Saturday, July 16, 2011

Flashback Weekend

Rome wasn't built in a day... consider this foundation Rome. And I'll warn you now that this post is a long one!

Though we were incorporated in the Commonwealth of Virginia on June 14, 2011; there were many steps involved in it's growth and development. This week's flashback will give you a history of our foundation's existence... why it came to be, how it has grown thus far, and where I hope it will go. 

I've been chronicling Brayden's journey with hydranencephaly since his first month of life on CaringBridge. Looking back on those earliest days, I forget how they were, yet they seem like only yesterday... how cliche, yet so very true. 

There is one day in particular that I wished I could provide the support and guidance that I had found online through the Rays of Sunshine group, a 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!"

When we moved to South Carolina from Missouri, when Brayden was only 6 months old, I began to dive headfirst in to more online research and networking. I literally reached out to everyone, everywhere only to be met with a huge lack of knowledge that hydranencephaly even existed. No one knew about it and in their efforts to act as if they did, they simply Google it and replied with the same line I already had memorized: prognosis is death within the 1st year, with a small percentage of children surpassing their first year. Why did I know these families in the support group who had children much older and doing very well, while the medical community possessed such an insanely pessimistic mentality in regards to treatment and prognosis? I wanted that to change, and quick!

Along came more research and greater networks with a greater amount of families, not only with hydranencephaly but other similar conditions. The condition of anencephaly (where both the cortex, most of the brain, and the upper parts of the skull are missing) became a huge interest to me... putting me in to touch with a beautiful little girl named Mia who was born to one of the most amazing mommies I know, who I have sadly since lost touch with. When following her blog, I was disgusted by some of the comments that I would find left there. 

From CaringBridge on May 6, 2009:

While doing my usual browsing around the internet for information, I stumbled across a few webpages that were quite disturbing...I realized that there are some quite ignorant people in this world!! I was mad for a bit, and briefly thought about picking out these people one by one and telling them how ignorant they truly are...instead I started a blog about hydran. Not about Bray, necessarily, but to share the experiences and knowledge I've gained and put it all in one place. I've wondered many times what would have happened had I not found positive information after I left the hospital without a glimmer of hope, I know what would have happened...I wouldn't have fought for Bray to have a shunt, or a good doctor, or anything...and ultimately he wouldn't be here, let alone progressing as well as he is! I hope to reach out to someone beyond the general hydran webpage that exists now, hope to help someone through my own life experiences... I've already been contacted by a few people who I've never been in touch with before that have hydran children, and are doing great like Brayden...not all the terrible, gloomy stories I hear from other places. I am kind of excited, and pretty proud...someone told me to write a book, I like this better for now!

I started the Small Portion of a Life's Journey blog... to hopefully reach some of these negative ninnies and confront them head-on. Instead of getting upset with them, I became determined to educate them out of their "ignorance is bliss" mentality. 

From May 2009, the Small Portion of a Life's Journey:

As I've mentioned before, I've spent hour upon hour reading every bit of information about hydranencephaly that I can can just about call me an expert. If I don't know off of the top of my head I have folder after folder of websites that can give me the answers I need, not to mention groups of support from others who may have the answers because they share my life experiences on that level. I've always felt at peace knowing every symptom of complications associated with the condition, at ease knowing what to look for in regards to arising problems. Sometimes, that peace of mind is far from a blessing though.

There are days when things aren't sunny and optimistic.

When a different cry, or a funny bat of the eye...or oftentimes even a lack thereof...becomes something you become so concerned with that you have the Neurological Department at the nearest hospital on speed dial and have dialed them 10 times in one day, it's not fun. I haven't literally done that, but I've been very close a time or two. I have, however, made the dreaded 911 call out of shear panic over a coughing spell that turned my baby's face blue. He was fine before the operator had even hung up, but it put me in such a panic I thought the EMT's may be headed to revive me instead of my baby! Most of the concerns that arise, aren't because Brayden seems to be in some sort of trouble, but because I worry that I'm overlooking something. Often I'm recognizing an experience of another child who has had not such a pleasing outcome in the end, all because doctors didn't know what they were looking for in the beginning. At times, I almost obsess over wanting to be sure that if they don't know, I do...and that nothing is ever overlooked as being just nothing to worry over. 

The minor woes of other mom's battling a pesky cough, an ear ache, or a little fever means something much more to me than to them and I wonder why they worry more than I do at times.

That's only at times, most of the time I keep it together nicely and calmly and remember that not everything will become a problem. He is just like my other children, he'll have good days and bad and will feel better at times than others. He will have moments of cooperation, and times of stubbornness (in that aspect he proves that he's indeed my child~ha). But, I have to remind myself not too look too deeply into every little thing, because that's when the sense of panic sets in. That's when I feel that knowing too much, having too much knowledge becomes powerful...but not in the sense you would at first think.

Then in September of 2009, I came in contact with a man by the name of Michael Illions whose son Cole has hydrocephalus (the part of hydranencephaly that makes my 'lil man have a big fluid-filled noggin' and the necessity for a shunt). This seeming dispair, instead of dragging him down, ignited a strength and motivation in him that created the Pediatric Hydrocephalus foundation and the affiliated National Pediatric Hydrocephalus Awareness day for the first time on September 1, 2009:

Hydrocephalus is "simply" water on the brain, and Brayden's condition is this and anencephaly, no brain, combined. I was thrilled to see that September would be recognized as "National Hydrocephalus Awareness Month" for the first time this year! Now to learn how to proceed with a "National Hydranencephaly Awareness Month." Anyone have any suggestions?

The effort led by the Pediatric Hydrocephalus Foundation, Inc. to have Congress designate September as “National Hydrocephalus Awareness Month” is being realized today, as September 1st, 2009 starts the first ever “National Hydrocephalus Awareness Month.”In addition to raising awareness about Hydrocephalus, H. Res. 373, which passed at the end of July, is a call to action: Whereas public awareness, professional education, and scientific research regarding hydrocephalus should increase through partnerships between the Federal Government, health care professionals, and patient advocacy groups, such as the Pediatric Hydrocephalus Foundation;Whereas these public-private partnerships would ensure that individuals suffering with hydrocephalus and their families are empowered with educational materials, informed about the latest research, have access to quality health care, and are able to advocate for increased research and funding in order advance the public’s understanding of the condition, improve the diagnosis and treatment of hydrocephalus, and one day, find a cure“.

The PHF has only been in existence for 8 months and to have this accomplishment, which took 3 months from start to finish, is pretty amazing, and shows the strength, dedication and commitment from the Hydrocephalus community”, said Kim Illions, President of the PHF, Inc.Michael Illions, the National Director of Advocacy for the PHF, Inc. added that “The response from Washington was great. Everyone we met with as we were building support, was interested to learn just how serious and common Hydrocephalus is. The hundreds and hundreds of phone calls, emails, letters and faxes from parents, family and friends within the Hydrocephalus community certainly opened up some eyes and made Congress take notice and action on the Resolution.”

"National Hydrocephalus Awareness Month” will be celebrated on September 13th, as the PHF, Inc. holds their signature event at the Roosevelt Park in Edison, NJ. The PHF 2009 WALK & Family Fun Day will be attended by over 300 people.To register for the WALK and/or donate to the PHF, Inc., go to: and click on “Register” or “Donate.”All proceeds will benefit the Pediatric Hydrocephalus Foundation, Inc, the nation’s largest organization dealing solely with the support, education, advocacy and funding for research of Pediatric Hydrocephalus.For more information please contact Kim Illions at or (732) 634-1283

That ignited a spark in me, how I was going to follow in those footsteps to make that grand of an impact for families faced with a diagnosis for hydranencephaly... but then came a streak of devastating passings of children I had come to love, children I had never met but loved just the same as if I had. I still have a hard time when one of our hydran-family members earns their wings, but optimistic had to be the ruling emotion so I focused on that:

I know, mostly through Facebook (my main source of adult interaction) that I seem to be annoyingly positive every single day. Through my status updates, and even most people that meet me in person probably think that...I know that the school guidance counselor, and now my primary care physician do...often it's relayed to me as, "why are you in such denial." It's not denial, it's a positive state and I try to live there every day. But the fact of the matter is, I'm not exactly THAT positive, or at least not THAT much of the time. But, I want to be...ALL of the time.

I just wrote a paper, or really only a few paragraphs, about self-actualization for my Counseling Theories class. Oddly enough, I am completely absorbed by these psychology classes. I knew that I wanted to help other people, to feel satisfaction in bringing others satisfaction in their lives, and felt that I would be great at doing so, but I didn't realize the self-exploration I would endure throughout...and it has only been two months. By achieving a greater level of self-actualization, people are taking the steps to becoming the person you ultimately want to be. No one is exactly who they want to be all of the time, we all have our flaws. But I am striving, and fighting to stay positive and optimistic regardless of the darkness that lies ahead...whether it be sooner or later or somewhere in between. Happiness is what life is all about, and despite the struggles that I have to wade through in life, I have to do it happily and learn from it and grow from the experiences.

Part of the way I convince myself to stay in this positive state of mind, is by the exposure of as much positivity as I can in every place that I can. I love quotes, so that is a great source of hope and inspiration. I also love to read, and there are a million and one books full of obstacle tackling, miracle performing stories of children and adults alike who are defying the odds. Even stories that finish with a seemingly sad ending to most, with a battle against an enemy disease lost or a journey to defy the odds cut short, they inspire me. Blog-hopping, parent-to-parent networking, making connections with other mommies and their extra special children...all wonderfully important aspects of my days. I no longer believe that there is an unhappy ending...I truly believe in happily ever after, regardless of the disappointments and grief we are faced with there. You learn to focus on the positive things that you experience on your journey, and sometimes the shortest journeys have the most to teach you about yourself and your relationships with others as well as to appreciate every small little blessing you're given without asking for much in return.

I most certainly have my days...but I hide those days, or try to counteract the negativity I feel with a strong dose of inspiration and optimism. I struggle to not let these days come, but they still do...mostly just in moments now rather than in weeks or clusters of days like they used to. I cry because I'm overwhelmed, I get angry because everything is so frustrating, I feel guilty because I'm the mommy and I want to protect my babies from harm, I feel completely helpless and out of control....yet I have to go on. I have to push the negative vibes and the pessimistic ideas out of view and out of my life. I can't live with them, and I'm much happier without them.

So, I do. I go on with tears when he pulls on my heartstrings by frowning and pouting with his lower lip sticking out when things aren't going his way. I go on by focusing on baby smiles or little chuckles in the middle of the night when he yells for me because he wants his paci and doesn't know any other way to get it than for mommy to get it for him. I go on sleeping in spurts throughout the night because then I'm at ease in knowing that my 'lil man is breathing, and sleeping peacefully even if I can't. I go on by talking all day with and singing silly made-up songs to my 'lil man, even if he'll never sing them back. I go on by feeling relief in a snort or lip smacking from my 'lil man's crib in the morning that tells me that it is time to come pick him up for breakfast. I take pleasure in having that said breakfast sneezed all over me, and laughing because I never remember to grab something to protect myself from these sneezes that seem to come every single morning for the past 10 months or so. I enjoy spending time each day creatively disguising the oatmeal, or other breakfast foods consumed and sneezed, that I'm covered in. I heartbreakingly endure the crying and yelling when it is brace or splint time, because although he hates it I know it's not hurting him it is only helping him. I smile and tell the staring people at various stores good morning when they look at me like I've beat my child as I stroll through cramming groceries and other necessities under the stroller basket because I'm not coordinated enough to push a cart and pull the stroller like some extra special mommies are.

About those lovely staring, glaring, judging people...they don't make me angry anymore, or even self-conscious. I used to worry all day long what people were thinking when they gave us those looks...and I get them ALL the time, but now I take satisfaction in knowing that they just had the pleasure of seeing a miracle right before their eyes and they didn't even know it! I just want to tell them, "Hey, this 'lil man isn't supposed to even be breathing!!" and see what they have to say to that. Aside from the visuals in the neck brace, thumbsplints, glasses, and an abnormally large head that's a little misshaped...he is living the best life on the planet and is loved by people from around the globe. He may not be able to move from point A to point B yet, but by golly he's trying and he certainly has the determination to do it. He may not be reaching the milestones that other babies are at 16 months old, but he's reaching his own set of milestones which weren't even in existence...writing the book on milestones for hydranencephaly in fact, because according to the books now there are no milestones to be met at all!! Better yet, he has made myself and even others reach a higher level of self-actualization, a better understanding of self and who we want to be. He has helped my other children, and other children in his life, become more understanding, gentle, caring, sympathetic, and unjudging of others. He has shown me how strong I can be. He has opened up my heart and allowed me to love myself, so I could love others just as much. He has taught me, and so many others, a long list of lessons and he can't even say a word (but we're working on that too, first one will be momma!)

On May 15, 2010, from Small Portion of a Life's Journey, I was reignited on my mission to continue my passion to this cause:

I have likely mentioned before my complete and total infatuation with obituaries, but in case I haven't I will now. I do not even have to know any person listed there without becoming intrigued with the length of their obituary. Sometimes it is short, with minimal information and a nonexistent list of family members that have been left behind or are awaiting their arrival in the afterlife. Other times their is a long list of achievements they have accomplished, and friends and family that have been touched throughout their life.

What determines the length of an obituary? I've never written one, nor do I hope to ever have to in this lifetime... although I likely will. Although I have always possessed this seemingly morbid infatuation with the lives lived by those who have passed on, death is now a topic that is much closer to reality for me. Those that personally know me are likely confused, since I do not handle funerals well at all. I can't breathe, I can't think, I literally feel like the church or place of viewing is closing in around me. I generally find myself standing out front trying to regroup enough to keep my feet under me... I don't even have to have a close personal connection to feel this way. Strange, I know...

Lately, I have had my feelings somewhat hurt which sadly also coincided with the heartbreak I felt at the loss of their loved one. Being a parent to an extra special little one, I feel, gives you a strong unspoken connection to other parents of extra special little ones. I somewhat feel closer to strangers I have never met in this lifetime than I do to friends and family I have known my entire life. How is that? And am I the only parent that feels that way?

The hurt feelings and heartbreak comes nearly every time that a little one passes due to complications from their medical condition. It is difficult to look to a family for support and guidance along a course they started ahead of you, or to connect with them as you lead them on the course you began before them, only to have them abandon ship the second they are no longer on course... their child has joined the angels, and suddenly that connection is broken. Not always, but when it happens I must admit that it hurts my feelings a bit.

I feel their heartbreak, my heart absolutely breaks right along with them. Of course, I cannot even begin to fathom the heartbreak they are feeling... it is incomprehensible unless you have been there. I, for one, cannot imagine the day I am faced with losing one of my children. And when that day comes, how will I react? Will I break ties with all things associated with them? Primarily, when Brayden's days have come to a close, since it is a near certain that they likely will before mine... will I be able to continue what I have started...or will it be easiest to abandon ship myself?

I want to think that this journey I began, that has become a passion and near obsession, is something that I will forever remain passionate about even when my personal connection isn't physically with me to give me a constant reminder why I am doing this. Why I am so eager to change the misconceptions of hydranencephaly, and other similar rare neurological conditions?

I want to always feel the same for these children... I want to always have faith that I can and am making a difference in a little life somewhere. I don't want my own obituary to be short, and I want the list of lives I have touched to be extensive. At the same time, I want people to remember and recognize that my son's life was unbelievably amazing. That he was not suffering with hydranencephaly, that he is not afflicted with hydranencephaly, that he is not a condition... he is amazing, he has changed the views of so many... he cannot utter a word, or maybe a little, but I speak for him. He speaks for me... and influences so many lives, hopefully beyond his own life.

I think you can likely see the picture I'm attempting to pain here. This foundation isn't just something I dreamed one night and woke up to start. It took me around 8-10 months of reading and contemplating before I even confronted others to help as Board members for the foundation. It was a progression, one I have been criticized for from the start. For sharing "too much" through Brayden's CaringBridge, to being in denial while spending "too many" hours researching online in hopes of offering my son the best quality of life possible, to listening to others' hopes to fulfill their dreams of starting a foundation, to volunteering but meeting adversity to my attempts in assisting to make that happen, to doing it and still finding criticism. 

I don't understand, I've been in the position of caring for a child with hydranencephaly. Though I haven't grieved for Brayden's death, I have faced grief in other ways. I have one of the most open hearts of anyone I know, I trust and trust until there is no trust left to have. Yet I still find myself bullied and slandered, that my intentions are inadvertent to our foundation's mission. I can assure you, though it would be difficult to prove for sure, that I have sacrificed far more than I will ever ask in return to make this foundation grow to what it has become in just a few short months. 

Sure, I have put my son's name on it, not for the recognition but for the remembrance once he joins his angel friends in the heavens. He is my inspiration, he oozes inspiration. And this foundation, just as he has in three short years, will continue to flourish and grow despite the odds and obstacles placed against it. It will live and grow, helping families when Brayden's own little body cannot do it anymore... the foundation will be his legacy, his life will be the spark that ignites this passion in other families... a hope for their own child, the echo of "believing in the impossible."

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