Monday, June 8, 2015

30 Days to Bee Hydranencephaly Aware: Besties

Day 8 in the #30daystoBEEhydranencephalyaware series:

Happy National Best Friends Day... last year we shared photos of some of our kids loving life together. You can check that post out here ~ it's incredible how our family-to-family resource network (aka FAMILY) continues to grow in size and quality of bond.

This year in honor of National Best Friends Day, I’d love to share with you how our families have connected to become a huge source of support for one another – there is an unbreakable bond built between the parents, as well as the children who have been given the opportunity to meet. Global Hydranencephaly Foundation created and maintains the largest, most active, online support network for families who are facing diagnosis of hydranencephaly for a child in their life. If you have a child with this diagnosis, or if your child is undiagnosed but you suspect they do have this condition, please contact us directly at or via Facebook.

Why is this network, these friends from afar and brothers/sisters by circumstance, so important to one another?

My journey began in 2008 - I wrote the following in 2011, and pieces of it came from the earliest days of our journey. Support is always important. TRUE, unwavering support from others who are on that same journey as yourself... when you don't have to explain it, they just get it.

Flashback Weekend, originally published on July 16, 2011

There is one day in particular that I wished I myself could build something to provide the support and guidance that I had thought I found online through the Rays of Sunshine group. This was the day when I found myself attacked for my personal decisions to avoid pharmaceutical and medical interventions for seizures and feeding issues. I couldn't believe how heartbroken I was to receive these messages, the criticism, the lack of support... how could a support group that I had found such solace and hope in, turn their back on me and be so horribly critical of my personal decisions as a parent? To call me selfish for not getting a feeding tube, to tell me I'm killing my son because I want to avoid pharmaceutical interventions as much as possible... I can still see those words that I read on the screen, I forgave but never forgot.

From CaringBridge on December 15, 2008; Brayden was a mere 5 1/2 months old then and I remember crying my eyes out over people I had not, nor likely never would meet:

"More and more I feel so very fortunate for the hope that I've been given by other parents in online support's the best feeling in the world to be able to interact with other parents facing the same obstacles I am, or will some day. But at the same time, in those same groups...or one in particular, I'm filled with disgust at being reminded how truly heinous some people on this planet can be. It really is just sad that people take such a tragic topic in people's lives and turn it into more torment, people that make it seem as if you can look to them for help and guidance in difficult times, when in all actuality they are there for all the wrong reasons. Whatever those reasons are, it's obviously not to help people as they let you believe. I guess that the world has to be made up of all sorts of people, good and's just disheartening that the people you think are the good ones, turn out to be the bad! It would be wonderful if someone would just put a big neon sign over those people, to warn of "impending danger" to your emotions!"

So, I started my own support group - on Facebook: GHF Family-to-Family Resource Network

And our family is so amazing that we have received the 2015 WEGO Health Activist Award for Best in Show: Community or Forum and several other nominations from WEGO Health and also over the years.

You know the saying, something along the lines of:

"Family is not always blood. Family is not always those people in your life who you have known the longest. Sometimes it is those people who stick by you and support you, through the ups and downs, and never let you go far from their heart."

Ok, I embellished that to my own liking... but you get the drift and I'm sure you've heard variations of the sentiment yourself.

I've said it several times here, I'll say it again - I have immense amounts of gratitude for my hydran-family, our network of families who come together from afar in an online support group on Facebook. Some of those families have met others, I've met a few. MOST of those families have never met another family there. 

Yet, those families hold each and every one of the other families close in their hearts at all times. I know for myself, I think about the ill children constantly, those who have grown their angel wings forever hold a place in my heart, and those who accomplish great things... I celebrate for them in a big way, just as if it were my own child! My daughters know nearly every child by name when they see their pictures. These families are a part of my life, my heart.

While the circumstances that brought us all together are far less than ideal, I feel that we all agree that we could not have found a greater bunch of parents to share in this journey with. 

besties = I found this post and thought it did a great job giving definition to the term:
12 Qualities the Person You Call Your Bestie Should Have, from Elite Daily with my own embellishments to make it more hydran-journey appropriate.

Friendship is an interesting kind of love. There’s no contract legally binding you two together, there’s no unspoken rule about loving each other unconditionally, and there’s no real binding commitment to the opposite person other than what you are willing to put in to the relationship.

But maybe these are the reasons why our friendships are so valuable. The option is always there to back out at any time, and yet, with the really, really authentic ones, we never do.

Because at the end of the day — after the breakups and divorces and estrangements — we choose the companions we want in our lives, and they are the ones worth sticking around for.

And if we’re really lucky, they possess these qualities:

1. No judgment

the advice is always there - take it or leave it - but we won't judge the decision you make when it is what you believe to be the best choice for you and your family
2. Genuine

true-blue and committed to one another; the kind of friends that will attack an online troller who shares a hate-filled rant about one of our children - or supports your whole family in whatever challenges faced. We have one another's back.

It's never "work" to maintain the bond - it's just there.
3. Acceptance

no doubt about it - we are all in this together and the arms are open to everyone who joins us on this journey

4. Trustworthy

what is shared in the group, stays in the group - regardless of the good, the bad, or the everything in between...

5. Respect

we won't always agree with one another (what family does?) but we will always welcome and support your opinion - appreciation of the differences are part of the journey

6. Forgiveness

mistakes are made and passions run high - sometimes stuff just "comes out" but we all forgive, understand, and support in the end

7. Support

we are all here because we choose to be here - to share in the journey together, regardless of what chapter we may be on. Whatever the support you are seeking - during good times or bad - you have it.

8. Dependable

24/7 there is someone awake and available to offer guidance, advice, or shoot up a quick prayer

9. Thoughtful

remembering special, or traumatic, days in the lives of one another is important - sometimes remembering to NOT remember those days, or remember them silently, are valued as well

10. Listener

sharing a rant about your frustrations and fears is sometimes all you need to get through the next moment of your journey - we have that here

11. Shares your humor

not everyone can experience an epic blow-out in the worst way and laugh about it

12. Loves you for you

all walks of life, varying cultures and countries - you are loved beyond measure

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