Friday, March 27, 2015

Fact-BUZZ Friday: Quality of LIfe is important.... at EVERY stage!

While Global Hydranencephaly Foundation chooses not to take a political stance on the pro-life/abortion topic - we do believe in life and the importance of educating yourself to the value of life, at every age.

As a reminder, here is one amazing video... if YOU'RE happy & you know it - clap your hands!

From mom, Jen Cardinal: "“At our 14 week ultrasound our baby was clapping, so I sang a song with our doctor as my husband filmed. The experience is one I’ll never forget. The baby clapped three times, then the doctor rewound and scrubbed it while we sang. No mystery. It was amazing.”"

You can read more of the article from by visiting HERE

BUZZ: Happy 4th Bee-Day!

Tuesday, March 17, 2015

Happy St. Patrick's Day!

A few Irish blessings & love from all of us to all of you.... Thanks for your unwavering support!!

Thursday, March 5, 2015

I'm Gonna Love You

Whether you're adjusting to a new diagnosis of hydranencephaly and the long list of impossiblities that comes with it, wading through the highs and lows of caring for your child, battling the roller coaster of emotions that comes with the journey, or missing your bees who have since grown their little angel wings...

one of the biggest pieces of advice that I can give:

Do not waste a moment of any of that time in worry or sorrow - cherish what you have, whether it be life or memories you made.

"I woke up in tears
With you by my side
A breath of relief
And I realized
No, we're not promised tomorrow
So I'm gonna love you like I'm gonna lose you
And I'm gonna hold you like I'm saying goodbye
Wherever we're standing
I won't take you for granted
'Cause we'll never know when, when we'll run out of time"

~Meghan Trainor with John Legend

Wednesday, March 4, 2015

BUZZ: Happy Heavenly Bee-Day

BUZZ: Happy 9th BEE-Day

Take the Pledge - End the R-Word

Today is the day - Take the Pledge HERE

Check out this enlightening post from a few years ago about how your choice of words can be used to cause serious damage - Words Hurt from Thursday, September 6, 2012

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people.

I know that you all likely hear others use this word in a derogatory way, perhaps you use it yourself... reconsider your choice of words. You can use the following dialogue sample to help you feel comfortable confronting others about their use of the r-word.

From the R-Word website:

Having a conversation about the R-word can be difficult and often uncomfortable. Use the dialogues and tips below to help you successfully articulate why the R-word is hurtful and harmful in everyday speech.

Dialogue Scenario 1: When a friend/family member uses the R-word

Person 1:       I am such a retard; I forgot to get milk at the grocery store.  

Person 2:       Hey, I would appreciate it if you didn’t use the word retard around me anymore.

Person 1:       Oh don’t worry about it; it’s not a big deal.

Person 2:       It actually is a big deal, when you use retard as a synonym for stupid or idiot, you are saying that all people with intellectual disabilities are stupid, and that’s definitely not true.

Person 1:       But I’m not making fun of people who are mentally retarded, it’s just a figure of speech. It’s how I talk.

Person 2:       The thing is, when you use the R-word as slang, you really are hurting people with intellectual disabilities because of the negative connotation of your comment. The R-word has been associated with people with intellectual and developmental disabilities since its inception, so when you use the word in a negative context, you’re putting down people with intellectual disabilities, regardless of if you mean to or not.

Person 1:       I appreciate what you’re saying, but it’s imbedded into my vocabulary. I couldn’t stop saying it if I tried.  

Person 2:       I’m not trying to tell you what you can or cannot say, but what I want you to recognize is that people with intellectual disabilities deserve respect, and using another word instead of the R-word is one step towards making them feel respected and valued in society.

Person 1:       Ok, I can understand it might be hurtful to use the word when a person with an intellectual disability is around, but why does it matter now, when I’m just hanging out and joking with my friends?

Person 2:       Using the R-word doesn’t just hurt people with intellectual disabilities, but it also hurt their friends and families. [Discuss personal story about why this is important to you]. Having seen the hurt that the R-word can cause, I know it’s important for me to take a stand and try to change the conversation. I hope you can understand why it hurts and upsets me when the R-word is used and why I would appreciate if you chose another word to use.

Person 1:       I’m sorry; I didn’t realize how much the R-word upset you. I will try to use another word instead.

Person 2:       Thank you for understanding.

Tips for a successful conversation:

  • Stay calm and collected, it will not help the other person see your point if you are angry and emotional.
  • Try to understand the reason he/she disagrees with you. Listen, be respectful and then provide a counterargument that highlights the harmful and hurtful effects of using the R-word.
  • Share a personal story about why the R-word is hurtful to you. Personal stories will help people more easily relate to what you are saying because it illustrates your personal commitment to the campaign.

If you encounter a question you are unable to answer, direct the individual to the Spread the Word to End the Word website ( to learn more about the campaign, Special Olympics and Best Buddies.

Monday, March 2, 2015

Help to End the Term "Incompatible with Life"

This was sent to my nonprofit address, but it is worth the effort of you participating if you are able - if nothing more, please check out the effort and share with others!! This mission is aimed at the government in Ireland, but this concern is not one that only the population in Ireland is facing... #beeAWARE

"Urgent: Here is how YOU as a medical practitioner can help end the term 'incompatible with life' and protect babies with terminal illnesses

Dear Partner, 

I hope this email finds you well. My name is Tracy Harkin and I am a mother to a little girl with Trisomy 13. Along with other Irish mothers involved with our support network Every Life Counts ( I am very concerned by the  attempts being made by the Irish Government to legalise abortion for babies with conditions such as ours. Our babies are being described in the most horrific way, and are being labeled "incompatible with life" which is a medically meaningless and insulting term, designed specifically to justify abortion for our babies with life limiting diagnoses. 

Together with medical professionals and legislators we are going to the United Nations in Geneva on March 11th where there will be a meeting of the United Nations Committee on the Rights of Persons with Disabilities. There, we will be calling for an end to the use of the term "incompatible with life" when describing unborn children with life limiting diagnoses. More information on that event can be found here:

At this event we will launch the Geneva Declaration on Perinatal Care which correctly asserts that the term "incompatible with life" is not a medical diagnosis and should be used when describing unborn children with a terminal illness or severe disability. The Declaration also calls for the development of Perinatal Hospice services to care for these babies and their families before, during and after birth. Full text of the Geneva Declaration can be found at

We at Every Life Counts invite all medical practitioners worldwide to sign this important declaration and make a real difference to the lives of babies with a life limiting diagnosis. It is imperative that this initiative has the support of the global medical community as we campaign for the care and protection of our sickest children and oppose moves to legalise abortion for these babies. 

Please sign the Geneva Declaration today, 

Kind Regards

Tracy Harkin 
Every Life Counts