally collected and found to be shareworthy.


On this first day of December, day one of our month-long "Bee-lieve" campaign, a heartwarming story from bee-utiful 11-year old Brianna's mommy Barb:


Bri & Mommy
This is one of my most memorable moments that  shows how special my little lady is and her impact on people in our community.



Every year we go to our local Festival of Trees for their Special Stars day. When it is Bri's turn to see Santa she has a special request to hear his bells. 


A couple years ago we were the last ones to see Santa. As we approached him he spoke to her by name. "Beautiful Brianna it is nice to see you again" he said. He reached for his bells knowing that was just what she wanted to hear. As he was ringing the bells he starting to sing to her softly. She was smiling and laughing. 


Before we knew it we were surrounded by an astonishing number of people who began singing with Santa. My heart was overwhelmed with joy. In all my life I had never seen anything like what happened that day. There was not a dry eye in the place. 


Brianna is truly a miracle in our lives and that day she shined brighter than any star in the universe. That kind of feeling is what life is all about. 


It doesn't matter what you look like or the different abilities you have everyone has the capacity to bring peace and joy to this world. When you let it in your heart you will feel a sense of peace as well. We see Santa every year and it instantly brings back that feeling of what happened that day.


Sincerely,
Barbara Fuller,
Mom to Brianna  


Christmas 2010