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 President@HydranencephalyFoundation.org 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:
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 About.com over the years.
You know the saying, something along the lines of:
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.
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.
mistakes are made and passions run high - sometimes stuff just "comes out" but we all forgive, understand, and support in the end