Sunday, June 26, 2011

Flashback Weekend

Another post from the Small Portion of a Life's Journey blog, the thought development of what led me to finding some of the most amazing people on the planet, other families faced with a diagnosis of hydranencephaly for their littlest love, to share a vision with in creating the Brayden Alexander Global Foundation for Hydranencephaly... Looking back, I see the determination that existed from the very beginning, and it continues to fuel the effort now. Be sure to visit our foundation's web site to follow our amazing progress: www.hydranencephalyfoundation.org  We are now an official foundation, awaiting our 501c3 tax exempt status, and things are changing quickly! 

‎"Without inspiration the best powers of the mind remain dormant. There is a fuel in us which needs to be ignited with sparks." 
 ~Johann Gottfried Von Herder

Ramblings from a Mommy on a Mission 
Originally Posted June 20, 2009...

I'm not sure if many others experience this, or will understand what I'm even portraying with my thoughts through words...and I hope that anyone reading this doesn't take this post in the wrong context. But it's somethings I've pondered over for quite some time, and what better way to think it through than to share with you.


I like to think I have a wonderful support group, but it's not the support group I lived my entire life building. It's not family nor friends that understand the best... it's a new support group, full of new "family" who know just all too well the journey we are on. 

I received a little criticism in the beginning of this journey, during my pregnancy, for making so much of the details available to as many people as I could. It was a "private family" ordeal, after all, so it should be kept that way. We no longer live in the olden days when news didn't spread like wildfire. I felt that it was better for me to put all the information I had out in the open, to clarify any misconceptions and to make sure everyone that wanted to know the story knew it correctly. Not to mention the important fact that I felt great amounts of comfort in knowing that more and more people were saying a little prayer when they heard of our story. 

Instead of my true intentions, my sharing of this journey was misconstrued as a sad attempt to gain attention. Rest assured that attention, in a selfish way, is the last thing that I crave. Let it be known, that I normally like to keep to myself and am perfectly happy in my own little world with my family and the ones I love.


I will say, that although attention isn't what I crave...it IS what I want. I want more than anything to share our journey with as many people as I can, not selfishly, but to help others who are not as fortunate as we have been. I, personally, have been blessed with the optimism to keep going with a positive attitude (for the most part) on what could be, and is, viewed by most as a very dismal situation. 

I haven't exactly pinpointed where my outlook grew from, my husband (I LOVE HIM more than words can say) has always been quite positive in times of gloom and doom, so maybe that has a little to do with it. I also greatly related to an interview on some daytime talk show with Michael J. Fox discussing his book (that I've been dying to read) Always Looking Up: The Adventures of an Incurable Optimist. He too lives with great optimism under such great obstacles, and I heard there that it's been proven that optimism exists in your genes and isn't always something that's obtained. Regardless of where it came from, sadly not everyone is blessed with that ability, nor surrounded with supportive people. I say surrounded by, however, that isn't truly the case for us all the time.


My life took a very different path upon starting this journey. A journey that not I, nor any other soul on the planet, would have ever expected to make. No one person, close to me anyways, has ever voiced they're feelings on being part of this journey with us... I feel that many do it out of some sort of obligation, since that many are family and all. I have, however, in more ways than one, felt the feelings that people truly have. Actions really do speak on a much higher decibel than words could ever. Family, these days, aren't as close, nor are friends. Very few have become much closer, but most have drifted off to some far off place where the world is fair and innocent babies aren't teetering on the edge of life here on Earth. It must be hard, to know what to say or how to act, and I know first hand that in those moments it's easier to just hide from it. I don't resent anyone for feeling that way, I've been there, but I wish that those people knew that I would never expect them to know how to handle themselves under the circumstances. The wrong thing said can be overcome with a simple apology or the shear confession to how they feel. The great distance that grows out of this fear becomes a forever decision... once the separation is there, it becomes quite difficult to close the gap. It can take years, or I should say that it can be years wasted, ending when it's much too late and the reason for the journey has left.


I just wonder, how others living similar life experiences, have dealt with bringing the people who WANT to support the journey, comfortably closer? I like to think that most want to be, but are uncomfortable in doing so.... there must be a way for it to be easier.


My son, miraculously, is nearing his first birthday. I am so filled with joy in reaching this big day, in just 9 more days exactly...I never dreamed we would be so close. It saddens me, that many won't be celebrating with us. Not physically, I don't expect anyone to travel for a birthday and most would have to go far, but mentally I don't believe the happy thoughts will be with us, nor will we be top of mind to most at any given time on this momentous event. Again, no one knows what to say or what to buy or whether they should be happy, after all he is obviously not "typical" regardless of the obstacles he has overcome. He can't crawl, nor can he sit without a little help and he won't be digging in to his birthday cake with that great eagerness that most babies display on their first big day... he has, in my eyes, overcome so much and achieved greatness that many never do in a long lifetime and I wish that everyone could see it through my eyes.


Because of what this past year has meant to me, it has become my everything. "It" meaning, this diagnosis of hydranencephaly. It is my life, or it is a greater portion of my life. I want more than anything for everyone facing the same diagnosis, to know what it means. Not by textbook definition ending with death and ending soon, but truly what that seemingly scary word can wonderfully do in your life. Every day, nearly, I meet someone new who has been touched with a similar experience... personally. Sometimes, the fate isn't as great as we've been fortunate enough to witness. Knowledge is so very lacking when it comes to this, among many other conditions not well-known. More times than not, the same advice as we were given in the beginning is carried out til the end...weeks, maybe on a lucky occasion months later. That's how fast the end comes for too many. Babies with hydranencephaly are often not given the chance that every human deserves at life. It's sad, and it's true...and I believe that it will never change until more information is shared and babies are helped to thrive instead of sent home to die. 

So many people have been down this road before us, completely unbeknownst to me, and if I'd not found some of those people our road would have been a very short one just the same as too many before me. 

This is so true, in fact, that regardless where our journey now leads us...I know that it will lead me, personally, to reach out to as many people as I can. To find those people from the very beginning and share my knowledge and experience before it's too late, before they commit their babies to hospice, or medicate them on to their next home in heaven right after they have been forced to give up on any chance of being able to do anything else. Before these parents are stripped of any belief that there's hope...all by medical professionals who are gauging the value of these lives by a prognosis typed into a medical textbook. 

And hopefully while I'm on my journey, and while I'm putting it so out in the open, others will begin to understand that it doesn't always matter that you say the right things or know how to act. Understand that love and support doesn't always come from offering material objects as gifts, but that emotional support and the spread of awareness by sharing information and knowledge to help others can be the greatest gift of all...or if nothing else and better yet, a little prayer sent up on a regular occasion for those that are on the journey too. The journey is more vastly traveled than most can imagine...and that prayer alone will help millions, if not billions.

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