Saturday, December 13, 2014
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
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
While 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 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
[caption id="attachment_779" align="alignleft" width="183"] 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:
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.
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.
-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).
-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
Quartz Body Healing:
-1 or more cleansed quartz crystals. To cleanse, soak in salt water for a minimum of 15 minutes
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.
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
~*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!)
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.