Monday, September 30, 2013

Bee-Worthy Share: I Know You!

Please never doubt the value of a network of support from those venturing on the journey you are on; whether ahead, behind, or beside you. Those are the individuals who you will hold especially close in your heart for the rest of all time...

This was written and shared earlier this month by our friend, the "other" Julia Roberts at her blog Kidneys and Eyes, where she blogs about her two children with special needs. She's also the amazing co-founder of SupportForSpecialNeeds.com where GHF just launched a public group for support & information: Global Hydranencephaly Foundation Support & Information Network

I know you
by Julia Roberts

I know you.

You are me.

You love your kid and fight for them. Medically, educationally, socially, all of it.

You absorb your kid’s pain and sorrow and bring them light and love.

You comfort your kid in pain and you cry in private.

You protect and defend.

You research. You re-research.

We are alike in so many ways. I’ve met you or I haven’t met you. We’re still alike.

We are different only in the ways we get some things done to get the same results. We respect in each other that we each have our own path.

You have advocate muscles you never knew were in you. Me too.

You memorize medications, side effects, symptoms of illnesses and diseases and monitor the little idiosyncrasies of such with laser focus.

You see what others do not see. You make them see what they should.

You are like a hawk disguised as a parent.

We share a lot of commonalities, you and I. Like fear over big and (what others deem) small things, financial stress, relationships needing our time and attention, and our deep appreciation for making even minutes count.

We especially appreciate the good times because we live with the knowledge there will be bad times. We know the bad times will come so we make those minutes count.

Milestones mean more to us than typical parents. We agree we’re not typical but our normal feels normal.

We are alike, you and I. I feel connected because of our shared happy and sad events.

I feel stronger when I know you have been and I feel sad when you’re sad.

When something tragic happens to your family it feels very closely like it’s happening to mine.

Because you are me.

Thursday, September 26, 2013

Thought-FILLED Thursday

Our friends at You And Your Disabled Child on Facebook always share a thought of the month, which we always look forward to since they're always most perfectly fitting with the challenges our families face! This month's thought is no exception:

"Thought of the Month, September 2013: I often wish that doctors and other professionals would take a few moments to consider the impact the diagnosis and prognosis they are about to give will have on the parents of a child with special needs, and choose their words more carefully. Some parents will react to the news that their child is unlikely to achieve very much by becoming determined to prove everyone wrong but others may feel that even trying to encourage the child's development will be pointless. Also, any prediction of future levels of ability should be prefaced by the words "in my opinion" because at the end of the day that's all it is - the truth is that nobody knows what the child might achieve given the right help and opportunities. I'm by no means advocating that a glowing picture of the future should be painted, but don't kill off hope without so much as a second thought - you will probably forget the words you used as soon as the next family walks in but the parents who are leaving your office will remember them for years to come!"

I could have very well written that thought of the month myself... and have likely shared that very thought, with my own personalized spin, before.


I won't speak for other families, but I will say that most families have experienced the same discouragement during diagnosis and presentation of prognosis as we faced... 


Brayden was diagnosed with a terminal brain malformation at my 24-25 week ultrasound and we were instantly advised to terminate... in fact we were always advised to terminate and we learned to not look forward to joy-filled prenatal visits, but instead learned how to make our way through each appointment without letting the doctors tear us down in to uncontrollable bouts filled with hopeless tears (which I failed miserably at, nearly every time... yes, that was me sitting in front of the University of Missouri-Columbia hospital bawling my eyes out every month from March 2008-June 2008). 

I won't lie, the option of a "medically induced necessary termination" was even considered a couple of times, before becoming no longer an option. When my niece was stillborn the very same day of that initial ultrasound, I eventually took that as a sign to remember that the decision of whether Brayden lived or died was not mine to make. Something that was a little harder to remember was that the doctors were not in charge of determining life or death for my child either. I don't regret my decision, never have, but it's been thrown in my face several time from friends, family, and even total strangers.


"Why would you make such a selfish decision as to give life to a baby who could not live a life worth living?"

"He can't live without a brain, you must be in denial."

"There is a reason the doctors told you to have an abortion, he is just suffering."

That's right, apparently I have friends, family and even have run in to some total strangers online and in person who have been given the power to judge whether another's life is worth living... not only that, they can tell from an ultrasound image or a cute baby face that there is suffering... amazing, isn't it?? 

So, it was selfish for me to believe that giving Brayden a chance at the life he deserves was the right thing to do... apparently *eye roll*. But, while it seemed cliche at the time, I now wholeheartedly believe that every life is brought in to this world with a purpose... regardless of how little or how long... and that all things happen for a reason. I think most of you all know Brayden's purpose and the reason for him coming in to this world.

When Brayden defied those first odds and survived to term, he wasn't supposed to survive to leave the hospital. When he did survive a couple of days during my own recovery, we were then offered the opportunity to sign him over to the hospital to live his final days so that we didn't become "too attached". (As if carrying him in my womb for 37 weeks and 5 days did not create a bond like no other bond). 

Needless to say, we brought Brayden home and we loved him, as his sister Ady has said, 
"we loved him to life!"

And we did, we loved him and we fought for him like no other!
Against "all-knowing" doctors who advised us so many times that what we were fighting for was pointless, that we would not change the inevitable (his death, likely within the first year since that's what the medical textbooks say). Our purpose wasn't to change the inevitable, but to encourage the possibilities that existed along with the inevitable. 

We knew he wouldn't be cured, until they perfect the ability to transplant a brain, but we wanted doctors who would fight for his life, just as we were, and just as they would for a "typically developing" (that word "typical" makes me cringe even typing it) child. 

Four years, four months, and fifteen days later the inevitable did happen on November 15 2012. It happened unexpectedly, not that there is ever any way to prepare, but there were several instances that it would've been a little more expected. While it was and is still an incredibly sad, unfathomable to overcome, life-altering experience... we still "believe in the impossible!" and continue to encourage others to do the same, because even though the end is sad it would've been sadder had the "in-between" stuff never happened!

Why? And HOW?

     ~The inevitable did not happen in the womb as the doctors                swore would happen.
     ~The inevitable did not happen days after birth as the doctors          swore would happen.
     ~The inevitable did not happen when he had his shunt placed,          which we had to fight for because the doctors said the risk of            him dying was greater than it helping him, when he was one              month old as the doctors advised would happen.
     ~The inevitable did not happen when he was crying as an infant,      which most infants do, and the doctors told us he was in pain            and to give him high doses of morphine to keep him comfortable      in his "final" days.
     ~The inevitable did not happen when he got a cold and the                doctors said that was a sign of his body shutting down...                    every.single.time. during his lifetime.
     ~The inevitable did not happen when he had one of his few              surgeries to improve his quality of life as the doctors told us to          be prepared for as a possibility.
     ~The inevitable did not even happen when I was preparing for it      to during his final hospitalization with aspiration pneumonia and      toxic shock, when for once the doctors advised that he would be      okay but that it would be scary to get to the light at the end of          the tunnel. (the doctors and nurses at Naval Medical Center              Portsmouth in Virginia are no less than amazing, by the way!)

The inevitable did happen, but it was when his time here was complete... not when the doctors predicted or advised. And doctors should not present a child's diagnosis as a cookie-cutter mold of what is to come, but should instead say:

"Your child has ___(fill in the blank)________ and it means that ____(fill in the definition of said diagnosis)________. I could lie and say that I know exactly what this means for your child, but I will be honest and tell you that I do not know for sure. Instead I will guide you along the way. I will direct you to doctors who will support and encourage you and the decisions you will be forced to make, regardless of how scary and overwhelming they will seem. I will help you get the community support you need to give your child the best quality of life possible at home with his/her family. But I will unfortunately not be able to do is to predict your child's lifespan or the challenges that they will face. Instead, I will recommend for you to allow your child every opportunity to define their own life and ask that you allow them to define their diagnosis while you advocate for and fight for their right to receive the care that any other child would receive, because that is what doctors vow when they take the hippocratic oath."

Hippocratic Oath?? What is this oath?

Hippocratic Oath (Modern version)

I swear to fulfill, to the best of my ability and judgment, this covenant:


I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.


I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.


I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.


I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.


I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.


I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.


I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.


If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.


*This version was written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

Saturday, September 21, 2013

Bee-Worthy Share: In The News

I discovered this story via a Google alert email for hydranencephaly... hopefully I will be in touch with this family to offer some individualized support if they would like, or simply to commend them for the dedication to their sweet girl. They're fortunate to have had an amazing hospital experience with their baby, the encouragement to keep her in their arms at all times... It's not often you hear a story of outpouring love and devotion by a hospital staff... this one has it. Have a tissue handy: 

21 days of love

By: Heidi Ulrichsen - Sudbury Northern Life Staff
 | Dec 06, 2012 - 3:18 PM

Hospital makes infant's short life special

Gus and Angèle Gionest's daughter, Théa, died Oct. 31 at the age of 21 days due to a condition called hydranencephaly. They say Health Sciences North staff went above and beyond the call of duty to make their time with Théa special. Photo by Heidi Ulrichsen.
Gus and Angèle Gionest's daughter, Théa, died Oct. 31 at the age of 21 days due to a condition called hydranencephaly. They say Health Sciences North staff went above and beyond the call of duty to make their time with Théa special. Photo by Heidi Ulrichsen.

Just 21 days. That's all the time Angèle and Gus Gionest had with their daughter, Théa.

The infant suffered in utero stroke, and was born with hydranencephaly, a condition where the brain cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid.

They were told she didn't have long to live.

But the Gionests say Health Sciences North staff did their best to make the time they had with Théa before she passed away Oct. 31 special.

To thank them, the couple recently donated $1,000 to the pediatrics unit in the infant's memory, and presented them with a plaque, which was hung in the pediatrics unit. They also wrote staff a letter of appreciation.

“We knew that she wouldn't make it,” Angèle said. “We just didn't know how much time she would have. To our surprise, she stayed with us for 21 days. We had amazing, amazing care at the hospital during those 21 days.”

Health Sciences North Foundation chair Jim Corless said in a press release the family has touched the hearts of hospital staff.

“We will honour Théa and her family by adding her name to our memory wall in our main lobby of the Ramsey Lake Health Centre.”

Sometimes infants with the condition have abnormalities, Angèle said, but Théa  “was gorgeous.”

Within hours of Théa's birth, the hospital's pastoral worker had baptized her, because they initially thought she wouldn't live much more than a day. The hospital's social worker also visited.

Nurses helped them create a memory box for Théa, with clay hand and foot prints, a lock of hair and other mementos.
 
Even every night when the doctors and the nurses would go home, they would actually come and see her, pat her, kiss her, touch her on the forehead.
Gus Gionest,
father of Théa Gionest

A labour and delivery nurse who volunteers with an organization called Now I Lay Me Down To Sleep took pictures of the infant for the family.

When the baby was five days old, pediatrician Dr. Vijay Kumar asked the family if they'd like Théa to be transferred from the neonatal intensive care unit to the pediatrics unit.

“Up to the Sunday, we'd have to spend the whole day with her, and then leave her to go to bed,” Angèle said.

“We wouldn't be with her at all times. We found that very difficult. When they offered us the room on peds, that meant she was in our room 24 hours a day.”

Hospital staff encouraged the couple to make the most of their time.

“I did skin to skin with her,” Angèle said.

“She slept in the middle of Gus and I. She was always in our arms, per their request. They told us 'Don't leave her in her isolette. Make sure you give her as much love as you can.

“I have no regrets at all. I did what I wanted to do with Thea. I wish I had more time, of course.”

Hospital staff also seemed to be emotionally attached to the baby.

“Even every night when the doctors and the nurses would go home, they would actually come and see her, pat her, kiss her, touch her on the forehead,” Gus said. “Then on their days off, they would actually call the hospital and check up on her and ask how's she doing.”

Some of the nurses even attended the baby's funeral, he said.

Pediatrician Dr. Elaine Blacklock also went above and beyond the call of duty, delivering MRI information to Toronto's Hospital for Sick Kids during a personal trip to the city, Gus said.

“We even got a call from Dr. Blacklock a few weeks ago to see how we were doing,” Angèle said. “Not everybody's going to take some of their own time to check up on us.”

As for how the family is doing now, the Gionests say they're taking it one day at a time. The fact that they have two other children to care for — 12-year-old Maissie and two-year-old Samuel — has helped.

“I think that if this would have been our first child, things would have been completely different,” Angèle said. “We have two beautiful children to keep us going.”


Thursday, September 19, 2013

Thought-FILLED Thursday: We Need YOU!

"Purpose is the reason you journey. Passion is the fire that lights your way." ~unknown



Our mission has shown the greatest success in networking through the use of Facebook:
     
     ~This social media site just so happens to be where I first "met"        the inspiration for me to start blogging (a baby girl living with a s      similar condition called anencephaly), which led me to finding          other families who were on the same journey as I was with                Brayden. 
     
     ~This is where I established my online support group for families      touched by a diagnosis of hydranencephaly, which grew in to            something far more than just a support group... but became an          extended family. 

     ~This is where our foundation has reached more individuals who      maybe would have never otherwise heard of hydranencephaly,        let alone the possibilities that exist for a child who is "born                without a brain". 

Unfortunately, Facebook has some serious downfalls!

I've spent countless hours, in the past 3 years, building up a community around our families through private groups and our foundation's public page (which is nearing the 7,000 likes mark). Unfortunately, little did I know since I try not to focus on the demise of the progress we have made through mounds of hard work, all of that can be instantly wiped out in the event that Facebook decides to shut everything down... and they apparently will do so without notice.

Myself and the dedicated volunteers that help to maintain our Facebook page are always extremely diligent about always treating our supporters with respect by never spamming or blasting their newsfeeds with repetitive posts or pleas for pity, yet I find myself repeatedly reported for a long-list of Facebook violations to include (but not limited to): 

  • posting spam
  • violation of someone else's rights or the law
  • harassment or bullying
  • intellectual property infringement
  • violation of page terms
  • inappropriate language 
  • misrepresentation of another individual
  • and even for threats!

While I have endured a nice reprieve from being reported, this happens so often that my Facebook page has been restricted more often in the last two years than it has been full-access, making it extremely difficult to manage a business and network to reach more individuals and families. 

The looming threat for continuing the punishable behavior, even though I'm not guilty of said punishable behavior, is that I will sign in one day and discover that my page has been "unpublished" with one or more of the above reasons cited. 

When I am "reported" by either an unsuspecting individual that doesn't realize the consequences of trying to remove something someone else shares in their newsfeed, or a well-knowing individual who is reporting out of spite (the latter of the two is the most likely circumstance); my only option is to type an answer in to a box stating, "If you believe that this report was made in error, please let us know." only to never hear another word and be forced to quietly serve my sentence to either not message any business pages, not send friend requests, not post on other individual's walls/business walls, not post photos from my business page, etc.

SO, that's it... a box that says what my profile is being restricted for with a blank for an appeal... but no further opportunity to plead my case or explain a word... not even the option to ask that Facebook review the reports for accuracy or point out the incessant reporting which can likely be directed at a handful of individuals.

In the event that I log on and the foundation's page has been "unpublished", you apparently click an "appeal" button... and you wait, without a fair opportunity to appeal.

That's it! You wait! 

You wait for someone who is likely completely disconnected from your mission, has no clue of the sincere intent behind your business or organization, or simply wants to cause your mission grief and build huge obstacles....

to decide whether you should be given the opportunity to explain the circumstances from your perspective in a plea bargain to save your brand on Facebook... 

I guess. 

In any event, business pages have been, more often than not, simply found themselves being notified that they have been permanently removed without an utter of rhyme or reason.

So, in the amount of time that it takes one individual to click "report as spam" or "report this page for ______"... all of the hard work we have accomplished can be wiped out of Facebook's existence... and our audience will no longer have the leisure of keeping up with our mission and we will no longer have the leisure of using one social media site to raise awareness of hydranencephaly.

SO, I have been working intently on expanding our reach beyond our Facebook page. The options are endless, really, but finding the easiest to use while remaining efficient and effective while proving to be user-friendly for myself has proven to be difficult. 

One step we have made is to start utilizing the MailChimp newsletter service to delivery MONTHLY newsletters directly to your email inbox. Email rarely fails, but it's not a great means for keeping in touch with our supporters on a regular basis and building the lines of communication that our families crave and the communities we are seeking to reach need.

We have a YouTube channel, which is now on a front burner.

We are on Twitter, with intent to tweet more.

We have a Pinterest board, but considering inclusion of an entire Pinterest account.

Essentially, we are exploring every option presented... and need you to help us!

We need to not be held at the mercy of Facebook and it's decision makers who so readily delete pages and groups without a fair hearing. I don't find any level of comfort there, nor do I find any level of assured sustainability, by basing our foundation's major platform on Facebook alone... a platform as shaky and unpredictable as a boulder balancing on a marble in a windstorm. I, myself, do not want the success of our foundation being held in any other individual's hands other than my own... it's too much a large piece of my heart and far too valuable to the families we represent and connect with there.
So, we need you!



We need you to help us share our mission and our vision in your own communities.

We need you to work with us to bring a greater level of awareness to those in your areas, especially in small towns and countries where there is limited access to medical information for families who may be faced with a diagnosis of hydranencephaly.

We need you to learn as much as you can about hydranencephaly by visiting our website, not only to educate yourself but so that you can educate others.

We need you to help us find those families who need peace of mind and reasons to "believe in the impossible" for their child... BEFORE the child is not given a chance to live the life they deserve!

We need you to work with us as you're able, in whatever capacity you are able to construe, to help us on our mission and free us from a reliance on Facebook alone.

We  need you to help us organize fundraisers and events in your community.

We need you to help us connect with medical care providers who are willing to speak up and support us in our mission to bring quality care options to these children; who are willing to go above and beyond, working with families to give their child the best chance at life that they can possibly have.

We need you to help us find people in the spotlight, like-minded organizations and charities, and people who are already making a difference somewhere that will help us stand taller and speak louder about our families and the possibilities that exist despite the prognosis.

We just need you... to do whatever it is that you can to help us, to help our families, and most importantly give each of these children a chance at the quality of life that they deserve.


We aren't asking for a cure... 

We aren't asking for a change in the inevitable (prognosis is terminal, we get that)

But we are asking for a change in the minds of those who hold our child's life in their hands, and we need your help to achieve that.



So, please find us in other platforms by clicking the links below & encourage others to do the same:


  • tweet with us on Twitter
  • check out our favorite pins at Pinterest
  • watch our slidshows and live videos of our kids in action on our YouTube channel
  • write a review of how our mission has touched you and your family at Great Nonprofits
  • follow our families at the Journey of the Bees on Blogger
  • follow our founder, (that's me, Ali Harper) at LinkedIn and help expand our network of like-minded organizations and professional individuals
  • check out awareness merchandise in our CafePress marketplace, we love recommendations for what you'd like to see!
  • subscribe to our MailChimp monthly newsletter, starting this October



Saturday, September 14, 2013

BUZZ: Happy BEE-Day!


Bee-Aware: Community Event

Today GHF is supporting our little bee-buddy,  Hunter, in this year's community event Harrah Day in Oklahoma (event details below)! Wish his family luck in bringing greater awareness to their hometown community by sharing these flyers... 


Harrah Heritage Park
1374 N Church Ave
Harrah, OK 73045
Phone: 405-454-3875

"Come out for a day of family fun at Harrah Day. Begin the day as one of the best parades in the state makes its way through town.  The parade starts at 9:30 am and will begin and end at Heritage Park, where fun-filled activities will be enjoyed throughout the day.  Visit the car show to see beautifully restored classic makes and models as well as modern vehicles.  People of all ages can enter the hot dog eating contest to see who can put away the most hot dogs.  Try your skills at catching a greased pig, or just watch all the action. 

Other events at Harrah Day include a tractor pull, fishing derby, 5K walk/run and health fair.  At Harrah Day, browse vendor booths for unique items and enjoy live entertainment throughout the day.  Many food vendors will be on hand at Harrah Day, and they all offer delectable selections galore.  The event draws to a close with a fabulous fireworks display at 9:30 pm.  After the fireworks, the park's amphitheater will be the venue for headlining performers.  Relax and enjoy the music in the amphitheater seating or bring your lawn chair to listen from anywhere in the park.  With so much to do at Harrah Day, the entire family will have a great time. "

Thursday, September 12, 2013

BUZZ: fundraising opportunity

Have you installed the iGive toolbar button? It is hands-down the EASIEST way to raise money for your favorite causes & we hope that Global Hydranencephaly Foundation is YOUR favorite cause! Our direct link to sign up can be found HERE

Here's how:



iGive really is as simple as it sounds. iGive members can generate donations by shopping at any of our 1,200+ stores.  There are no costs, obligations, nor any hidden fees.

iGive is a free service to causes and members.

SHOPPING: It's all automatic! You don't need to enter any codes, notify the store, or iGive.  When iGive members shop via our special links (starting at the iGive.com web site, the iGive Newsletter, or having installed the iGive Button), tracking enables us to identify the purchases of each individual iGive member with a member ID number.  Causes always receive 100% of the donation amount which is advertised on our web site (iGive.com receives fees separately from the amounts that go to the cause).

You shop the same way as you would without starting at iGive.

When you do start with iGive, our stores automatically send us the needed information (order amount, order date, and your ID number which identifies the user to iGive.com but is meaningless to the online store) so that we can track the donation to each member's designated cause. When you successfully link to an iGive store, your visit will be immediately visible in the You recently visited box.  NOTE: not all coupons/offers you find online or get directly from the store will be valid in combination with iGive.  For coupons/offers you CAN use with iGive, check out the store's detail page on iGive or search our Deals & Coupons tab.

You can create your own list of favorite stores under My Stores.

After being reported to us, your transactions can be reviewed in your shopping report under Stats.  It can take up to 30 days after they've shipped (or travel has commenced) for purchases to get posted to your report, although the average is about 10 days. In-store exchanges may void donations. Please review any posted store exceptions.



Share-worthy

Pardon the language, but this is too great a message not to share!

Tuesday, September 10, 2013

Toy-FULL Tuesday: SleepSack


The great people at HALO allowed one of our families to try out one of their SleepSacks. About HALO:

"Our Mission: Putting Babies First


Our founder Bill Schmid and his wife lost their first born to SIDS (Sudden Infant Death Syndrome).  From this tragedy, HALO® and its mission were born.  For nearly 20 years we’ve been dedicated to putting the health, safety and well-being of babies first.  From our bestselling SleepSack® wearable blankets that help babies sleep safely, to our ComfortLuxe® Sleepwear that helps little ones with sensitive skin sleep more comfortably, to our Healthy Hips™ Diaper Cover that can help reduce the risk of infant hip dysplasia, all we do comes from the core idea of putting babies first. "


Our bee-buddy Joey just so happened to be the perfect little candidate for giving it a try:

From Joey's mom:

"The sleep sack is a great product!  It gives me assurance that my little guy will stay covered all night.  We also use the sleep sack while hanging out and lounging around the house.  He eats by a feeding tube that is located on his stomach so  I love that the zipper zips from the chest ending down at his feet it helps to keep his tube down and out of his face.  The fabric is the perfect thickness that allows him to stay warm, but not get too hot.  I have yet to find any negative experience with this product.  We love our sleep sack!"



Thursday, September 5, 2013

Thought-Filled Thursday: A House Divided

"Our task must be to free ourselves... 
by widening our circle of compassion to embrace 
all living creatures and the whole of nature 
and its beauty."
 ~Albert Einstein

Warning, this could be long!

Every individual is part of a greater whole: a family, a community, a social group, and in some cases a support group.

I have to admit that I sometimes feel out of place in most every gathered group I am a piece of: family support groups, special needs groups, mommy groups, child loss groups, couples groups, etc. That list could really go on for days and I would still stand out as the different one, I just don't feel as if I "fit" anywhere anymore...

But, I never really have.

And you guessed it, that's part of the reason I made my own support network which grew in to this very nonprofit organization.

"Our prime purpose in this life is to help others. 
And if you can't help them, at least don't hurt them."
~Dalai Lama

But no matter where you are on your journey, you have to find some individual that you can lean on for part of the way. It may not be the same individual for every circumstance, it may be one particular individual for only one obstacle you encounter... 

None of that matters. What matters is remembering that you are not alone, regardless how you feel or how it seems to be, you do not have to be alone.

It's ironic that this post was started earlier this week after I attended a gathering at church on the topic of community. I had written until the following points of interest, because I did not have my notes handy to add them. The ironic part is how perfectly fitting this post is with what I will be sharing shortly.

Those points of mention:

~No one walks alone. 
Force yourself to find support that 
will love you unconditionally 
and make you no longer feel alone, 
otherwise you will only find yourself 
falling deeper in to isolation.~

~Those who are living broken & lonely 
are on a mission to make others feel 
broken & lonely as well, 
so that they know they are no longer alone.~

~Even if you can only help a little, 
maybe not even enough for it to be noticeable, 
you are still helping to lighten 
the weight of burden and sorrow 
for an individual facing difficult circumstances 
or troublesome worries.~

Like I always say to those who apologize for not being able to do more: 

"The joy of helping others (volunteering) is that you can do what you can as you're able and you are still making a difference!"

~we are MADE to live in a COMMUNITY~

and last, but not least important:

a REAL community = REAL acts of LOVE

So, what is "love"? Everyone has a different definition of this word and not only that, a different way to love each individual specifically. Confused? Examples: You love your parents differently, or maybe even less, than you love your best friend. Or you love your child a far different way than you love your best friend's child that you also love like family. 

Essentially, REAL love:
  • is giving all you have to give, oftentimes at the expense of one's self
  • is sharing in the hurt of others; not because you feel sorry for them but because you are hurt with them
  • speaks the hard truth with a heavy dose of grace
  • covers a multitude of sins

"The life I touch for good or ill will touch another life, and that in turn another, until who knows where the trembling stops or in what far place my touch will be felt. "


~Frederick Buechner

So, basically: you love unselfishly, sharing the emotions of their joys and sorrows right along with them, and being honest and open with the advice and wisdom you share with them in order to aide in their growth and betterment. Love doesn't end because of bad decisions or circumstances an individual falls in to. Trust may be broken, even integrity, but real love continues to live on.

So, why was this post ironically started before today? It's about community and support and it was totally going to go there with the home run... to the value of support groups and having others who just "get it" to lean on. Instead it's going here, with my jaw on the floor and tears in my eyes:

From my dear friends at Military Special Needs Network:

She is One of Us

By now many of you may have heard the tragic news about Kelli and Issy Stapleton. Kelli is the mother of an autistic daughter who has some incredibly serious and severe aggression and violent behavior. This mother is a fellow blogger. I didn’t know her personally, and only read her blog on occasion, but word of Kelli Stapleton was passed throughout the autism blogging community. Word of her love for her child, the ferocity with which she fought to raise awareness about her family’s situation, the lengths to which she was willing to go to get the help Issy so desperately needed. Kelli, by all accounts, was one hell of an advocate for her child. She was doing it right.

On September 3, something went very wrong.

Tuesday Kelli allegedly attempted to kill Issy and herself.

Her last blog update was incredibly positive and optimistic about Issy’s new behavior plan. What happened between August 27 and September 3 is unknown to me. And in my mind, it’s almost immaterial. I’m not here to judge Kelli. Like her, I have an aggressive, violent autistic child. Like her, I have shouted my concerns from the roof tops – psychiatrists, developmental pediatricians and educators have all heard my concerns about his aggression, SIBs and violence. Like her, I have wept, shaken my fist at society and raged at my impotence to help him.

And that’s just it: “like me.” Kelli is like me. An autism mom. A blogger. An advocate.

She is one of us.

And yet, this.

There is no excuse.

But there are reasons.

And, now, there needs to be change within our community. The special needs community is a house divided. We have anti-vaxxers, biomeds, those looking for a cure. We have staunch vaccination advocates. Those who medicate their children. Those who would never dream of curing their child. And we are all at each other’s throats. Self-advocates versus parents. Autism Speaks against…the list goes on and on for autism and other disabilities, ad infinitum.

No more. Our differences cannot matter any more. We cannot see another family in this same tragic position. We must put our personal feelings aside and come together to support and uplift each other.

No more families without hope.

No more parents without a support system.

No more murdered autistic children.

Let the Stapleton family be a rallying cry to all parents, advocates and organizations. Our need for understanding and support is bigger than what petty arguments we may have had in the past. Let this be the good that results from this horrific tragedy.

If you are a special needs parent, caregiver, or family member – reach out to those around you. Reach out to the stressed-out looking parent at school. Become friends with the other families in the Challenger League. Form a circle of friends. We have to do this. God knows society as a whole will let us drown. No one knows us like us. No one knows our needs, our struggles, our fears, hopes and dreams – except us. Get involved, damn it! Do your part to make sure there are no more stories like this one.

We need friends. We need support. We need understanding. We need the friendly ear after the meltdown from hell.

We need us.

We won’t make it with out us.


Now, this may have been in the "autism community"... the  nature of the community is really irrelevant. I hope you aren't naive enough to think this is an isolated incident, that it was a rarity. This tragedy could occur in ANY community... it has likely occurred in your own, you just simply are unaware. 

The story was shared on the personal Facebook profiles of my friends at MSNN and my jaw literally hit the floor as I read it. Not because I was disgusted with what this mother did, but because she had found herself in a place where she felt it needed to be done: frustrated, in desperation, at wit's end, hopeless, helpless to Issy, and so very alone... and she is not alone in those feelings.

So, instead of sheltering yourself from those who may seem a bit different or who choose themselves to do things alone... please give your best effort to love them and make them welcome in your heart and in the community you are welcomed in. You may not find an ideal fit, but there are individuals who will work to make you fit. 

“The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden.” 

~Johann Wolfgang von Goethe

And most importantly, if anyone reading this ever feels like they're in despair and cannot find their way out or around... when I say, "please let me know if you need anything," or, "let me know how I can help you" I MEAN IT. Don't hesitate. Do not think you are bothering me. Or that maybe I don't want to hear about your problems... you're wrong! If it isn't me that you will lean on, find someone you can. (my number is 573-280-2412 and you can text any time or email: President@HydranencephalyFoundation.org at any time and it will remain confidential) Please consider going out of your comfort zone to be that person for someone who just doesn't know where to look... build your own community and make it a welcoming one.

“What should young people do with their lives today? Many things, obviously. But the most daring thing is to create stable communities in which the terrible disease of loneliness can be cured.” 
~Kurt Vonnegut





Monday, September 2, 2013

Meet the Bees: Bee-ography

While we wait for families to submit some new bee-ographies and information for our "Meet the Bees Monday" series, I will be sharing previous posts from the series. If you have submitted a story before, feel free to share an update for me to link with your previous post. If you have never posted, and are interested, please email your story with pictures to: President@HydranencephalyFoundation.org

From May 16, 2011: Bee-ography Mondays

Starting today I will be sharing a story of one little bumblebee, our amazing little ones with a hydranencephaly diagnosis, every Monday in "bee"-ography Mondays. The stories will be written by their parent and/or caregiver and shared here... a tribute to their life and legacy to the cause. In doing this I hope to help those reading better understand these little lives that have such a huge impact on the ones that love them, while also changing the many misconceptions that exist surrounding this diagnosis. I encourage you to check back every Monday to read these inspiring stories that are sure to help you believe in the power of love and the strength of our little miracles.
Gabby was born June 24, 2009. Her diagnosis of Hydranencephaly came three days after her birth when doctors began noticing tremors and her temperature wouldn't regulate. A cat scan was completed due to these symptoms and that is when we found out her diagnosis.

After we found out her diagnosis, we were not given much hope for our little girl. We were told she would never make it to her first birthday and that babies with this condition live a poor quality of life. 


Gabby not only made it to her first birthday, but she excelled in everything. She ripped out her feed tube and began taking bottle, then at 10 months she began eating solids (far from the doctors telling us she will never feed by mouth). She advanced through the stages of food and even began eating table foods. She loved her food.

 Gabby began walking with assistance at just nine months. She would walk up my chest and she would walk across the floor if you held her under her arms. This was very far from the vegetative state we were told she would be in. Gabby expressed her needs by crying when she was in pain or when she was hungry. When doctors held her she would cry, but as soon as they gave her to mommy, she was fine. One doctor even commented "she knows who you are". 

 Gabby loved playing with toys that had a cause and effect. She played music on her toy piano, and enjoyed toys that you touched a button and it played music. Gabby would not hit the button until the music stopped. One thing we enjoyed the most was hearing her laughter and giggles. She got excited over babies crying and certain toys. 


Gabby was an amazing child who accomplished so much more then the doctors ever said. She proved to doctors that there is far more to a child with this condition and that they are far from a vegetative state. Gabby inspired many of her medical doctors to research this diagnosis a little more. 

 Gabby passed away at 17 months due to her heart stopping after she aspirated shortly after a rescue med was given.