Honestly Remembering My Son - Starting a Charity the Right Way

There are lots of ways that I remember Shane and try to honor his memory:

I'll spare you from the literal 1000's of photos I'm in doing charity work.  You're welcome.  :)

But there is one thing that I'm most proud of in the way that I'm remembering my son... and that is that it's been honestly, without using or harming anyone else.    Let me be clear... the charity I run was not started in his memory.  Or even his honor (he was still alive then).   It wasn't started so I could make friends or have support.  It was started for other families coming down the same path of CDH.   It was named for babies that earned their wings.  Now, there are some great charities I work with started in memory of specific babies but their focus is helping others - not exalting their child.  It's about helping families other than their own.  That is what a charity should be all about.

If you want your own mighty oak tree... plant a seed... don't rip a branch off an existing tree and try to plant a splinter. That doesn't make you an arborist, it makes you a vandal and a thief.

A tree has roots, it's tended out of love and care by many, it provides shelter and shade. Who are you to rip branches off of what God has grown, what so many receive shelter from... just so you can scream "I have a tree too!"?

That sounds really negative, doesn't it?   Well, I need to vent a bit and clarify a few things.

Let me explain... in the 19 years I've been at the charity, we've dealt with this 7 times to include about 2 dozen people.   This is how a person starts a group / charity the wrong way, by taking advantage of another charity.   I truly believe no one starts out to do this but somewhere around Stage #3, something happens to people with weaker self-esteems / big egos / mental health issues / know-it-all mentalities or those with an inability to work with others on a team.  I'm not diagnosing anyone or labeling anyone, I'm just trying to make sense on why anyone would want to hurt a charity instead of taking a more professional, mature and positive path to start their own group / charity the right way as a grassroot effort.  By grassroots, I mean starting with a seed, a thought, a plan and working hard to start from the bottom up.  Not ripping up someone else's grass and planting it in your own yard.   

So after all these years and all these experiences, some of us agreed that it's the same routine every single time when someone goes over the edge.  The same predictable, barely varying, heart-breaking routine in stages:

1. SUPPORT - A new family joins the charity, we help them as much as we can.  Whether it's emotionally, financially or both.  We are there for births, funerals and midnight calls and texts from ultrasound rooms.  Our hearts and souls are open to help 1000%.  Here's where most families stop.  Only 1% go to Step #2 and volunteer.
2. VOLUNTEER - One of the parents volunteer.  They sign 3 contracts -- a Volunteer Contract, a Conflict of Interest Contract and a Confidentiality Contract.  All 3 are legally binding and they sign them voluntarily, agreeing to all that's in them.  Here's where all good volunteers stop.  They work hard and give immensely of their time and hearts to help other CDH families.  They are angels on earth.  If they need to step down, they do so professionally and politely and remain active members of our charity.  Only about 15 out of 200 go to Step #3.
3. POPULARITY - They make lots of friends, focusing on socializing and being popular on social media.  Start to collect friends and fans from other volunteers, pages, groups, etc. Increasingly need and want attention, recognition and praise to a much higher level than other volunteers.  The cliff phase.
4. WITHDRAWL - Do some volunteer work once in a while, spend more time on social media.   Projects sit by the wayside, families are neglected.
5. PLANNING - Accumulate charity information, data, behind-the-scenes knowledge. Hoard it, gather more.
6. EXCUSES - Stop doing any work at all for the charity while they focus on their own projects.  Stall for time to gather more info and data.  Blame others for not getting work done.
7. THE TRIGGER - Steal or do something equally bad to the charity / Whine about something they want and don't get from the charity (paycheck, free items, higher position, etc) / Throw a tantrum if we won't bend a rule for them / Focus more on promoting themselves.  Something over the top to cause a lot of drama and cut the cord to our charity.  We do not publicly comment on any of this, we continue to do our work helping CDH families.
8. DEFENSE - A leader tries to talk to them about their volunteer duties (that they freely volunteered to do), they get defensive, often attacking.  They immediately quit without discussion or they do something drastic to have to be removed.  There is no personal responsibility at all.  At this stage, very few people have any idea that any of this has taken place at all and we've sheltered other volunteers, members and the public. We do not publicly comment on any of this, we continue to do our work helping CDH families.
9. THE VICTIM -  They tell anyone and everyone how they have been "wronged" or "attacked" and need to seek validation.   Public attention is sometimes deeply sought after in this stage.  They can be loud, publicly hurt, bash the charity and people in it, leave bad recommendations, file complaints, write a blog.  Play victim and demonize the very people that helped them when they needed it most.  Re-write facts.  Rant about being unappreciated even if duties were left for months undone and families lost services.  Demand appreciation for doing 1 out of 10 duties that the charity and families counted on being fulfilled and exclaim we should be more grateful they did that 1 thing.   At this stage, anger, justification and defensiveness runs rampant.   There is never any personal responsibility, apology, sincere regret in the loss of services or thought to the families or charity or community as a whole.  Professionalism and maturity are often thrown out the window.  Declare things like "You can't stop me from raising awareness" or "You can't be the only charity" - none of which is true or has ever been said or written once by anyone at our charity.  If any family or anyone else calls them out on the drama or dishonesty, piercing private messages ensue.  Name-calling is a favorite tactic to try to personally hurt others at this stage and later stages.  Character and reputation assassination of our charity and it's leaders seem to be necessary to justify their behavior.   To do and say all this, they must break legal, binding contracts that they signed, promises they made and dismiss any integrity in upholding their word or the trust others put in them as volunteers for a children's charity - often breaking confidentiality to others to get them to bash us so their reputations stay clean publicly.  At this stage, our charity pulls back from these people and their newly formed groups of supporters to distance ourselves and CDH families from drama as any professional organization would.  By doing so, we are always accused of "excluding" or (hypocritically) "asking people to take sides" - neither of which is true.  They egg on and try to cause more drama, stalking our pages, groups, forums hoping that our charity will ban them so they can further play victim.  We do not publicly comment on any of this, we continue to do our work helping CDH families.
10. COMPETITION - Without fail, within 30 days (usually just days), they start their own group or volunteer for a group who has already done this list of bad behavior.  But they use our members, information, contacts, set up, events, fundraisers and usually our graphics too (all but logos are not trademarked and free to use - but they never give us credit for our hard work).  Their own CDH day, their own CDH color - they justify this by saying "The more CDH awareness, the better" and that plays well in the ears of new parents they rally.  How many days, colors and ribbons are there for Breast Cancer, Autism, etc?   If anyone points this out, it's met again with "You will not stop me from raising awareness!" sometimes with foot stomping and a pouting bottom lip.  They stalk our social media and copy any new ideas, events, fundraisers, etc that we create for their own group.  Lots of cryptic public posts, hoping people will put the pieces of their warped puzzle together and support them and view the charity as a big, bad bully.   Splinter the community.   We do not publicly comment on any of this, we rarely even have any communication with them at this point.  We continue to do our work helping CDH families.
11. BULLYING - The really unstable ones do truly awful things like; Trademarking things / threatening people / stalking / harassing / writing blogs against people /  being loud, obnoxious and completely untruthful on social media to try to rally others to bully and hate too / running around social media deleting anything nice they ever said to or about us to hide the fact they were ever involved with us in a positive way / creating fake children, trying to access our forums, listservs, groups, get our materials / false complaints with the IRS, state, etc to try to shut us down / fake reviews to harm our charity / contact charity workers' family, friends, employers to harm them personally / verbal attacks in public places at CDH event / crashing our charity events.  Stalking and picking apart our charity and it's leaders hoping to find or contort into something awful to make CDH families leave us in droves and run to them.  Meanwhile, often they are doing all sorts of illegal, dishonest things that no one ever calls them on that they see nothing wrong with.  They are bashing a charity and other parents who helped them and they do it publicly - bullying without naming.  While saying they are "no drama" and "want to work with everyone" and "don't want to divide the community".   Hypocrisy is very self-serving.   They refuse to return items owned by the charity.   They have all sorts of "great ideas to change the CDH community" that they didn't have as volunteers for another charity.   They tear down others to lift themselves up.   They bash our charity if we ask for items returned.  They attack us if we distance ourselves.  They attack us if we try to fill their now empty volunteer positions.   They only care about their own reputations and popularity.   They will attack any of our volunteers or all of our charity if necessary.  Any attempts we make make to protect our charity are met with attacks.  They call our members and volunteers stupid "sheep" unable to think for themselves if they want to work with our charity or follow common rules of professionalism and courtesy.  They e-mail our volunteers trying to get them to leave us and join them.   They e-mail and message and attack our volunteers and criticize our charity.   They behave like witch hunters and Pied Pipers dividing, collecting and ultimately destroying the community for their own motives.  Yes, that all has happened.  And yes, these people are now self-appointed CDH "leaders" .  Yes, they all once were very involved with, supported and volunteered at our charity and once only had glowing, wonderful things to say about our charity and leaders.  No, no one at our charity has ever, or would ever behave in such a manner so unprofessional and disrespectful to our children and the whole community.  We do not publicly comment on any of this, we never have any communication with them at this point.  We do not publicly correct the things they post.  We do not criticize them or try to redeem our own reputations.  We take the high road and ignore them and say professional.  We continue to do our work helping CDH families.
12. SAINTHOOD - To overcome all the drama they have created publicly, they now are the "victim martyr, rising from the ashes", "escaping the hands of the bully charity who will now save other CDH families from a similar fate".   Please note that all this time this drama is occurring they are in an imaginary one-sided war as we are not participating or responding at all.  We simply asked them to complete their volunteer duties and respect the rules and contracts they signed.  In most situations, we haven't spoken to them since.    They post repeatedly how they're not about drama as the public show continues. They post repeatedly they are not competing with anyone and don't want to splinter the charity yet bash our charity and start their own.  Their words and actions frequently conflict but they push positive agendas publicly.  They join with others who share these morals and have done this to our charity and promote "working together".  There are lots of disclaimers before anything they say - "this is not a competition... but support MY CHARITY!".  They promote, promote, promote themselves, their experiences, their children, their knowledge, their backgrounds and almost campaign to convince CDH families that they know more, are more, can offer more and therefore have every right and expertise and should be a leader of their own charity.  Re-write history and pretend they didn't get information, members, support from our charity and did it all on their own single-handedly.  Blast anyone who reminds them of that fact.  Threaten our charity with legal proceedings if we post any past newsletters or photos of them at our events that might prove they aren't truthful.  Smile, socialize, support as many CDH families as possible for public persona often going obsessively overboard to try to impress others with their deep compassion and commitment.  We do not publicly comment on any of this, we never have any communication with them at this point.  We continue to do our work helping CDH families.
13. ENTITLEMENT - Expect our charity to continue to include and support them or they will further bash us.  Expect our charity to not hold them accountable to the legal contracts they signed to protect our charity.  Expect our charity to treat them as equals.  Expect our charity and volunteers who know the truth to smile and be quiet and be professional.  Expect our members to rally around and us to publicly support their projects "for the sake of CDH Awareness".   Expect to be included and welcomed into our programs and events as if none of the above ever happened.  We do not publicly comment on any of this.  We continue to do our work helping CDH families.
14. RESULTS - Not more awareness or services.  Not new ground.  Not more research.  The community is fractured and opportunities to push awareness, research and support farther and faster as a whole community are lost.  The children suffer longer.

Yes, 7 times over the past 10 years.   A variation of things listed about.   It's all so predictable by now that it would be funny and a good reality TV show if it wasn't so sad and detrimental to critically ill babies and their families.   You're probably thinking "After the first time, they were stupid to be used again.  Why didn't they stop this?" and that's a good question.  One I ask myself a lot.  

The truth is, we want to believe the good in people.  And if we spoke out, that would push their bully agenda.  If we sued them, that would push their bully agenda.   And we are professional.   We're not going to subject new families to all that negativity and drama while their babies are fighting for their lives.   And they take advantage of this.  

Our charity continues to do the only thing we can do... not comment even if it means letting people believe whatever they want to believe.  Stay professional.   Not feed the drama.   Not help them splinter the community.   We take the high road and hope families see that and figure out that people who cause so much damage to a charity and other families must have something they want to gain from the destruction.  What is it?  Competition?   Donations?  Volunteers?  Support?   Asking families to take sides by attacking one party?   Our charity has no need to damage, no desire to gain anything destructively.   We have no time to compete with anyone and no need to compete with anyone.   We are here to build the community up and help these children and families.  Period.  

But do you know how hard it is for not just me, but all of our Boards and volunteers to see this happen and say nothing and be professional and protect CDH families from drama?   We have 75 to 100 people who work behind the scenes and know what's going on each time.   They have 1 person usually running their show, maybe a few more, and they post awful things on-line from snide comments and digs to full on social media wars.   I'm pretty darn proud our volunteers and leaders keep their cool under such blatant nastiness!  But it is HARD!  They insult our charity - they insult all the people who work hard here to help families.   I see the comments people make... people I consider "friends".... our volunteers see the bashing... people who have no clue what is really going on chime in and unknowingly assist in bullying others.  We all have feelings too.  We're all CDH families too.   People don't stop and think that there are other people on the other end of their comments and their words have power too.  It's very sad how so many people get wrapped up into drama, gossip, even outright lies... and attack those who helped them... just by jumping on a very negative bandwagon driven by a very careless driver.

People we trusted, cared about, supported, bought in to help all CDH families.   Ego gets the best of people sometimes.   Sometimes causes become opportunities to some.   Sometimes people can't see past their own noses.  Sometimes good deeds do go unnoticed and unappreciated and punished.  Sometimes we trust the wrong people.

(Anyone out there with bad intentions... don't get any ideas unless you want to speak to our attorney.  Enough is enough.) 

These situations are sad all around but the saddest part is that if they had taken the high road, if they had come to us honestly and sincerely wanting to start a CDH charity, we would've helped, supported and encouraged like we have done with dozens of other charities for CDH and other causes.  By trying to take a short cut and using our charity instead of doing the hard work, they have cheated the whole community and themselves and hurt a lot of people who cared about them and their children.

They each made the decisions to do the things they have done.  I'm sure many of these people will bash me more for this blog post... guilty people do tend to get defensive when the truth is spoken.  That speaks more to their character than mine.   I will not choke on the truth to protect people who behave this way towards a charity.  

I won't post about all the hurtful things done to me and my family.   Or the countless tears I've cried being hurt by all this.   But I will say that if you think bullying only occurs by mean teenagers, you are wrong.  

But at the end of the day, these are the people who get hurt the most:

 

The children

 

What I am proud of is that never once did our charity do this to anyone else.  We never used anyone as a stepping stone, never took advantage of people who helped us, never splintered anything.  We're not a splinter... we're a big, mighty oak that started with a seed and grew tall with lots of hard work, compassion and integrity.   

I never had support when Shane was a baby... there was no charity at all (why ours was started).  No one gave me a newsletter or pointed me to a parent forum.  There was no financial help to support my family.   There was no where for me to go to make friends with other CDH families.   And if there had been, I would've been so thankful and grateful that it would never occur to me to hurt the very people that helped me.   And I certainly would never have put myself or my family before all the community to want to do anything but try to rally everyone to work together.   I would never, ever bully a charity or people who helped me in my darkest hours or throw a temper tantrum if I didn't get my way and splinter up a community.   That's how I was raised, what I stand for.  And what I was raising my son to stand for too.

This is the only post you'll see by me about this issue anywhere - on my son's private blog.  You don't see any names of people or groups.  You don't see any posts at the charity at all or on social media.  You don't see any posts on my personal social media.   You don't see us trying to splinter the community or ask people to take sides.  You don't see us trying to compete with anyone.  All you see is us distancing ourselves from the drama, working hard, continuing to try to help CDH families.   Because at the end of the day, no matter what words are said or typed... actions speak louder.   

What's more important is the fact this is just about 2 dozen people with too much time on their hands and a whole lot of negative energy.   We have helped over 4700 amazing, wonderful, appreciative, honest, caring, compassionate families who see that we are a charity here to help all CDH families, not one to be used by their 1 family.   That is why we are here.   That is why we keep going.   

So why post all this?  Because the truth needs to be said.  Because myself and our charity take a lot of mud slinging so that others can step on us.   Because my son's memory and all these families in our charity deserve better.  Because CDH families deserve a united community with 1 mission and no personal agendas.  Because so many charities for so many different causes are dealing with the SAME issues and same bad egos since the arise of social media.  It's not us.  It's not our cause or community.  It's a global issue that all non-profits are facing more and more.  Because it's wrong and someone has to say so.  Because selfishness serves no one, even if intent is to "help" the means do not justify the ways.

I wish no ill will towards anyone.  I do not want "revenge", I have not filed any complaints or sued anyone (yet, don't push me).   I have not posted one name or group here.   I haven't posted the volumes of information and proof of all this negativity.   I'm not here to splinter the community, I don't want to badmouth anyone.  Our charity has helped other charities start, we work with the amazing groups in the Alliance of Congenital Diaphragmatic Hernia Organizations who planted their own seeds, our success speaks for itself.  What I do wish is for peace.  For mature, professional, honest behavior from adults I and the charity once helped and deeply cared about.  For anyone who wants to start a CDH charity to do it the right way.   For everyone to make our children proud.  Like all the charities in the Alliance of Congenital Diaphragmatic Hernia Organizations, who started their charities the right way, the honest, hard-working, plant-your-own-seed, work-towards-a-bigger-better-CDH-community way.

I am posting this myself.  Not the charity, not on behalf of anyone or representing anyone.   This is not an official post in any manner.  This is one very dedicated, very tired mom speaking up for myself, people I care about and for what's true and right.

And at the end of the day, I can sleep well knowing my son is looking down on me smiling, proud of what we made from nothing but love.   That our charity isn't about just him and it's definitely not at all about me.   It's for all CDH families.   1 pure mission.   And I'm happy that 19 years, the mission is still pure and that mighty oak is still growing tall.