Telling Shane's Story on the Annivesary of His Death

17 years ago you earned your wings, Shane.   It's been at least 10 years since I sat down and told your whole story.   I don't know why.  Maybe because it's my job to represent 6000 children born with CDH.  Maybe because it drives me nuts to see people work so hard to elevate one patient's name when so many others are sick and dying too.   Maybe because I was raising you to be kind and humble and I never wanted the charity to be about you.  Or maybe it was simply because it's painful to share so much and I just wanted to keep you to myself.

But more than half of the families at CHERUBS have never heard your story.  Many of the new generation don't see me as a grieving CDH mom too.   Your name and photo is rarely included on awareness projects when they list all their CDH friends' children.  I'm just here to provide a service, run the charity, give free stuff.... to some.  Not everyone thinks that way.   Some remember.  But this problem has gotten worse the past 2 years.  This generation is not like the one that was here when we started, when everyone just wanted to help everyone and no put their child first and there was no social media or cliques or drama.  The cause came first.  Saving babies came first.

So many have asked about you lately though... and I admit, the mom side, the human side of me... it hurts when you are forgotten.  Above all, I am your mommy.   You matter too.   You lived.  You fought CDH.  Your memory lives on.

So on your angelversary, I decided to do a live Facebook video and share your story.  I had no intention of crying, but then I wear my heart on my sleeve.  It is raw, it is true, is our story.  


I love you and miss you my son, forever. 

 

Merry Christmas, my son

 

Incorporating Shane's memory into the office for Christmas.

DISCLAIMER:

Have you seen all the photos in the news about grieving parents incorporating their children's memories into photos? I've become obsessed with them. I think they are beautiful. What do you all think?...

I recently moved and I've been looking at photos of Shane that i haven't looked at in years. It's been emotionally draining. Tonight I just felt pulled to do this photo. I have 10000 other things to do before Christmas but I couldn't shake this so I gave in and did it.

I don't have a little family (no husband or other kids - going through a divorce) so what I do have for a family and where my son's memory is remembered the most is at CHERUBS. This is our office hallway. The tree is decorated with my personal ornaments, including Shane's. This is where his spirit lives on for me. This photo is a way to include him in my current life and raise awareness. It is symbolic. It's not the best graphic quality... I have never done this before.

I have a very dear friend helping with a project similar to this (his will be much better than mine! He's an amazing photographer) and I've spent months talking to him about a way to do this for all our grieving parents. We are working on ideas. How many of you would be interested?

So here it is. Little afraid to post this as there are 3000+ eyes on this profile. I don't mean to offend anyone. Please don't offend me either. I won't deal with negative comments or judgmental comments. I will freely use the unfriend button.

If you're not familiar with CDH and Shane's story, you can go to CHERUBS site at http://www.cherubs.org/ or Shane's site at http://www.shane-torrence.com/

Shane's Story - Chapter 11

(taken from a post written in 1996)

As I write this, Shane will be 3 in 2 weeks. He now wears hearing aids and glasses. I heard him cry for the first time this past summer when we started to use a Pacimuer Valve, a small valve fit over his trach that allows him to make noises by teaching him to exhale through his mouth and nose. He started to crawl after his forth surgery and is "cruising" now. God willing, he will walk soon. The feeding tube in his nose was removed and replaced with a more permanent one placed directly in his stomach through his abdomen. He is starting to eat and drink by mouth and maybe someday, when he can eat as well as he needs to, the tube in his stomach will be removed. He can't talk yet, but he is very expressive with his facial expressions. His trach will be out this spring. He runs the house and gets into everything. He's a stubborn as a mule, but I suppose that's what has kept him here. It's impossible to discipline him and where most children learn not to climb or get into things after they fall once or twice, Shane is so used to pain, that when he falls or we pat him on the butt to keep away from things that could hurt him, he laughs hysterically.

Jeremy now has a new job with better benefits. I have started college and started a support group for the families of children like Shane. Jeremy and I are considering having another child. Shane is doing well and will be at least 4-years-old before we have another one, and the time seems right. Of course we are terrified at the thought of having another sick baby, but the doctors and research have told us that the chance of that is rare. Like the parents of all babies, sick or healthy, we long to do "normal" things; come home a few days after giving birth, breast feeding, and having baby-sitters instead of nurses. We will never again be oblivious to what might happen, but we need to, and want to, have a good birth experience. Besides, Shane is getting a little too spoiled and another baby would do us all good. No matter what happens, Shane will always be a little more special, that's a feeling all mothers of disabled children have. I love him more than life itself and I would trade places with him in a millisecond. He the sorrow and joy in my life, as all children are to their parents, only multiply that by 100 when you have a disabled child. Every step forward and every step back is more noticed and more dramatic. It's hard, but I wouldn't trade it for anything. He has made me a stronger person.

I still get into arguments with doctors and nurses, but I know how to choose my battles. I have alienated quite a few of medical professionals, but I know Shane and his medical history best because I deal with it everyday of our lives. The latest battle was with a nurse who wanted to put Shane in a hospital room with 2 preemies when he was admitted with a virus. After asking to be put in a private room and told "no", I had to go into my "mom from hell" mode to get us moved and within 5 minutes we had a private room. There was no way I was going to subject to those two tiny babies to Shane's virus when they already had their own health problems to fight. Unfortunately, many of us moms with sick kids have had to learn about the "mom from hell" mode. Jeremy has supported me all the way. We no longer go to the hospital where Shane spent his first 10 months.

Because of Shane, and our experiences of having a child with this birth defect, I started a support group. It is the only support group of it's kind in the world. This defect strikes 1 in every 2500 babies. The cause is not yet known. It is not a prejudiced birth defect. It affects babies of healthy families, of parents of any age, of any color, of any religion, and any financial status; no matter how good the prenatal care. Most are found during routine ultrasounds. It can strike alone or with other birth or genetic defects. Fifty percent of babies born with this do not survive. Most survivors of this defect do not have any complications (other than feeding problems) or more than one repair.

I now know, after researching that the "flu" I had during my pregnancy, along with stomach pains, what I then thought was "more amniotic fluid that I had seen in birthing videos", and all the weight gain just in my stomach was undiagnosed polyhydramnios, excess amniotic fluid. Polyhydramnios is an indicator of fetal abnormalities. If my doctors had diagnosed me correctly maybe they would have diagnosed Shane's problems by ultrasound and we could have been prepared and had him at a trauma center better equipped to care for him.

I swore to myself that if I could help it, I would try to prepare other parents of children with this birth defect. These parents need to be better informed so they can make educated decisions for their child's health care. They need to know they are not alone. Most people have never heard of this birth defect, and if they are lucky, they never will. I started this support to help these parents the way Rhonda helped me. I wrote a newsletter in my kitchen, took it to a printer (who donated the service), and mailed it to a couple hundred parents and doctors. In 12 months, we now have families plus hospitals, universities, and research centers across the country and in Canada, Europe and Australia in our membership. The response has been overwhelming; this support group has been needed for forever.

Rhonda and Jenny have each had healthy baby girls since the deaths of their sons. We no longer keep in touch, it's a little uncomfortable for all of us; they have healthy babies but still grieve for their lost children and I still have Shane. They will always be in my heart, and I think they would agree, that our friendships were part of the worst times in our lives, but they are also a part of what helped all of us survive. I will never forget them. I hope the best for Rhonda and Jenny and their new babies, and I know one day I will have a healthy baby, too. I feel it in my heart as sure as I knew Shane was sick. But for right now, we'll be content will our own living, little angel.


(to be continued....)

21 years old

January 28, 2014 should be a day that you go out with your college buddies and get your first beer.  Ok, by now you've probably already had beer but as your mom, let me believe that you'll be having your first one on your 21st birthday.

If you're anything like your parents, you'll make a nasty face and think "yuck, beer tastes awful!" and never drink again.   Ok, another mom fantasy.

But really, all I have is mom fantasies of all the things you should be doing, but aren't.  All the milestones you should be having, but aren't.  Because you're not here anymore.

The past few months watching so many of your cousins and your 2 step-brothers hit so many milestones in their lives has been hard but I am grateful to be a part of their lives and watch them grow.   I'm really blessed to watch so many other cherubs grow through the charity and that warms my heart so much.  I feel like an aunt to them all and so many of them are growing up, graduating, marrying, having babies of their own.  Where did the time go?

So this week has been really hard for many reasons...  Regardless, I can't help but think of you and if you were here and how things would be different but how I am different because things are how they are.   I am grateful that I have compassion for both families of survivors and non-survivors.   I am grateful to know both sides.   I am grateful that you were so humble and so giving to others at just 6 years old.  I am grateful that your father and I had the maturity to not make our world center around you but make you a part of the world and tried to focus and rejoice on normal things, to treat you as normal as possible.  I am grateful for you, my perfect, kind, sweet, funny, loving forever 6 year old boy.   And the peace I have from that, the love you still shower on me... means the passion that I have for the charity isn't about you but because of you.   That's a huge difference and one I am so so grateful for because that keeps us part of something so much bigger than ourselves.  

But as much as I love my work at the charity, as many 1000's of families who have been helped.... the selfish part of me would trade it all in a millisecond to have you back, to have a "normal", boring life.   I'd give anything to buy you that beer, my son.   I love you and miss you, always.   Happy Birthday to my little boy, the love of my life. 

So you want to start a charity?

Me (Shane's mom, Dawn) and Rhonda and Joe - the first members of CHERUBS 19 years ago.  This photo was taken last year.   Never did we think the charity would grow so much or here we would be all these years later missing our sons together still.

Repost from Facebook.   Someday I will write that book.  In the meantime, here is some info that I wrote 2 weeks ago in response to getting a ton of recent requests to help others start charities.   Hopefully this info will help any other parents who happen to read Shane's blog and want to start a charity as well.

I get a lot of requests for help to set up charities.  A LOT of requests.  To set up CDH charities and charities for other causes.   As much as I wish I had the time to help everyone, I just don't.    So I've come up with this:

* Research first.  Is there another charity that already does what you want to do?   Volunteer there instead of doubling your efforts and you can reach twice as many people in need.

* If you can't be a successful volunteer for another charity, you should not try to run your own charity.   If you can't fulfill one duty, there's no way you can fulfill them all.   Go volunteer somewhere else at a different duty.   The objective isn't for you to have "your own charity" but to help the cause, right?

* Be original.  Offer something new.   Have a name unlike other charities for the same cause.   Have a different logo.   Have different services, sites, events, fundraisers, etc.   Bring something to the table, don't just pull up a chair and demand a piece of the pie that others are baking to serve those in need.

* What services are you providing?  How will you fund them?  Who will execute them?  How will you get it started?   If you don't have a purpose and a plan, a desire to help others isn't going to really help others.

* Respect other charities.  Do not plagiarize from other charities, build upon their hard work, imitate them, infringe upon them.  Never badmouth other charities.  Do not compete for donation dollars underhandedly.  Not only is that unprofessional but legitimate charities will distance themselves from you if your mission seems self-motivated and a detractor from the cause in any way.  Professional charities with good intentions work together, not against each other.

* Get a lawyer.   You can file your non-profit paperwork yourself but it's not wise.    It's not just 1 piece of paper to file 1 time.  It's a lot of paper work.  Every single year.   And if you become incorporated, it's even more paperwork.

* Get an accountant.   Book-keeping, 990s and all the attachments are complicated.

* Stay updated on all the non-profit laws federally and in your state.   Know them BEFORE you become a non-profit.

* Becoming a non-profit is not starting a web site or social media page. 

* Do not start a charity because you want a support group for your own needs.  Start a support group.   There's a big difference between the 2.   And be upfront that YOU need support, not that you are stable, competent and ready to offer others support.  Charity is about helping others.

* Do not collect donations if you are not registered with the IRS and your state.  It is illegal. 

* Get a legitimate Board of Directors that knows what that means and will work for the cause.   A BoD is not a group of relatives or your BFFs or even a group of patients or parents.   It's not a clique.  It's not a title, it's a job.   It's also legal and financial responsibility of the charity.

* A charity is not a dictatorship.   It's not 1 person leading.  It's not about 1 patient.   That's not a charity, that's a fan club.

* The larger the Boards, the more accountable the leaders are. 

* Get insurance.  Immediately.

* Do criminal checks on volunteers.   You can't assume everyone has good intentions in this day and age.   Make all volunteers sign contracts to protect your charity and your members from dishonesty or other issues.

* The 5 year probationary IRS period is not optional.  File a 990 every year.  The IRS doesn't care how little donations you bought in.  File a 990 every year.

* Donations do not come pouring in just because you are helping a good cause.   Fundraising is not easy.   Grants don't just land in your lap.  Marketing takes a lot of time, effort, creativity and originality not to mention a lot of blood, sweat and tears.   Charity donations are way down in this economy and even farther down for new charities.

* It's not about you, it's about the people who you are supposed to be helping.  Repeat that daily to yourself if you need to.  Because you will need to every time you run into a brick wall, deal with drama, fill out the same form 20 times, get turned down for a donation for the 1000000th time, are insulted because you couldn't do something for someone, miss a deadline, etc.   There's no room for ego in running a charity.  It's not a popularity contest.  It's not a way to make someone proud, get attention, earn respect, etc.  It's not about you, it's about the people who you are supposed to be helping.

* Carefully weigh your personal life and charity life before you start.   You will sacrifice a lot to start a charity.   Your spouse, your children, your house, any other job will suffer as you sacrifice a lot to start a charity and make it successful.   There is no 9:00 - 5:00 schedule, no days off, no clocking out and not thinking about it.   It's a 24/7 all-encompassing responsibility to take on a cause and help the people who depend on your charity.   Make the decision with everyone in your life.  

* You cannot thank your donors enough

* You cannot thank your volunteers enough

* There's no such thing as enough media coverage.  There is a such a thing as bad media coverage.

* Make your tax forms easily visible to your donors without making them ask you for them.   Be completely transparent. 

* Hire a web designer and graphic artist.   The level of professionalism you display on-line has a direct correlation in the number of donations and volunteers you will get.  

* Pay for annual independent audits.   You owe that to your donors.

* Nothing on the internet is anonymous or temporary.  Conduct yourselves accordingly. 


* If you feel the need to whine on social media or air all your problems like it's a diary... you should not put yourself in the position of running a charity.  Professionalism and maturity must overrule feelings always.  Feelings cannot run a charity and shouldn't be the catapult to start one either.  This goes for spouses, children, friends, etc too... everyone is a reflection on your charity and your work no matter who said it.

* You will have to say no to people.   At some point, probably sooner rather than later, someone will ask for your help and it will not be in your mission or your budget or legal or all the above.   You will have to say no.   There's a 50% chance they will get angry about that and attack/badmouth you.  That's ok.   You are being a responsible charity leader following the laws and doing good.   Smile, wish them well, hope they find what they want elsewhere and move on.   Never risk your charity to try to make everyone happy.  You will never make everyone happy.

* If you work with a medical cause, you may lose people.   You may get your heart broken.   You may get your heart crushed.   Over and over.   You have to be ok with that and accept that.  You have to put your personal emotions aside to help others.  You have to be strong even when it's hard.  You have to sometimes emotionally distance yourself so you don't crumble and can continue to help others.   That doesn't make you cold or uncaring, that makes you able to stick around and be there for others in the future and not be an emotional wreck all the time for your own family.   This job will make you appreciate doctors and nurses even more.

* The good days outnumber the bad.  :)

* Get a medial advisory board if your cause is medical.  Never refer one hospital or doctor.   Never, ever give out medical advice  or allow trading or giving of medicines or medical equipment or promote such illegal behavior.

* Unless you have a degree, you are not an expert.   You do not know it all.   You do not have the secrets to save others, you are not a miracle worker.   You have personal experience and a desire to help others.   Know and respect the difference and the danger in not recognizing the difference.

* Do not expect the people you are helping to donate.   Do not count on their donations or support.   They are counting on you to help them.

* Do not depend on your family and friends to help.  Especially after the first year.   You have to look outside to the public to keep moving forward.

* You will go through a lot of volunteers.   Only 10% of people who volunteer follow through.   Hold on to them.   Thank them.  Appreciate them.  Don't take the other 90% personally.

* Accept that you will live under a microscope.   Every thing you do and say will be critiqued,  How much money you make, where you live, what you drive, what you wear, how you type.   You will be a non-person.   Detractors /competitors/people you couldn't help/media/internet trolls will publicly bash you, slander you, hope you fail, write false reviews, file false claims, attack you and your family and friends personally, professionally and publicly.   They will look for any possible clue to prove that you are an evil, greedy non-profit leader profiting millions off of you cause.   If you work 40+ hours a week at the charity and make a salary - even if just minimum wage - you will be criticized and put down because you should work for free and not worry about supporting your own family.  In no other field but the non-profit sector are people beat down for being successful and working hard and earning a paycheck.   But to continue to grow as a charity at some point you will have to hire someone.  Accept this will happen and toughen up!   Because that's society now and you have to accept it and put on a very hard, tough outer shell.  This is sad, but it's now true that we live in a very derogatory culture that works very hard to kick people down, especially if they try to do good.   Good thing there are good people in good charities trying to bring some sunshine into the world!  :) 

* You better have a deep savings account, trust fund or very supportive and understanding spouse who believes in the cause too and doesn't mind you working 2 jobs (one without any pay and long hours) or is willing to bring in all the household income while you focus on making the charity successful.  Running a charity is not a side hobby, it's a full-time position with or without pay.

* Rome wasn't built in a day, neither is a charity.   It's a lot of work.  A LOT OF WORK!   To do it right, it's a full time volunteer job.   Most charities fold in the first 5 years because the founders grossly underestimated the amount of time and work that would be involved.   Look before you leap.   But know that it CAN be done!   Built upon a solid, good foundation a successful charity can help the lives of many, many people and that's the reason we are all here.  <3 p="">
And in closing on a personal... I want to add a sincere THANK YOU to my husband, Craig, and my ex-husband, Jeremy (Shane's dad) because without their support there would be no charity.   They both put up with a lot and sacrificed a lot emotionally and financially to help others and never asked for thanks or recognition or attention.  Shane was lucky to have such a great dad while he was here and such a great step-dad now that's gone and I was blessed to have 2 husbands who supported my calling selflessly.

CHERUBS

(from Facebook)

Note to CDH parents from me personally....

When Shane died, so many CDH parents told me "you now know both sides and you're head of CHERUBS.  It's like it was meant to be you were his mom".

At first I thought "What the heck?!?  I don't want to be meant to have lost my son in order to run a charity!".   I thought it was quite rude and downplayed my son's life.    But soon, very soon, I learned they were right.

I am so grateful to have had Shane 6 and a half years.   To know what it's like to take care of a CDH survivor, especially to know what it's like to deal with long hospitalizations, complications, having good doctors and awful doctors, feeding issues, disabilities, IEP's, reherniations, delays, allergies, trach, etc.   I don't say "I understand how you feel" to other CDH parents without truly understanding how they feel.  I do understand.  I do know.   I have been there, I didn't read it in a book or see it on-line.  I lived it.   Yet, I am an expert at NOTHING but my own son's medical care and history.  Even though my son wasn't born last year or a few years ago - medical care of these kids hasn't changed much at all, sadly.  I felt guilty too that my son was still alive when others died.  I felt angry that we were cheated out of "normal".  My journey was the same as those today.  But, I will not tell another parent what to do, where to go, what procedure to have.  I never pretended to have all the answers, to have been the almighty mom who saved my son.   I counted every single blessing every single day.  I still do.  I do not share my story often because my focus isn't his story... the charity is here to help ALL these babies and families.   But just because I don't talk about my son and my journey with CDH all the time doesn't mean that I don't KNOW.   It's just more important to me to hear your stories than share my own. 

And I know this sounds wrong, but I am grateful to know grief and to be able to understand and be sensitive to other grieving parents.   Our stories might be a bit different but the pain of having your heart ripped out of your chest and grieving for your child is the same.   Rebuilding your life, questioning everything, anger, blame, guilt, more anger... I know that road well.  I don't just feel some abstract sadness and guilt when someone loses a loved one... I know exactly how they feel and my sadness for them is knowing the road they are now on and the pain that is there every single day and the fact that they no longer even have a hope of "normal someday".   Give me abnormal over the death of my child every day of the week!   Anyone who says that raising a disabled or special child is harder than grief is full of #$&% and self-pity and never lost a child.... God bless them!   I know, I've done both.  It's not apples to oranges and they are both hard - it's night and day and they are both hard but one is full of light and one full of darkness.  I know what it's like to be jealous of those with healthy, living children.  I know what it's like to be so angry at those who don't appreciate their blessings.  I know what it's like to put toys on a grave instead of under a Christmas tree.   I wish to God I didn't know, but I do.

I suppose those people were right.   That it is a blessing that I had Shane and lost him and also run CHERUBS (I say "run CHERUBS" generally as President - there are a lot of people who make our charity run!).

So what's the point in this status?    I've been watching and reading a lot over the past few weeks.   I've seen this huge division develop between survivors and non-survivors families.   I've seen posts, comments, etc that are so insensitive and clueless it makes my head spin.   I've seen know-it-alls offering "hope" to new parents who truly know a drop of water in an ocean about CDH yet they are posting medical advice.  I've even see a few "my family has suffered more than any other family in the history of CDH" posts which obviously isn't setting well with others.  I've seen a lot of anger encouraged in some grieving groups and no real help.   I've seen whole groups of people alienated and angry because someone said something that unknowingly insulted 100's of families on a different path than theirs.   I've seen cliques, groups, pages started up just for survivors, just for grieving.... because so many have no clue that YES we are all able to work together against CDH and help each other and support each other despite going down different roads with CDH.  And YES there is a place where you can go that people DO understand!  YES, we can all learn from each other and support each other.   Because that's why CHERUBS was started.   And that's why with everything in me for the rest of my life I will make sure that ALL families are welcome at a place that does understand.

CHERUBS does know.  We do understand.  We are there for ALL CDH Families.    No one parent knows more.  No one child is more important.   No one path is harder than anyone else's.   Everyone is equal, everyone is important, everyone is valued and everyone can work together against CDH.  Everyone.  Every single child is a miracle, no matter what the outcome.  Every single cherub matters and that's why we are named cherubS.   When we all work TOGETHER and support each other, we learn more, we go farther to help more families, we share stories and experiences that make all of us better parents no matter the outcome we've had.   CDH has bought us together... to me that's a bond stronger than any path to lead us apart. 

So know we are here.  Know there are Reps that care about YOU and YOUR child too!  Know that you have a big CDH family and the door is always open. 

http://www.cherubs-cdh.org

1998