Make the World Remember

October is infantloss awareness month.

Because infantloss, and more specifically SIDS, is such a taboo subject, getting the spotlight for this more than worthy cause is often times a failed mission.

Make the World Remember is an event that is taking place now through the entire month of October.

The goal:  Major media exposure.

As painful as it is to be bereaved; to know my son is in the ground; to have the images of his breathless, cold body flash everytime I close my eyes --- We must be heard.

We must expose every peice of our broken hearts in order that no other mother, father, family, suffers; so that no more babies die.

There currently is no known cause and therefore, no cure for SIDS. 

SIDS takes the lives of aproximately 2,500 babies every YEAR. 

That is 2,500 children who will never grow up.

That is 5,000 parents who no longer feel the ground beneath their feet.

That is 20,000 grandparents who hearts are torn; torn for their suffering children who cannot be blanketed from this sorrow; torn for their grandchild who has died for no known reason.

That is tens of thousands of sisters, brothers, aunts, uncles, cousins, friends who shaken with sadness and tragedy.

Funding is needed for research.  Without a cause, we will never have a cure.

Financial support is needed for families.  When preparing for a baby, we often go broke buying diapers, onsies, cribsets... We don't put away money for funerals and headstones. 

Emotional support for parents/families/friends, especially for SIDS, is rarely found.  Most support groups, if there are any at all, that include SIDS are lumped together with other types of bereavement.  SIDS deaths are sudden, without warning, and offer no explanation. 

We need to find a cause. We need to find a cure.

HOW YOU CAN HELP:

Got Facebook?  Go to our event and click on 'Attending' to show your support:  http://www.facebook.com/event.php?eid=148886511869282

Write to the following media outlets, all of them, as many times as you have time for:

Ellen: http://ellen.warnerbros.com/show/respond/?PlugID=10

Dr. Phil: http://www.drphil.com/plugger/respond/?plugID=9164

Steve Wilkos: E-mail: steve.fan@nbcuni.com or call: 1-888-STEVE-07

Rachel Ray: showcomments@rachaelrayshow.com

Rachael Ray
132 E. 43rd St.
PO Box 543
New York, NY 10017

The View: http://theview.abc.go.com/contact_us

There is Life After Death

"Do not borrow pain from your future." - Scott Roy
This blog entry is dedicated to Karla Roy.

Drowning in our grief, sadness, guilt, we look ahead.

Will tomorrow, next month, next year meet the same fate as I have met today?  The endless tears; my aching heart; my empty arms.

We, often times, don't give ourselves the chance to cope and rebuild our strength because we have already planned for our future emotions.

The sadness is there, and will always be there to some degree.  The anger will come and go.  Its what we do with our emotions that mean the difference between living and just merely existing.  If you plan to drown in your grief, you will.

I found myself, for years, drowning myself in sadness and in anger.

I was angry that I had to bury my son.
I was angry I had to pick out a casket my 4 1/2 month old son.
I was angry I had to arrange a funeral for my 4 1/2 month old son.
I was angry that Aiden didn't have a chance at LIFE; a full life: his first day of kindergarten, prom, getting ground, marriage, jobs, girls, just LIFE.
I was angry that I couldn't protect Aiden from SIDS.
I was angry that everyone seemed to have stopped remembering that he existed.
I was angry that I stumbled upon words when I was asked how many children I had.
I was angry that I didn't take enough pictures of Aiden when he was here.
I was angry that those who, in my eyes, didn't deserve children had theirs and Aiden lay in a cold ground.

Day in and day out, I knew I would wake up and in that split second before conciousness fully set in, I would forget that Aiden had died.  I looked forward to that.  And when reality set back in, I accepted the fact and owned that I was going to be bitter, angry, and sad -- for the rest of my life.

I set myself up for this.  I planned out my emotions.  I told myself everyday that I'm going to be angry; I'm going to be sad; and this is just fine.

This wasn't fine.  This wasn't okay. 

Aiden died.  I didn't.  I had to live.  I owed it to Aiden and to myself to live FOR him.  I owed it to Aiden to cherish his brother and sisters.  I had to LIVE and be the best mother, I could be.

I am still Aiden's mother, only my responsibilities have changed.

Allow yourself to feel these emotions, vent them, and change them; but never own them or plan them. 

Love, Jes

SIDS: A Father's Journey

SIDS:  A Father's Journey by John James

Many times men have a hard time speaking out about grief and bereavement.  Men, often times, feel the need to be strong and end up bottling up all emotion and grief for fear of being perceived as 'weak'. 

It takes a strong man to cope.  It takes an even stronger man to speak out and help others cope.

This story is written by John James.  This is his story, written in his own words.

When it happened, I was just lost.  I had heard of SIDS, but thought "we're good people...it would never happen to us".  I happened to be terribly wrong.  Nobody knows how much I love, yes still, that little guy!  Being in Law Enforcement my whole life, I had a belief in justice.  If I'm a good person, good will happen to me.  I was wrong, again.  The anger came next.  I was just mad at the world!  I had no one to blame, so I lashed out at whoever I could.  Finally, I turned the anger inwards and then my health started to suffer.  I was diagnosed with moderate depression and high blood pressure.  I decided that the one I was angry at was me.  I am his father...I'm supposed to protect him from everything, and I couldn't.  I felt like a complete failure.  I had many suicidal thoughts.  I just couldn't get the images of him on the stretcher out of my mind.  When I went back to work, I was there, but not there.  My mind tended to be a million miles away from what I was doing.  This is not a good thing in my career!   I, also, would "go off" at the drop of a hat. One of my co-workers pulled me aside one day to talk.  He said that while serving in Vietnam, the same thing had happened to he and his wife.  He told me that what I felt was normal, and that he still felt the same thing, only not as pronounced.  He said that time does heal.  It wont make the pain go away, but it does "dull" it some.  He continued to build his family and they were the greatest joy of his life. 
    
One morning, at work, I started to have chest pains.  Being a guy, I ignored it and wrote it off as indigestion.  When I got home, I still had it.  I told my wife that when I woke up I would call the doctor if I was still hurting.  When I woke up, I was hurting even worse.  My doctor sent me straight to the ER.  They decided to run tests, one of which being a stress test.  When I started it, I knew I would "ace" it.  The doctor asked if I could run for 2 more minutes.  I told him that I could run for 20 more minutes!  I got off of the treadmill and the doctor said that my heart was great!  He told me to sit down, and that's when the "fun" began.  I remember telling him that I was feeling "light-headed", then I was out.  When I came to, he was doing chest compressions on me!  Apparently, my heart had just stopped.  I stayed in the hospital for another week, during which, I was fitted with a pacemaker.  It finally appeared to me that the turning the hate and anger inward was just not working out too well.  I ended up having to retire early from work.

Now the good things!

While enduring this ordeal, I have found that I tend to be much more compassionate.  I also found out who my friends are.  The Sheriff's Department that I worked for was a Godsend!  While I was trying to work, they took care of me.  My LT. told me to do what I could and just take care of myself and take it easy.  He always made sure that I would not be in a position to get myself or someone else hurt.  He became one of my best friends!  When I just needed to talk, he listened and didn't try to analyze me.  He and I are actually going to a baseball game tomorrow night.  A majority of my other co workers were the same way.  On my last day, the Sheriff told me that If I, or my wife, ever needed anything he would run to us!  It all made me feel so much better.
Without my wonderful wife, there's no way I could have made it.  We "really" became best friends.  I could look into her eyes and see what I was feeling.  I think that we became much closer.  Oh yeah...she told me about 3 months ago that I was going to be a father again!  For Father's Day, she got me a card that said "to a wonderful father of two!"  That really made me feel better!

It finally feels like I may have turned a corner, but I'll never forget one second of my time with my son. 

Accepting the Unacceptable

What is acceptance?  Acceptance is defined as the "willingness to tolerate a difficult or unpleasant situation."

Understanding facts as reality and accepting are very different.

We know our children are dead.  We without a doubt know death is final; our children won't be coming home again.  We know we will never be able to watch them grow, but instead have to lower them in the ground. These statements may sound harsh, but so is the reality of a bereaved parent.

These facts are without question and after the initial state of shock is over and the full weight of reality has set in, the facts are raw, clear, and final. 

However, this is not 'acceptance.'

For a long time, I thought because I was not in denial about my son being dead, I mean, I knew he wasn't alive, I thought I had 'accepted' this.  I understood the logic and realness of this tragedy, and because I 'got it', I accepted it.  Right?  Wrong.

Acceptance for me could be more defined as peace; an inner peace within myself.   Don't get it wrong, peace is not defined, for me, as happiness or anything near that. 

Peace meant that the constant bickering between emotions and logic ceased.  Peace meant the 'why's' stopped.  Peace meant emotional allowance.  Peace allowed me to eventually let go of some of the bad, in order that I could remember the good and ultimately to make more 'good'.

If you know my story, you know that for years I struggled with anger.  Yes, yes, I know there are certain key stages we all must go through to complete this 'cycle' of grief I keep hearing about.  While this 'cycle' may be a foundation or prediction of things that could occur, each individual is different.  What I can agree on, is the final stage is definitely 'acceptance.'

For me, to find some inner peace, I had to accept the following:

1.)  I will always be sad.  Even on my brighest day, with my biggest smile, I will still stop in that instant and wish Aiden was there with me to share in whatever joy is occurring.

2.)  There will be rough patches.   I will go for days without crying, and without warning I will hear Aiden's name called in a grocery store... and remember; remember that he isn't here.

3.)  Holidays, birthdays, and anniversaries will always be bittersweet occassions.

4.)  I am still Aiden's mother, and have a responsibility to him.  Aiden's life and death were not in vain.

5.)  I will, for the rest of my life, have to share Aiden's story with those who will listen and those who don't want to. 

6.)  I will give myself permission to live without feeling guilt.  Loving my son is not defined by the amount of tears I cry or the hours I spend alone locked in my room.

7.)  And finally, I had to accept that I do not control and cannot control everything.  Whatever is supposed to happen will, and not supposed to happen, will not.  SIDS is not my fault.

Acceptance for me was accepting that my reality may be a little more sad, a little more dark, than those who have never had to bury their children.

Love, Jes

If You're Not Working Together, You're Working Apart

Tragedy has struck;
Your life is scattered;
Your heart is torn;
There are no answers, so nothing makes sense anymore.

Communication seems lost;
You have no idea what to tell yourself,
You have no idea how to console yourself,
You have no idea how you're going to survive this, manage, cope, breathe.

Stuck in the shadows,
Suffocating in your grief,
As 'Blame' and 'Guilt' play tug of war on your logic,
and on your heart.

Its hard to see through this fog of emptiness.

How on Earth can I be there for someone else, when I am drowning myself?

The domino effect after, especially infant loss, can bear great weight on whether a relationship, irregardless of the nature of said relationship, will stand or fall.

The inability to cope together can, in most cases, be the deciding factor.

It is important to remember that everyone deals with grief in different ways, if we're 'dealing' with it at all. 

Acknowledging that you must cope together, is the first step in doing the same.  Saying outloud to one another that we need to work through this together, is an oral contract agreeing that this tragedy will not ultimately tear us apart.

Sometimes, for me, I needed a shoulder and no words.  Sometimes, there is just nothing to say.  At these moments, communication is not lost; silent communcation is needed.  Hold each other.  Allow tears to flow.  There is no shame in feeling sorrow. 

Outside support is key.  Embrace outside support together, as one. 

Never blame one another for this death.  Anger is a huge part of the grieving process.  However, I believe, the blame-game can often lead to irrepairable damage.  We all say things when we're angry, but blaming one another when often times we already blame ourselves, is below the belt and wrong. 

Coping together and trying to understand one another is key in any relationship you may have.


"When I am strong, I will carry you; when I am weak, please carry me." 

What to Expect When You're Expecting... After a SIDS Death

The decision to have more children after the death of my son was an easy one.  I have found in working with parents, that often times the decision is easy and in black and white; its usually either a 'yes' or a 'no'.

For me, the answer was NO! 

The thought and fear of going through this again was enough to not want to have children again.  Afterall, I had Caleb.  Caleb was over a year old now.  He was safe from SIDS... right?

My paranoia overtook me.  After the initial stages of grief, and when I finally started getting out of bed again, I found myself shook with anxiety.  I began checking on Caleb, sometimes every five minutes or so.  I needed to make sure he was breathing.  Naptime, I would sometimes sit next to him with my hand on his belly to feel his chest rise and fall.  I guess, somewhere in the back of my mind I thought if it was going to happen again --- I was going to catch it; I was going to save Caleb; I was going to beat it.

Night-time- forget about it.  Night-time was always the worst.  I checked on Caleb relentlessly.  I tried to stop the paranoia from overtaking me. 

When the inner confines of my mind would begin to nag: "Go check on Caleb, Jes.  He's not breathing."

I would really try to talk myself down: "Jes, you just checked on Caleb 5 minutes ago.  He is fine.  He is breathing." 

Paranoia would again overtake my rational thinking: "If you don't check, this could be the one time you didn't check and something could be seriously wrong.  He's not breathing, Jes.  He's not breathing!  GO CHECK!"

I would check again.

Sometimes, when I would check, Caleb would sleep so soundly that his breaths appeared very shallow.  At those times, I would wake him up purposely just to make sure he was okay. 

After exhausting myself to the point of passing out most nights, I often woke up in a panic; jumping to my feet and running to check on Caleb.

Since losing Aiden to SIDS, I have had two additional children - my girls, Adia (5) and Maia (3).

Looking back the paranoia I went through with Caleb was nothing compared to what I went through with my subsequent babies.

I have encountered Moms from both sides of the fence.  Some like me, too scared to have another child and go through this horror again and some who couldn't wait to have another baby, to somehow fill the void, to feel like a mother again. 

First and foremost, it is a personal decision to have another child, especially after such a traumatic loss.  I believe, however, when you're in those initial stages of grief, your mind is still stuck in a fog trying to comprehend what just happened.  And unclear mind shouldn't make lifelong decisions and commitments.

As a grieving parent, yes, we are left with a void; a hole in our hearts.  We are left with an indescribable lonliness and helplessness.  Our logical mind says to fill that void.  What better way than try to replace or duplicate what we've lost, right?   Wrong. 

The reality of it is Aiden died.  His memory lives on in my heart, of course --- but Aiden died.  Having another ten babies, will not replace that void or heal your heart. 

When making the decision to have another child, this reality needs to be accepted.  If you bring a new baby into the world, into your world, where you have not fully dealt with or learned to cope, is irresponsible and unfair, in my  opinion.  This may sound harsh, however, this new child is entitled to their own identity and a life with parents who have the time and the ability to love them unconditionally. 

Aiden died June 15, 2004 --- I had Adia October 24, 2005.  Whether my pregnancy was an accident or subconciously purposeful, I was pregnant. 

My entire pregnancy, I felt in a safe.  Weird, right?  I feared the day I would have to give birth and bring her home.  I feared SIDS.  I missed Aiden.  I had no idea what I was in for.

I delivered Adia via C-Section on October 24, 2005.  She was stunning.  The paranoia, however, set in almost immediately.   When she was delivered in the operating room, she didn't cry right away.  I freaked.  I yelled for the doctors to hold her close to me so I could feel her chest rise and fall. 

I refused to allow them to take Adia to the nursery.  I just knew they weren't going to watch her.  They weren't going to make sure she was breathing. 

I refused to take pain medication after the C-Section.  I couldn't fall asleep.  If I did, who was going to make sure Adia was breathing.  I had to hold her, or leave my hand on her belly.  I would deal with the physical pain, but I couldn't fall asleep - or she would ultimately die, I just knew she would.

Jaundice is common in babies.  But for me, jaundice felt like a death sentence.  In fact, the day after I took Adia home from the hospital she had to be brought to the lab to get bloodwork done in order to test her blood to see if the jaundice was getting better or worse.  It was at this point, looking back, I realized just how ridiculous my paranoia got.

I fell to my knees, hysterically screaming at the lab technician:  "Is she going to die?!?! Is she going to die?!?!?!"

My children are now 8, 5, and 3.  While I hve learned to contain and deal with my paranoid thoughts, for the most part, they are still there; and yes, they still sometimes eat at me.  I still check to see if their bellies rise and fall before I go to bed, yes, even my 8 year old. 

Having a baby, as we all know, is a huge responsibility in its own respect.
Having a baby, after a SIDS death, is more than just responsibility; it can be a battle.

I don't like to deter anyone.  I'm glad I have my girls.  I'm glad I got pregnant unexpectedly with Adia.  My girls have shown me that all babies don't die; my girls have given me a second chance; my girls have given me two more reasons to wake up in the morning. 

But having a baby, after burying a baby, is not all sunshine and roses.  Prepare yourself, deal with your grief, and be in a positiion where you can give all of yourself to your child.

Love, Jes

Shoulda-Coulda-Woulda: Guilt and Blame

Guilt and blame are two core ingredients associated with grief.  They are two of many vicious emotions which call into question they very essence of who we are as people, as parents.  Allowing guilt and blame to exist can eat away at who we are, and shape our futures into who we will be.


Let me start out by saying this:
SIDS is NOT your fault. 
SIDS is NOT the result of an imperfect parent. 
SIDS is NOT the result of you not loving your child enough. 
SIDS is NOT the result of abuse, neglect, or carelessness.


Not to draw any credibility away from pain endured after losing an infant (or child) to disease, accident or other means of death, SIDS, as you know, can be very different.


There is no known cause for SIDS.  There are no warning signs.  There is no cure. 


SIDS leaves more unanswerable questions, which, in my opinion and through my experience, can leave a parent to ultimately lay the burden of guilt on their own shoulders in order that blame can be placed somewhere, anywhere. 


For years, my mind could make no sense and could draw no logic from this unanswerable pain.  There were no signs.  Aiden just simply, died?  My heart and brain could not process this.  I blamed myself.  The ‘woulda-shoulda-coulda’s’ rang deep and constant. 


Guilt and blame, in my opinion, are our minds way of ‘auto-correcting’.  If there is no foreseeable and logical answer, it must be my fault; I must have done something to cause this.


Absolutely wrong. 

“Many researchers and clinicians have a strong sense that the SIDS process, whatever it turns out to be, cannot be easily interrupted or stopped. However, it is important to always perform resuscitation efforts, because a SIDS diagnosis cannot be made at the time the baby is found not breathing. If a baby is revived, it is generally found that the baby temporarily stopped breathing due to recognized medical problems(i.e. apnea) or an Apparent Life Threatening Event (ALTE), an extended period of apnea.”  - SIDS Resources Ray of Hope:  http://www.sidsresources.org/ParentInfo.HTM

As we all know, it takes months to get a SIDS diagnosis/COD rendered.  SIDS can only be determined after every other cause of death has been ruled out and after a full autopsy has been preformed. After the reading I have done, I am of the firm belief that once the SIDS process begins, efforts to make it stop, go unheard.

Even if I had checked on Aiden at the very moment he took his last breath, it wouldn’t have mattered.  I would not have been able to revive my son.

Throughout the years of self-destructive and self-inflicted torment, I have learned, looking back, that if you tell yourself the sky is purple… after a while, it’ll appear that way.
If you blame yourself and allow the guilt to override fact and truth, in your mind, it’ll appear that way.

On the flipside, if you remind yourself that it isn't your fault with your rational mind, that guilt will begin to somewhat dissipate. 

Having a glass of orange juice the day that your child died, instead of having milk, wouldn’t have changed the events that unfolded that day.

I realized that blaming myself wasn’t going to bring Aiden back.
I realized hating myself wasn’t going to bring Aiden back.
I realized reliving that day over and over again in my mind, wasn’t going to allow me to change the past.

Moving on doesn’t mean forgetting Aiden, his memory, or even that day, June 15, 2004.

Moving on, to me, means that I had to stop concentrating on tragedy of Aiden’s death and start celebrating the 4 ½ months I had with him; celebrate the memories I have; celebrate his smile.

Love, Jes