30 Years

It's been a while since I updated this blog.   I'm working 80 hour weeks at the charity right now.   Actually, 7 charities in 7 countries and I'm doing the jobs of many people as so many volunteers stepped down during Covid, we lost staff due to funding issues.  But the research goes on.   

I travel a lot now.  For research, for my other jobs.   I carry wings with me everywhere I go.

The days go by so fast.   I work nonstop.  I'm tired.   I'm disillusioned with people now.   

30 years.... 30 years of CDH.   I hate that CDH and the charity often overshadow you, my love.

I've been trying to avoid thinking about today.   This is a hard year.   You would be 30.  I am turning 50.  I am second-guessing my entire life.  I am wishing I could turn back time and never started the charity and given you every second of every day... and maybe you would still be here.   We both sacrificed so, so much.   But we follow the calling.  Lots of good has been done.  A huge CDH community was created because of you, sweetheart.

But I'd rather have you.   

Would you be tall, like me and your dad?  You looked so much like me but had your dad's build.   Would you have played baseball?   You loved books and cars.   You would've gone to college... engineer, I think.  Would you be married by now?  Would I be a grandmother?  I would've been the best grandmother.   

Words are failing me today.   I just want to go back.  Start over.  Be selfish and focus on one little boy instead of 1000's of other peoples' children.   You deserved that.

I miss you, Shane.   With ever fiber of my being, every second of every day for the rest of my life.   You were all the good in the world wrapped up into one perfect little boy.   Too good for this world.   I love you.   Always, forever, until you're in my arms again.

Love,

Mommy

Another Year

 I posted this on social media (that I use to raise awareness and for my job at the charity):

Another year without my little boy.

His death was preventable. If there had been better and more research, more patch options, more sharing of data, a Standard of Care to prevent his first surgeon from using a ridiculous material (never used before or since), a universal protocol on stabilizing CDH kids, better (ANY) info for us parents so we could’ve made informed choices.... my son would still be here. He was not a severe case.

All these years later, we are still fighting for the most basic of things most other anomalies / diseases have. We are still fighting for awareness, funding and an equal seat at the research table. We are still begging people to see these children.... and still even begging those who see them to help them.

We’ve made huge strides but it will never be enough as long as children are still dying.

My CDH family.... I beg of you.... please, please fight more. Not just for your own child. Not just posting on social media. Please roll up your sleeves and help a CDH charity and help build the community to save these precious children. All of them. Don’t “put CDH behind” you after you move on. Don’t say “I fight CDH every day” because you are raising a child with CDH... I did too. But we cannot CHANGE the future for these children unless we fight for the whole community. We have to have a bigger vision and more hands on board who care about these kids. And please, please don’t just post on social media or say” I support CDH families all the time” because they are your friends.

You send your child to school, you meet other parents, you help with homework, you do play dates, but if you don’t join the PTA, don’t volunteer, don’t work as a community.... you’re not helping to better the school that’s there for your child. Make sense?

And my doctor friends on this FB profile.... please, please listen to parents as your teammates. Use patient advocates. Give patients a seat at the research table. Treat us as equals. As partners.

I say all this not to wag a finger but out of sadness... because so many children are suffering and dying unnecessarily when together, we could stop Congenital Diaphragmatic Hernia so quickly.

I know it’s hard to donate. I have donated years of my life, rooms in my house, miles on my cars, my last penny to the charity at times. Because we need to fight CDH.

I know it’s hard to volunteer. I volunteered full time for 15 years. I had a child at home on life support when I began volunteering. I also ran a company for 10 years at the same time. I had a family. I had tragedies. I had illnesses. I have PTSD too. I grieve. I work all the time. Even now I work several jobs and run the charity.

I’m not superwoman.

I just know these kids need help and so few are actually helping them.

I don’t even have a CDH child here now to fight for since Shane died. I get up every day and fight for your kids.... won’t you join me and the other parents at CDHi who are fighting for your kids - and their kids - too?

Saving lives is never convenient or easy.... but look at this face.... all the faces of these precious children who deserve to grow up.... how can we not fight for them all?

So please, help them. Really, physically help them. Donate. Volunteer. Get involved. For all of these children.

http://www.CDHi.org

But personally...

It's getting harder each year to live immersed in the CDH world for decades after you gone, Shane. You are with me every single day. I'm just getting weary of fighting Congenital Diaphragmatic Herni and begging others to fight too. We shouldn't have to beg. I don't understand how others don't want to fight it collectively to save children.

I couldn't "go on with my life" after your death, knowing that other children could be saved. I'm not made like that. It's hard for me to comprehend that most people are made like that.

I look at your photos every day because my job was created at a charity created because you were born.

I travel around the world now for research for CDH, rare diseases and congenital anomalies and I always have you with me... a pair of wings to physically take you through life with me. 1000's of photos of "you" now. I am trying to get that book done this year.

I am trying so hard to live my life and make you proud but I'd selfishly walk away from the charity and all this work in a heartbeat to have you back, to have never heard of CDH, to have a 28 year old son and dreams of being a Yaya to your children. All the 'what if's" seem to haunt me more with each passing year... all the "never will be's" are so so hard. The reality setting in that I won't grow old with you and a family... it's so hard. Some days it's crushingly hard. I made a lot of decisions in my life to put the charity before myself and now I am dealing with consequences and regrets and jealousy that others never had to make those decisions or give those sacrifices... and they have "normal" lives, families, etc... they could just walk away. I couldn't. It's hard. I just want you back. I want to go back to 1995 over and over again. I literally think about it every day... but I force myself to stop trying to live in the past and to move forward. And my life is GOOD! I am happy! I just grieve and I always will. Because it's not fair and you should be here and the life we planned should have happened. CDH took all that. I will fight that monster until I die. I suppose that's why others have "normal" lives... and why I fight, so they can have those lives. This is why I'm still here. Why I survived the past 2 years despite becoming a patient too. My job here is this. Your job here is this. I hope others whose job this is too will come help fight. I am weary but I won't lay down the sword.

This week, "we" are in Greece.

I always wonder what adventures we would've had if you had lived. I'm trying so hard to have all the adventures you should have had. I'm trying so hard to focus on LIFE!!!

I miss you so much, my love. So very, very much. To the moon and back, I love you always.

Love,

Mommy

Happy 25th Birthday, Shane

25 years ago today..... how can it be 25 years?   I still feel 25 years old myself.

I still remember every single second of the day that you were born.  Every.  Single.  Second.  I relive it every year.   PTSD and mom pride all wrapped into one.

I remember all 6 of your birthdays.   The very best days of my life.   I remember your laughing.  You blowing raspberries happily as you read a new book or played with a new matchbox car that you received for your birthday.   I remember the way you felt in my lap as you played with those toys.  I remember being so happy.  So very, very happy.   A house full of family and friends, celebrating YOU.  That you were here another year.   Our families were so close then.  All the kids so little.   Even though we'd been through a lot already at the time with all your medical issues, we were so very naive of how horrific life could be.  We still had you.  We still believed that nothing truly awful could happen.  We were blissfully unaware that you'd only have 6 birthdays.

You've been visiting my dreams lately.  When I'm completely overwhelmed with the charity work or when I was going through divorce court with your ex-step-dad or when I just got tired and selfish and angry that life hasn't turned out exactly how I had planned... growing old watching you grow up with a house full of siblings and then watching you go to college, marry, making me a grandmother.   I'm not bitter, I embrace that that wasn't the life we were supposed to have.  I understand your purpose.  And mine.  I accept that.  I work hard to fulfill your mission.  But I'm human.  I have good days and bad.  And you've let me know several times this year that you are here with me.

Today, I heard you.  I'm in Texas at a conference, holed up in my hotel room sick instead of seeing other CDH families today.   No sleep after being kept awake by groups of dancers/cheerleaders at 1:00 am in the hotel.   A bit cranky.   Happily single but frustrated with dating.  As usual, your birthday and angelversary weed out the weak guys.  Sitting at breakfast and annoyed that the guy I currently have a crush on hasn't acknowledged your birthday.  Hasn't said a word to me.  Hasn't shown any hint that he actually cares about me, or you.  And another one bites the dust.  Was expecting better from him.  Just a text of "thinking of you today" is not too much to ask, right?   I go through this every single birthday and angelversary.  Because I want the man I'm dating to respect your memory.  As he should.  So years of this nonsense... 3 years of dismissing guys who lack empathy... annoyed.   You'd be 25 years old this year... it's hard.   I do want to curl up in someone's arms and cry.  I'm your mom.  This day hurts.  Your memory has always been the ruler by which I measure a man's character.  No one has measured up so far.  Not even close.   How sad is it that the absolute lowest standard of just a comment, a kind word, an acknowledgment... is too much for most.  No man but your dad will ever truly understand, I get that.  But kindness in the world is so hard to find now.  The world is so much harsher now than when you were here in it.  Maybe it's because the world is harsher... or maybe because I'm more awake to it without you. 

So I'm eating breakfast and wallowing in self-pity and missing you and annoyed at this guy and annoyed that this guy is even a thought when today should be about YOU.   Then.... clear as day, I heard a young man's voice say "Mom, you deserve better".  As if you were sitting beside me.  I'm completely alone.  It could not have been some guy passing by.  No one is here but me.   And you.  

It's not about dating.  It's not about guys.   You are here with me.  You are always with me.   You keep reminding me of that.  And God, how I needed reminding of that today.  Thank you.   And you are right.  I deserve better.

I often wonder what type of man you'd grow up to be.   I think now I know.

Thank you, Shane.  I love you, more than life itself, until the last breath in my body and then beyond.  Happy Birthday, my son.   You still make me proud.    You have always been, and continue to be, the love of my life.

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. 

 

Congenital Diaphragmatic Hernia Awareness Month

This photo was taken in 2008. On the 8th anniversary of my son's death. It may look like a strange children's party at the cemetery, but sending balloons to Heaven is all a grieving parent has sometimes.

I'm posting this for Congenital Diaphragmatic Hernia Awareness Month

I don't have school photos or a graduation photo. I don't make posts about my son not picking up his dirty socks off the floor or playing his music too loud. I've never posted a photo of his first baseball game. I've never had such a photo. I will never have such a photo. You won't see me complaining about having a lazy 23-yr-old who won't finish his college classes or get a job. I wish I could have him here to complain about. I even wish I could still complain about how hard it was to have a sick child or spend nights in the hospital. I'd give anything to have to wake up at 2:00 am for a broken feeding pump or to change a diaper. I'd love to stress about another IEP meeting or spend hours a week in physical therapy, occupational therapy, speech therapy and sight therapy. I miss fighting with the insurance company. I'd love to pinch every penny to afford diapers and gas to the hospital because my ex was out of work half the month because Shane was very sick in the hospital. I'd give my life to hear him cry or squeal or play a musical toy for the 10000th time and grate on my last nerve because I'm emotionally and physically exhausted. I can still sing every song put out by Sesame Street from 1993 to 1999. I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 

 

All I have are visits to the cemetery. I have just memories of worry and pain and hardship and watching my child struggle his whole life. I don't have my child. CDH did that. 50% of families only have memories. 1000's of families just like mine.

Learn more about CDH at http://www.cherubs.org

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/

Happy 22nd Birthday, Shane

So much has happened since my last post in September.  So many good things.  Awards, events and now we are close to raising $1 Million for CDH.   All good stuff.

We are working hard and staying busy but days like today are still hard.

For all of 2015, we are writing open letters to Nicholas Sparks to raise CDH Awareness.   I got the opportunity to meet him, he knows about the letters and hopefully will decide to help us.  Crazy idea?  Of course.  That's what we're best at!  Someone has to help these kids.

This is my letter to Mr. Sparks for today.  It's about Shane's 22nd Birthday.

Happy Birthday, sweetheart.  Mommy loves and misses you always.