Saturday, December 13, 2014

December is Universal Human Rights Month

The following is from this month's e-newsletter, The Bee's Buzz. You can subscribe HERE.

Whatever it is that you are celebrating this month – may it be a joyful one!

While I do not want to take away from that joy, I do want to bring awareness to a topic which I have personally spent a greater part of this year exploring and debating – Human Rights.

December is Universal Human Rights Month. To most, especially here in the United States where we are home-based, human rights just seem like a challenge that goes relatively unchallenged. The reality of it is that challenge is faced daily, too often by those who are never given the opportunity to stand up to the challenge – children who are given a diagnosis of Hydranencephaly are a part of that community.

The definition of human rights, from the United Nations Officer of the High Commissioner for Human Rights is this:

“the rights inherent to all human beings, whatever our nationality place of residence, sex, national or ethnic origin, colour, religion, language, or any other status. We are equally entitled to our human rights without discrimination. These rights are interrelated, interdependent and indivisible.”

Let me repeat a piece of that “…or ANY OTHER STATUS.”

Further from the UNOHC:

Universal human rights are often expressed and guaranteed by law, in the forms of treaties, customary international law , general principles and other sources of international law. International human rights law lays down obligations of Governments to act in certain ways or to refrain from certain acts, in order to promote and protect human rights and fundamental freedoms of individuals or groups.”

I don’t want to turn this topic in to a debate about right to life versus abortion; in fact, I make a conscious effort to avoid those debates since that is not what our organization is on a mission to challenge. However, our mission is to ensure that EVERY child given a diagnosis of Hydranencephaly is given the opportunity to live the best quality of life possible, to not be given up on with encouragement by medical professionals before being given this opportunity, and to ensure that our families have the information and support they need further ensure their child does not have their basic human rights withheld from them, based upon diagnosis – a diagnosis that, in some cases, changes or becomes medically challenged after birth.

Universal and inalienable, they say…

in·al·ien·a·ble inˈālēənəb(ə)l/ adjective unable to be taken away from or given away by the possessor

“Human rights are inalienable. They should not be taken away, except in specific situations and according to due process. For example, the right to liberty may be restricted if a person is found guilty of a crime by a court of law.”

That does not tell me that a child given a medical diagnosis, should have their rights taken away because of that diagnosis.

Interdependent and indivisible, they say…

“All human rights are indivisible, whether they are civil and political rights, such as the right to life, equality before the law and freedom of expression; economic, social and cultural rights, such as the rights to work, social security and education , or collective rights, such as the rights to development and self-determination, are indivisible, interrelated and interdependent. The improvement of one right facilitates advancement of the others. Likewise, the deprivation of one right adversely affects the others.”

“…such as the RIGHT TO LIFE.”

Encouraging a family to abort a baby based solely upon a diagnosis of Hydranencephaly is a direct violation of that child’s human rights.

Equal and non-discriminatory

As stated in Article 1 of the Universal Declaration of Human Rights: “All human beings are born free and equal in dignity and rights.”

I’m not here to debate when life truly begins either – however, I am going to continue to advocate for parents to not be directed towards aborting a child because they are wrongfully led to believe that their child will live a life of suffering and hopelessness. Rarely does a child with Hydranencephaly suffer through life needlessly, unless that child is given up on by medical care professionals who believe that providing no medical intervention is the best treatment for them – no feeding tubes, no vaccinations, no shunt placements, no treatment for a common cold… literally no intervention, because these little lives because “what is the point in prolonging the inevitable?”

The point is that these are lives that are being given up on far too soon and in the hands of the very people who are sworn to enhance health and protect/save lives: medical professionals.

So, as you gather to celebrate the magic of this holiday season – please consider keeping Global Hydranencephaly Foundation in your hearts as well. Whether through financial giving, volunteering of your time and talents, or through whatever means of support you are able to offer… we appreciate you immensely. We are often battling an uphill struggle, even within the special needs community, for acceptance and advocacy privileges in order to fight for the basic human rights which are said to be inalienable, non-discriminatory, equal and universal. These rights do not fall freely upon the children we aim to provide individualized support to – but just as they have always done, they will keep defying those odds stacked against them and proving the value of their lives in their own communities.

The Office of the High Commissioner for Human Rights (OHCHR) works to offer the best expertise and support to the different human rights monitoring mechanisms in the United Nations system: UN Charter-based bodies, including the Human Rights Council, and bodies created under the international human rights treaties and made up of independent experts mandated to monitor State parties' compliance with their treaty obligations. Most of these bodies receive secretariat support from the Human Rights Council and Treaties Division of the Office of the High Commissioner for Human Rights (OHCHR). Learn more at http://www.ohchr.org/

Monday, December 8, 2014

Meet the Bees Monday

Meet Faith!

GHF-Meet the Bees-Faith Jeffries

 

If you'd like your child with a hydranencephaly diagnosis to be featured in a "Meet the Bees" collage on our blog, website, in print material, and awareness campaigns - please email for further instruction: President@HydranencephalyFoundation.org

Friday, December 5, 2014

We HEART our Volunteers

Today is International Volunteer Day #IVD2014.

WhGHF-Volunteer Awareness Month Headerile GHF is nearly my whole heart & the greatest passion of my life, I hope you all realize that there are  several hearts that are involved in this mission - all of which are deeply passionate. We are 100%  volunteer-driven and not even one of the individuals receive financial gain from the time, talent, and skills  they donate in order to help us accomplish our goals.

Words will never express the appreciation I have for all of our volunteers.

 

Dedicated Hearts


Dedicated hearts like yours
Are not so easy to find.
It takes a special person to be
So generous and kind.


To care so much for your fellow man
Is a quality all too rare.
Yet you give of your time and talents,
For all in need to share.


So thank you for being a volunteer,
We're privileged to work with you.
We want you to know how appreciated you are,
Not just today, but the whole year through.

Thursday, December 4, 2014

Bathtub Party Day

Who knew that there was a specific day to have a bathtub party?!

[caption id="attachment_779" align="alignleft" width="183"]Brayden with a bubble nose Brayden Alexander using his inflatable neckring from http://www.waterwaybabies.com during therapeutic bath time - his favorite time of day![/caption]

Happy Bathtub Party Day!!

To commemorate the day, go check out our previous post "Splish Splash" and an article from our website:

Therapeutic Bath

A few of the most simplest forms of therapy and healing can be done in the comfort of your own home, without the intrusion of health professionals and offering yet another opportunity to connect with your child.


“The way to health is to have an aromatic bath and scented massage every day.”


–Hippocrates, Greek Physician, Father of Medicine


Massage techniques will be discussed in other articles, however I will be outlining some extremely simple bath recipes for curing various ailments, relaxing tight muscles, and maximizing overall general health. The list of recipes is truly endless, so I hope that this will ignite your interest in to seeking out other combinations that work best for your needs.


First, I’d like to outline the ways to use your ingredients in the following bath recipes. Most of the ingredients listed can be easily purchased in your local grocery or health food store:


                Oils: for all baths containing essential oils, you may use the essence alone or mix with a vegetable oil, or honey and cream which provides the additional benefits of nourishing the skin. I suggest mixing with a carrier to better disperse the oil throughout the bath and do not add the oils until the bath is full and your body has adjusted to the temperature. Pouring it in during fill-up will cause the oils to quickly, and wastefully, evaporate.


                Bach Flower Remedies: Named for Dr. Edward Bach who discovered, researched and tested these about 70+ years ago; are natural preparations made from the healing essences of flowering plants and trees. Use just as you would the oils, alone with no carrier required.


                Homeopathic Remedies oftentimes come in pellet form with directions attached.


                Herbs, Spices, and Flowers: Many recipes call for steeping. In this  method you will bring a pot (do not use aluminum; only ceramic, glass, or other metal containers to preserve the therapeutic value of the herb, spice, or flower) of water to a boil on the stove, gently put in the ingredients, and allow them to simmer for twenty minutes, without boiling again. Add steeped contents to the tub.


Homeopathic Baths


Colds & Flu


The following ingredients can be added, together, to a warm bath to help resolve ailments associated with colds & flu:


                -5 drops eucalyptus oil (opens nasal passages)


                -5 drops peppermint oil (to invigorate the body)


                -5 drops lavender oil (stimulates white blood cells to combat infectious bacteria)


                -2 tbsp Vitamin C crystals


                -8 drops thyme oil, or fresh steeped (combats chest congestion & raises immune system)


                -1 oz bottled ground ginger (pulls out mucous from your system)


Physical Shock relief: sprains, bruises, pain & aching muscles


-8 to 10 pellets of Arnica, which belongs to the sunflower family & can be found in herbal stores. It can also be taken internally to help with aches & pains. Soak anywhere from 10-30 minutes, with maximum results appearing well after the bath. If conditions persist, you can take up to 3 baths per day.


Joint Pain, Arthritis & Rheumatism symptoms


                -3 drops of eucalyptus oil (anti-inflammatory)


                -handful of comfrey leaves, used for over 2000 years to heal fractures and wounds


-2 handfuls of chaparral herb, helps the body protect itself by replacing cells after operation/injury


Steep the comfrey & chaparral leaves for 20 minutes and add to bath water along with eucalyptus. Soak for approximately 30 minutes.


Headache


-5 drops of peppermint oil, can also use 2 drops on a compress for the head out of a bath, for any headache


                -5 drops of lavender oil, 2 drops for a compress, for neck tension and/or eye strain headaches


                -5 drops of chamomile, 2 drops for a compress, for gastric or nervous tension headaches


                -3 drops of eucalyptus, 1 drop for a compress, for sinus headaches


Use oil for suspected cause. A massage of the temples will help alleviate discomfort as well.


Get-Moving, kick-starting your energy flow


                -20 drops Chestnut Bud Bach Flower Remedy


Tight Muscles & Discomfort, inflammation relief:


                -5 drops eucalyptus oil


                -1 cup your choice of salt (Himalayan, Epsom, etc.)


General Healing Bath


Salt Water Therapy (SWAT) is the combination of sea salts and water. Some uses include hydrotherapy baths for recovery from joint and muscle injuries and pain; psoriasis, eczema, and other skin conditions; body detoxification; and simple relaxation. Minerals such as magnesium and potassium are drawn from the warm sea salt bath into the body, while toxins are actively drawn out for elimination. Mineral rich Sea Salts are recommended for SWATs, as opposed to rock salt or common salt (sodium chloride), which are depleted of nourishing minerals.  Therapeutic effects of salt from the Dead Sea have been renowned and praised for centuries.  It is unique in comparison to other sea salts because of its high concentration of salt (27% as opposed to 3% in normal sea water), and the composition of the brine is also unique.  The balance of the dead sea salts are magnesium, potassium, calcium chloride, and bromides; all important in the therapeutic process:


-Sodium is important for lymphatic fluid balance.


-Magnesium combats stress and fluid retention, slows skin aging, and calms the nervous system.


-Potassium energizes the body, balances skin moisture, and is a crucial mineral to replenish after intense exercise.


-Calcium prevents water retention, and increases circulation while strengthening bones and nails.


-Bromides help ease muscle stiffness and relax them.


My personal preference for use in salt baths are Himalayan Sea Salts, which are considered the most pure and cleanest salts on the planet. We also utilize these particular sea salt benefits through utilization in cooking and air purification in the form of lamps. These salts hold a whole host of benefits, primarily via the existence of 5 beneficial minerals found in these beautifully colored salts (Meditate This, 2010):


-Calcium is crucial for the formation of strong bones and teeth, and the benefits are particularly marked in women and children. As we get older, our bones become brittle, as do our nails and our hair. Calcium helps us build bone strength and mass, warding off common conditions such as osteoporosis, the weakening of the skeletal system. Bones and ligaments become stronger and less prone to fractures and sprains that often occur when our calcium levels decrease.


-Magnesium is essential to the healthy functioning of all living cells and is the 11th most abundant element in the human body. Magnesium has been used in anesthetics, sports medicine for relief of tired muscles, and antacids for the soothing of the stomach.

-Potassium is crucial to heart function and has been used to treat hypertension and heart conditions. During physical activity, our body utilizes and then loses large amounts of potassium, which must be replenished to avoid soreness and tightness in the muscles. Potassium is found in foods such as bananas, broccoli, and many other fruits and vegetables. It is a powerful diuretic as well.

-Copper and Iron both aide in the formation of red blood cells, and support the nervous system, improve immune system response, and promote healthy bone structure and blood vessel function.

Epsom Salt, a wonderful alternative to higher priced sea salts, contains magnesium sulfate which helps alleviate pain from muscle aches, sprains, and bruises (Irish, 2011).


Simply add 1 – 2 cups of your choice Sea Salt or Epsom Salt to your bathtub.  Optionally, add a few drops of an essential oil (highly concentrated distilled plant extracts) such as Lavender for additional relaxing aromatherapy benefits.  Fill the tub with LUKEWARM water to dissolve the salts. It is recommended to use lukewarm water, or water that is about 2 degrees warmer than body temperature.  Hot bath water will cause the skin to eliminate rather than absorb (think Heat=Perspiration), thereby inhibiting the absorption of therapeutic minerals from the bath water.  Soak for 20 – 30 minutes, pat dry, and wrap up in something warm (Irish, 2011).


Purifier-Detox


                -1/2 lb freeze-dried seaweed, for in the bath and to create a face mask if desired


                -10 drops of your favorite essential oil


Emotional Soothing Baths


Sleep Like a Baby Bath, for the end of exceptionally stressful days:


-handful of chamomile flowers, steeped, inhaling the steam of possible. Pour liquid, after straining flower remnants, in to your bath. Massaging the big toe will help expel the body’s negativities and relax the whole self.


Insomnia & Tension Relief: 5 drops of marjoram oil with 10 drops of lavender oil, soak for 20 mins


Alternative Baths


Quartz Body Healing:


                -1 or more cleansed quartz crystals. To cleanse, soak in salt water for a minimum of 15 minutes


References:


Irish, Lisa (2011). Salt Water Therapy: An Ancient and Pocket Friendly Path to Tranquility and Well-Being. Retrieved from: http://dfsmag.com/salt-water-therapy-an-ancient-and-pocket-friendly-path-to-tranquility-and-well-being/.


Meditate This (2010). The Multiple Benefits of a Himalayan Salt Bath. Retrieved from: http://meditate-this.blogspot.com/2010/12/multiple-benefits-of-himalayan-salt.html.


Muryn, Mary (1995). Water Magic: Healing Bath Recipes for the Body, Spirit, and Soul. New York: Fireside.

ThoughtFULL Thursday: International Day of Persons with Disabilities

...formerly World Disabled Day - a great change, but I would still prefer "International Day for Persons with Varying Abilities" or something of the sort!

International Day of People with Disabilities 2014
About this day - started in 1992, after being proclaimed by the United Nations General Assembly resolution 47/3, the goal is to promote an understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with limited abilities. The observance of this day also hopes to increase awareness of "gains to be derived from the integration of persons with disabilities in every aspect of political, socila, ecconomic and cultural life." (from the UN ENable website)


The theme for 2014 is one that may seem a bit disconnected from our mission and the needs of the families we serve - but technology has brought the community of families with hydranencephalic children so much more than is often recognized, just perhaps not in the area of focus for this year.

Sustainable Development: The Promise of Technology


This theme has been working to explore the role of technological advances in disaster risk reduction/emergency response, enabling of efficient and inclusive work environments, and developmental goals that prove sustainable and inclusive to those with limited abilities.

Since 2009, the Department of Economic and Social Affairs has also organized a film festival as a part of the events at UN Headquarters to commemorate the Day. The United Nations Enable Film Festival (UNEFF) includes short disabilty-related films selected on the basis of their content and message that can help raise awareness of disability issues and further promote the full and effective participation of persons with disabilities in society.

Take some time to reflect on how technology has helped improve the quality of life for your family, and specifically your child. Some things that come to mind that GHF has found of great value:

~*the ability to network families in to a greater family of support, guidance, and sharing of resources across the globe by way of the world wide web


~*empowering parent advocates to research the possibilities that exist for their child, despite being delivered a grim prognosis


~*medical technology & research possibilities that are too enormous to list in full


AND


~*the extensive advancements in the world of communication and life-enhancing devices that are utilized by the children we represent, every day (iPads and other tablet devices, especially!)


Don't Stop Believing featuring Ethan-Bella-Zek-Johnny-Natan Shi




   In what ways has technology improved the quality of life for your child?      For your family? Chime in within the comments below!






To learn more about this day and the goals of the United Nations Secretariat of Rights for People with Disabilities, visit the United Nations Enable website.

Sunday, November 30, 2014

This Giving Tuesday

Black Friday is everywhere - literally.

Shop Small Saturday is semi-everywhere if you are a big promoter of small businesses - which WE are!

Cyber Monday is Black Friday - for those who would rather avoid the crowds

but Giving Tuesday - what is THIS all about!?

This campaign was started in 2012 by the 92nd Street Y and the United Nations Foundation as a response to commercialization and consumerism in the post-Thanksgiving season - perhaps as a way for individuals to let go of a little guilt from overspending, by doing good through giving.

So, what is so great about this day (besides the fact that you can support a pretty great  mission - Global Hydranencephaly Foundation, of course!)


November 25, 2014








Which day is better - #GivingTuesday or Black Friday? Well, here are 10 reasons why #GivingTuesday is so much better than Black Friday...


1. #GivingTuesday is much safer than Black Friday. You can avoid a trip to the hospital after getting trampled by people just trying to get into a store.




2. You don’t have to wake up at the crack of dawn. You can donate at any point during the day, whenever is most convenient for you.




3. You can participate from the comfort of your couch, in your PJs.




4. You can eat ice cream and watch Netflix while donating. That's always a bonus.




5. You don’t have to break the bank to make a donation.




6. You can feel good about the money you gave, rather than regret the money you spent shopping. 




7. Giving a gift on #GivingTuesday takes only a few seconds, where standing in lines could take hours...




8. Giving to charity gives you good karma points!




9. Lower your tax bill with these charitable contributions!




10. Most importantly, you get to help out a good cause. Choose some of your favorite organizations to donate to, and help be a part of a greater change. You could choose any cause to donate to - the impoverished people in your community, curing an illness, funding baby pandas, and so many more. 









 





Great info from Steph Drahozal, Social Marketing Maven at our  resource Salsa, who work to "Ignite Action. Fuel Change."















Saturday, November 15, 2014

NORD Portraits of Courage Gallery

Through our partnership with the National Organization for Rare Disorders, we have been made aware of this amazing opportunity & hope that you will take the time to nominate an individual in your life that has displayed the admirable qualities sought after below:




 

NORD seeks input from our Member Organizations, Corporate Council Members and the broader rare disease community to nominate individuals they feel embody the spirit of the Gallery.

Individuals honored in the Portraits of Courage Gallery posess the following admirable qualities that embody and illustrate the rare disease patient experience:

  • They have demonstrated courage in their own journey, and have helped others find courage in theirs;

  • They have shown remarkable resislience in the face of hardship;

  • They support, and are advocates for, all patients living with a rare disease and those affected by it.


While NORD awards several groups and individuals at its annual award event, the Portraits of Courage Gallery is reserved for patients and families affected by rare disease. This includes:

  • Patients - children and adults

  • Parents of children with a rare disease

  • Other family members/caregivers of a rare disease patient


Nominate someone courageous today!

2329 Days & Growing

[caption id="attachment_745" align="alignright" width="456" class=" "]Termination Recommendation "Your baby will not live a quality of life worth living. I recommend termination." *said by many doctors upon diagnosis of hydranencephaly in utero "The idea that some lives matter less is the root of all that is wrong with the world." ~Dr. Paul Farmer[/caption]

This photo is the ultrasound photo of Brayden Alexander, the inspiration behind this mission, taken approximately 1 month prior to his debut in to this world - 2329 days ago. Notice that the area where his brain "should" be is a black hole of nothingness (I put quotations around that word "should", since he was born exactly as he should have been - but typically speaking, a baby would have brain tissue on display there). That message at the top, that's the message we were delivered on the day this image was taken, as well as every week before this was taken and every week after until his birth.

[caption id="attachment_746" align="alignleft" width="199"]534736_281780825257748_530391503_n Who could resist this sweet little face?[/caption]

Doctors would not or maybe could not share with me the true diagnosis, only that he had a deadly brain anomaly that would not allow for him to survive. They drew pictures. They set up models of a brain compared to his brain. They encouraged me to speak to a psychologist who would help me to "deal" with the great level of denial I was "obviously" in with my persistent declines of offering termination. This photo is one of the several dozens we were gifted because there was minimal chance of him being born alive - in fact, next to 0% chance of him being born alive.

[caption id="attachment_747" align="alignright" width="300"]63320_282770795158751_821211265_n Meeting mommy for the first time - love at first sight![/caption]

What the doctors would share with me during my pregnancy - and share with me FREQUENTLY they did - is that we should terminate his life because, "he would not survive to term or very long after his birth." Despite the doom-and-gloom filled weeks prior to his debut, not full of the anxiously-awaiting-arrival pregnancy celebrations that most mothers experience & I had with my previous two children - this sweet little face made his earthly debut a little earlier than his planned c-section on June 30,2008.

201,267,218 seconds.
12,076,033,080 electric jiffies.
3,354,453 minutes.
55,907 hours.
2,329 days.
332 weeks.
166 fortnights.
85 lunar months.
75 months.
25 quarters.
6 years.
6.57 lunar years.
1.60 olympiads
1.28 lustrums.
0.64 decades.
0.43 indictions.
0.25 generations.
0.13 jubilees.
0.06 centuries.
0.00638 milleniums.
0.00000002774844180840 galactic years.
0.00000000020126721800 exaseconds...


...this little life began here on earth & without uttering one full sentence, has changed the world in more ways than most do in an entire long lifetime.


2329 days ago, we began our journey with hydranencephaly. On that first day we heard of the diagnosis of hydranencephaly - not presented in it's true definition (in short, the absence of the cerebral hemispheres to varying degrees) but instead as "your baby does not have a brain and will not live beyond a few days." *big shout-out to the doctors at University of Missouri-Columbia for delivering the news that would typically strip a parent of every ounce of hope for their child's life - without hope, there is nothing*

Flash forward 6 years, 4 months, and 16 days to this day: November 15, 2014 - 2329 days have passed & you will find us remembering this little man's amazing life and continuing to bathe in his big, bright light.

Brayden Alexander Harper indeed did grow his little angel wings, just as the doctors predicted - just not when they predicted. Instead of those "few days" we had been predicted to spend with our baby boy, we celebrate 1599 days of life - that's 138,153,600 seconds, 2,302,560 minutes, or 38,376 hours that we were blessed to have him in our life. If we had listened to the doctors and not allowed Brayden to guide the way - that number of days, seconds, minutes, & hours could have very easily not have been possible at all.

2324 days ago, on July 5, 2008, we brought him home from the hospital, despite being encouraged against doing so. You read that right - we were encouraged against doing so. Apparently parents can do that, just sign their child over to the hospital to live there. We could not & encourage other families not to either, despite recommendation to do so. If you feel as if you cannot find the strength to bring your child home with a terminal condition - please contact us so that we can help your child find a home to spend their days in. No child should ever, regardless of the amount of time they have here on earth, spend that time in a hospital - they need to be wrapped in the arms of a family that can love on them for however many few or however many several days they have here on earth.

[caption id="attachment_748" align="alignleft" width="237" class=" "]Brayden with daddy after shunt placement in August 2008. Brayden with daddy after shunt placement in August 2008.[/caption]

2297 days ago we won our fight for placement of a shunt to help with hydrocephalus pressure when doctors saw the procedure as "pointless". Again, doctors are not always accurate when reading their crystal ball - do not allow them to predict your child's future & instead advocate for them to live the best quality of life possible, regardless of the expectations that are tagged to the diagnosis.

Starting before 2329 days ago until today we have cried ALOT and have even been angry more often than that...

...but ultimately, we have found enlightenment to the possibilities that exist for all babies given this diagnosis.

Never was Brayden suffering in pain & anguish, nor was he having his life sustained with extreme medical interventions. He was a baby boy that was sharing his love of life with everyone around him - which he did for all of his days on earth. He smiled, he laughed, he danced, he cried, he lived and he ultimately LOVED.

[caption id="attachment_753" align="aligncenter" width="559"]His Journey's Just Begun featuring Brayden His Journey's Just Begun, in loving memory of Brayden Alexander Harper "Don't think of him as gone away his journey's just begun, life holds so many facets this earth is only one. Just think of him as resting from the sorrows and the tears in a place of warmth and comfort where there are no days and years. Think how he must be wishing that we could know today how nothing but our sadness can really pass away. And think of him as living in the hearts of those he touched... for nothing loved is ever lost and he was loved so much." ~Ellen Brenneman[/caption]

2329 days later and he continues to share that love through all who were privileged to meet him here on earth, or have since met him through stories & photos. And appropriately, since his little life stands as a reminder of all things to be thankful for, he took those last breaths here on earth during the month of giving thanks. I wrote this last year for Global Hydranencephaly Foundation's e-newsletter "The Bee's Buzz" and shared it again this year:

~I’m thankful for the lessons he taught me, which there are so very many, but a big one was this: to slow down, to not waste precious time worrying over work or money or cleanliness, but to find peace in cuddles on the couch and laundry undone and vacuuming that goes neglected.

~I’m thankful for the awareness he brought to my attention; the importance of focusing on the heroes during tragedies, giving them the praise and glory, and not giving second thought to the people who do not bring more to your life. I lost people in my life when my journey ventured on a path no one else wanted to travel with me, but the ones I found along the way are far more valuable to my life than those I have lost.

~I’m thankful for the unquestionable strength and determination he displayed, despite the obstacles he endured. If he could overcome and conquer, just as his bee-buddies do every day despite being told they “can’t” or “won’t” or “shouldn’t”, than it’s true when I say that everyone should “Believe in the Impossible!” There’s a reason that is our foundation’s mantra and why that word is never allowed in the vocabulary of anyone I talk to!

~I’m thankful for the memories we made. There was a time when memories were not presented as an option; when termination was presented as the “best choice” and imminent death was our expectation. That time was also time wasted as I cried folding clothes I thought he would never wear, or remembered experiences he would never have. Instead we got to live and love and experience life together: traveling, hiking to waterfalls, swimming in the ocean, toes in the sand, and his favorite sweet potatoes.

[caption id="attachment_749" align="alignright" width="300"]Definition of a Hero featuring Brayden "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." ~Christopher Reeve[/caption]

 

~I’m forever thankful that I was introduced to my hero by being granted time here on this earth as his mommy, the keeper of his memory, and the voice of his life. Not only did I get to be his mommy, but I have the honor and privilege of continuing to advocate for families on his behalf, ensuring that they have the opportunity to live the best quality of life possible… exactly as Brayden did. That’s not only a tremendous honor, but a huge expectation to live up to.

 

~I’m thankful that his big, bright light continues to shine through this very foundation and that I’m able to share his memory by sharing the lives of his friends. That I am able to connect with families on a personal level, expanding my own family to include our hydranencephaly families, and that we can share on this journey together; embracing one another in sadness and struggle, lifting one another up in darkness, and praising with celebration of the littlest obstacles overcome, which are often overlooked by those who are onlookers to the journey. It truly is a wonderful journey, though many struggle to recognize that.

ism-inspire yo to be a special kind of person

As we remember the inspiration behind Global Hydranencephaly Foundation and it's mission - will you continue to let the number of days, 2329, continue to climb as his light continues to shine bright on the world, bringing so many more reasons to "Believe in the Impossible." 

Thursday, November 13, 2014

BUZZ!! Shop Thirty-One

It's the last hours of our Thirty-One fundraiser, so shop some great deals (example: for every $35 spent you get $7 medium square or regular tote) plus many more great deals! A great opportunity to do some Christmas shopping while supporting one of your favorite causes....

GHF-Thirty-one Party

 

To shop now, go HERE!

 

Monday, November 10, 2014

We're BAACKK!

Rekindling of the Flame

 

It's been a LONG break from blogging and I've missed it - I've missed all of YOU, our readers!

Now that the blog has finally made it's transition here to WordPress, we are getting back on track and you can expect to be seeing regular posts again!

Regular Wordless Wednesday photos full of smiling, silly bees!

Bee-ographies or Meet the Bees collages on Mondays!

Tried & True Tuesday posts full of information on equipment, toys, and other fun stuff that have been tried by the bees themselves!

Fact-BUZZ Fridays challenging those ridiculous medically subjected misconceptions that just keep coming and won't go away - plus just some fun facts that you're sure to be shocked over!

Community BUZZ posts sharing ideas that will help you to bring awareness to your own communities - or ways that you can help us to help our families!

And so.much.MORE! 

And if you ever have anything you'd like to contribute, please do by emailing me at President@HydranencephalyFoundation.org. We are ALWAYS looking for new material to share and also volunteers to help in a wide range of capacities! Hope to hear from you soon & excited to be writing again...

Tuesday, September 9, 2014

Under Construction!!

I've been saying it for some time.... but this blog TRULY is undergoing some serious work! Please be patient with me as I weigh the options of possibly switching to Wordpress to host the blog, updating and organizing the content that is here to make it easier to navigate, and making this a much easier venue for interaction & discussion for all things hydranencephaly-related. 

As a reminder, we are ALWAYS seeking volunteers to help with various projects around our mission. Email me President@HydranencephalyFoundation.org 


In addition, please be sure to find us in various other locations around the web (click the name to buzz right on over to check it out):

website
YouTube
Pinterest
Facebook
Twitter
Reddit (still learning the ropes of this one!)
Linkedin

If you ever stumble upon misuse of content that you believe to be the property of Global Hydranencephaly Foundation, or one of our families; please send your report to President@HydranencephalyFoundation.org This is especially important if it involves one of the children we support.

And one more mention, please be sure to subscribe to our enewsletter "The Bees Buzz" if you haven't already.Thank you for your continued patience and unwavering support all along the way! 

Under Construction!!

I've been saying it for some time.... but this blog TRULY is undergoing some serious work! Please be patient with me as I weigh the options of possibly switching to Wordpress to host the blog, updating and organizing the content that is here to make it easier to navigate, and making this a much easier venue for interaction & discussion for all things hydranencephaly-related. 

As a reminder, we are ALWAYS seeking volunteers to help with various projects around our mission. Email me President@HydranencephalyFoundation.org 

In addition, please be sure to find us in various other locations around the web (click the name to buzz right on over to check it out):


Reddit (still learning the ropes of this one!)




If you ever stumble upon misuse of content that you believe to be the property of Global Hydranencephaly Foundation, or one of our families; please send your report to President@HydranencephalyFoundation.org This is especially important if it involves one of the children we support.

And one more mention, please be sure to subscribe to our enewsletter "The Bees Buzz" if you haven't already.Thank you for your continued patience and unwavering support all along the way! 

Wednesday, July 23, 2014

Tuesday, July 22, 2014

Bee-Inspired: A heavy dose of "Believe in the Impossible!"

Meet Ben Jackson. Born with cerebral palsy, Ben didn’t want that to define him. So he pushed himself to become a wrestler.
benjacksonEven then, Ben wasn’t finished.
He’s now striving to compete at the international level in weightlifting. Ben is just one inspirational athlete who truly defines what it means to win from within.

and reminding us all to...

             Believe in the Impossible! 
Thanks Gatorade for the reminder... 
Watch his story here:

Monday, July 21, 2014

Meet the Bees: And the Winners Are....

We are happy to announce the winners of the remaining two categories for registrants in this year's first annual "Let's Roll!" Hydranencephaly Awareness Walk/Run event. We announced the winners of our Wheelchair Decorating category last week, which you can check out HERE

drumroll please.......................

father of bee-beauty Grayce:

mother of bee-beauty, Burkleigh, Haley:

Tomorrow we will be publishing our event video to our YouTube channel, so be on the lookout for that; maybe even head on over and subscribe so you won't miss any of our upcoming videos, or catch-up on the videos that are there! 

From all of us at Global Hydranencephaly Foundation, thank you for helping to make our first annual walk/run event a HUGE success!! 

Friday, July 18, 2014

Fact-BUZZ Friday: Just a Laugh?

When you have a child that doctors tell you will likely not survive.... and that IF they do, they will be in a "persistent vegetative state"; unable to hear, see, love, learn, laugh, or thrive... you tend to celebrate the little things. 

When those little things turn in to BIG things, it's cause for "stop-everything-and-watch-what-my-kid-can-do"...

then watch it again...

kind of celebration.

A laugh falls in the BIG things category of celebration-causes. 



Until you discover the fact that a laugh may not be "just" a laugh...

I've written about this before via my old blog, during my pre-nonprofit in-the- making portion of this journey with hydranencephaly. 

But, it's kept alive on the web via Wellsphere. When they say, "once on the internet, forever on the internet," it's true and in this instance its a good thing! Check that post out HERE

It just so happens that updated information was published to Disabled World about a week or so ago, so I wanted to share and bring light to this little-known seizure type.

Definition from Disabled World: "A gelastic seizure, also known as "gelastic epilepsy" is a rare type of seizure that involves a sudden burst of energy, usually in the form of laughing or crying. This syndrome usually occurs for no obvious reason and is uncontrollable. It is slightly more common in males than females. The main sign of a gelastic seizure is a sudden outburst of laughter or crying with no apparent cause."

Now head on over to read the full article HERE. It's pretty interesting... but please don't let this topic stop you from enjoying those smiles and chuckles your bee shares with you!! 

photo courtesy of essexbees.co.uk


Monday, July 14, 2014

Meet the Bees Monday: Our Winner!

Meet the winner of our first global-wide hydranencephaly awareness walk/run wheelchair decorating contest....
a special thank you to all our participants in this year's First Annual event! All who participated by decorating their mode of transport will receive a token of gratitude for their amazing efforts! 

More winners announced in other categories in the days to come, so stay tuned!!

*only individuals who registered and returned their sponsor forms are eligible for prizes.

Thursday, July 10, 2014

Thoughtful Thursday: Always an Opportunity to Bee-lieve!

National Cleri-WHO?

That's what I said when I was planning this month's social media calendar. 


A clerihew is a whimsical 4-line poem with an AABB pattern, so off of the top of my head I created one as an example:

the bees keep their buzz

& they keep it because
there is no one to say
life has to be a certain way

It's THAT simple, really!! Now, let's hear yours for this Thoughtful Thursday!

Ironically, today is also "Don't Step on a Bee Day" 

Of course, the day was first created to bring awareness to bee stings in the summer time, then praised for the opportunity to bring more awareness of the shrinking honey bee population (which still continues to be of great concern). I say we recognize this day as a day to point out even more reasons to "Believe in the Impossible." Our bees sure don't let anyone "step on them" and they remind us every day that they are calling the shots, despite those medical professionals who may say otherwise!! 

image courtesy of arkinspace.com
image courtesy of magpieandcake.blogspot.com


Otherwise to celebrate this day in a fun way, how about crafting a bee hotel for your yard? It will help provide a safe stay for the bees buzzing through your area... 




PS: this blog is undergoing some SERIOUS overhauling!! expect BIG things... if you'd like your child's blog to be linked to ours, email me at President@HydranencephalyFoundation.org