Friday, July 26, 2013

Couldn't have said it better.....

Someone shared this blog post in a group I am a part of and I just could not believe how much this author clearly articulated what I feel somedays.  I am going to share parts of it here and add some commentary as well.  I only ask that you please just keep an open mind as you read it and really take to heart what she says (and I echo).  This is not a journey we'd wish on anyone but perhaps it can be a bit easier when those around us really listen to what we say and what we don't.  
How to talk to a parent who has lost a child. From someone who has been there.

The soul destroying agony of your child dying is only truly known and understood by those who have endured it. Four years on, I still glance down at my daughters grave in disbelief. Visiting my child’s grave is surreal. It’s almost like I’ve vacated my body and I’m watching someone I don’t know standing there putting flowers down.
Is this really my life ?
Only a parent understands the powerful bond you have with your child; that absolute undying love you have and that monumental desire that roars like an open fire inside you to protect that child at all costs. It is openly said that a parent will lay down their life for their child, but it is not until you have your own that you truly understand these fierce emotions. Parenting is wearing your heart on the outside of your body. Whatever you imagine it might be like to have your child die, multiply that by about a trillion and you’re probably not even close.
On the surface it appears society is accepting of this unbearable sadness and people are supportive and open to talking about it. However, in my situation I’ve been surprised by people’s genuine kindness and empathy as much as I’ve been repeatedly shocked & disappointed by their lack of it. It’s necessary for bereaved parents to be able to talk and, most of all, be able to talk openly. I’ve found it’s the only thing which dispels the trauma.
Sure, friends and family have been supportive, but it’s proven to be the case with me that there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person.
The realisation that they can’t fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven’t lost their child so why should they spend all their time sad about yours?
I will, for the sake of all the other parents out there with empty arms, write ten things I wish people knew about the loss of a child. Maybe one of my ten points might make a difference to a bereaved parent’s life.
1. Four years on I get up every day with the exact same sadness I had the day Ella died.The only difference is I’m more skilled at hiding it and I’m much more used to the agony of my broken heart. The shock has somewhat lessened, but I do still find myself thinking I can’t believe this happened. I thought that only happened to other people. You asked how I was in the beginning yet you stopped, why? Where did you get the information on what week or month was good to stop asking?
For me, most days I don't wake up every day sad but I ALWAYS wake up remembering what has happened, always wake up thinking of Cole within minutes.  It doesn't always make me sad.  Unlike this author, I don't really think I am sad and so when people don't ask me how I am, that is ok.  But I do still find myself thinking 'I can't believe this happened, I can't believe this is my life'.  I marvel each day how much different my life is but it isn't always a feeling of how negatively different it is...just different.  
2. Please don’t tell me that all you want is for me to be happy again. Nobody wants that more than I do, but it’s something that can only be achieved with time. On top of that, I have to find a new happiness. The happiness I once felt, that carefree feeling, will never return in its entirety. It also helps to have the patience and understanding from loved ones.
My family and my 'old' friends might say this, what wish for me to be happy again. But those who really have only known me since we lost Cole would likely say that I have many happy days and am positive.  Wanna know why that is... because I have found a new happiness and a big part of that is the one I love above all others, Christ.  It isn't the same carefree happiness that I had prior to our loss but it's ok...really it is.  I thank all of those who have been, and continue to be, patient and understanding. 
3. Please don’t say ‘I want the old Sam back!’ Or, I can see the old Sam coming back! Sam’s not coming back. This is who I am now. If you only knew the horror I witnessed and endured you would know it’s not humanly possible for me to ever be the same person again. Losing a child changes who you are. I’ve been told my eyes look haunted.
It’s a strange thing for someone to tell a grieving mother, but it’s true – I am haunted. My views on the world have changed, things that were once important are not now and vice versa. I feel as though you’re telling me two things here. Firstly you don’t like the person I am and, secondly if the old Sam’s not coming back I’m out of here. By the way there is nobody that misses the “old Sam” more than me!!! I’m mourning two deaths here; my daughter’s and my former self.
The old Jodie is gone...she's never coming back.  The old Jodie was always loud and bubbly...and positive.  She was flighty at times I think and she was very social, very confident, very big into the busy-ness, the partying and entertaining.  
The new Jodie seems to find herself very quiet at times, very willing to sit back and listen and not comment as much...especially when people talk about the social times that were so much a part of the old Jodie.  I feel like I can't always relate, can't always find comfort in that type of life.  A VERY large part of that is the loss and the journey but another part is my core beliefs changing and my interests changing because of that.  So many things have happened to me, to us, that make me feel like I can't relate to the 'old Jodie' and her friends. Thankfully I have lots of new friends who don't know any different and just accept that this me!
Haunted is a very good word to use because I am very certain that there are times that I look haunted and likely even detached, lost, or bored.  Unlike this author, I don't really miss the old Jodie.  I mean I miss being so carefree and positive but the new me is so much deeper, empathetic, honest and accepting then the old me.
This who I am.  Doesn't mean that more changes won't happen.  Please just accept me for who I am, who I have become and don't take offense to my changes
4. If you chose to acknowledge my daughter’s birthday or the anniversary of her death on the first year, it’s terribly gut wrenching when you didn’t bother to acknowledge the second or third or fourth. Do you think any subsequent birthday or anniversary is not as sad for me? It also says to me in very big neon lights that you’ve moved on and forgotten about my daughter.
This is one of the things that bugs me the most. There are very very few people in my 'real' life who call me or send me a message on Cole's angel day.  Some people who have known me all of my life who all but ignore this day.  That very much.  He was and is a very important part of my life and that day is the most painful of days for me.  If I am an important part of your life, can't you make this day an important part of it too...can't you make me important that day above all other days.  I know it's really close to Christmas and we're all busy but please, just call me, send me message, a card, come by for a visit... don't ignore that day.
And on Cameron and Cole's birthday PLEASE acknowledge that BOTH of my boys have a birthday that day, both of my boys were BORN that day.  They might not both have had a heartbeat that day, one was born still but he was STILL BORN... That day is a day of joy for us as we celebrate the miracle that is Cameron but please don't forget that Cameron has a twin brother who was also born that day!
5. Please stop with the continual comments about how lucky I am to have my other children particularly my daughter. Do I say this to you? Then why say it to me? I’ve buried my daughter do you seriously think I feel lucky?
See that last part of #4... I know that Cameron is a miracle, is amazing.  I know we came so very close to this not being the case, I know that we could have lost him too. But that doesn't mean I am 'lucky'. It's not so lucky to bury a child, not so lucky to have been through what we were through.  
6. It’s not healthy to cry in front of the kids? You’re wrong. It is perfectly healthy that they see I’m sad their sister has died. When someone dies it’s normal to cry. What would not be normal would be for my children to grow up and think “I never even saw my Mum sad over Ella’s death.” That would paint me in a light that would tell them it’s healthy to hide your emotions when obviously it’s not.
Thankfully this isn't something that has been said to me too much.  I know that I've been told that my sadness is hard for my kids to have lived with and that they can learn to resent the amount of time I spent (spend) on Cole and my sadness but all in all my kids have an amazing perspective on their brother and though they did make comments like 'Mom you no be sad today' (Brycen back when I was pregnant and at home on bedrest) they have a healthy, open and honest relationship with both their brother and my 'sadness'.
7. I have four children I don’t have three.  If you want to ignore Ella as my third child because she’s dead go for it but don’t do it for me. Four not three!
8. There are still some days, yes four years on, that I still want to hide away from the world and take a break from pretending everything is oh so wonderful and I’m all better.
Please don’t just assume I’ve thrown in the towel, or worse, actually be so thoughtless as to wonder what’s wrong with me. I still know I’ve married the catch of the century and my children are gorgeously divine and I have a beautiful house, but I’m grieving.
It’s mentally exhausting, especially raising three young children and on top of that maintaining a strong and loving marriage. Unbeknownst to you, I’m dealing with not just my own grief, but my beautiful husbands and my two boys.
It would be nice if you congratulated me on the state of my family because keeping it together, stable and happy, has been hard work.
AMEN again. I know I do a good job of covering some days...especially days when I watch a set of gorgeous ID twins  playing together (which happens almost weekly), when I've caught Cam in his 'twinness' in front of the mirror or playing by 'himself' talking to another boy with another voice or just simply when something has triggered a memory and my heart breaks all over again. But trust me, some days I'd rather just stay in bed or sit at home with my 'TTTS family' and be lost in memories and sadness. 
But I don't do that, I keep going, put on my big girl pants and a smile and go about my day.  Lots of times people who don't know as well, or rather haven't known me as long, tell me how amazing I am about it all, how strong I am, how inspiring.  But those closest to us always seem to be the ones who miss this or even worse are more critical and judgmental.  Somedays having one of those people tell me how proud they are of me, how strong they see me etc...well that would just make my day!
9. I did notice. To the friends and family that found the entire death and dealing with my sadness all too hard and held secret events behind our backs that were lied about, stopped inviting us to things we had always been included in and slowly ended our relationship thinking I didn’t notice.
I did notice. The only reason why I never said anything is because I’m not wasting my words on your shameful behaviour. I am thankful for something though – I didn’t waste any more time on people that were capable of such shallowness and cruelty. Please don’t fear. I would be the first one by your side if the same thing happened to you. That should give you some indication of how horrible it is.
There is so much I could say here, so much of this has happened to us.  It feels like we have leprosy some days.  It hurt then and it still hurts that those who were supposed to be our closest friends couldn't find the time to come and visit when I was in hospital at all or more then once or twice.  It hurts that they didn't call then much and now never call.  It is so hard to know that they feel 'we have so little in common now' or 'I don't know how to talk to her, she's not the same person (see #3).  I am not going to focus on this anymore here for two reasons... it's not going to solve a thing by being bitter, angry or full of regret. And two... because they likely aren't reading this anyway.  
But do know that I will be there for you if you are ever, even remotely, in my shoes.   
10. Grieving for a child lasts until you see them again. It’s a lifetime. If you’re wondering how long your friend or family member might be grieving for, the answer is forever. Don’t rush them, don’t trivialize their sadness, don’t make them feel guilty for being sad and when they talk to you, open your ears and listen, really listen to what they’re telling you. It’s possible you’ll learn something. Don’t be so cruel as to give up on them remember it’s not about you it’s about them.
I’ve been left repeatedly heart broken as friends that I truly loved and never thought would walk away from me tossed me into the too hard basket or – more hurtfully – the crazy basket. Phone calls stopped, text messages stopped, comments on Facebook stopped and I get the same thing every time. “Sorry darling I’m just flat out”, “Let’s catch up soon” and “I miss you.” The list could keep going but I get it. I’m not the type of person either that is going to pursue a friendship I know the other person doesn’t want. Everyone has a conscience and thankfully I don’t have to live with theirs.
You would think there are a lot of articles that raise awareness of the awful process associated with grieving for a child, but even stories from other parents are a rarity. The sad reality is there just isn’t enough said or printed. You seldom hear through the media about grieving for a child and the impact their death has on all the various people involved.
It can destroy a marriage instantly, it can leave siblings hurt, confused and angry. Often siblings are too young to understand, they’re angry that their family is not the same and even angrier that they don’t recognize their parents. Losing their sibling is bad enough but so much more is lost for these siblings that is never recognized. I could count on one hand the amount of times I’ve been asked how my boys were.
You might hear about the gory details surrounding a child’s death in the media but that’s about all. There should be so much more written about this topic, and additionally it should be talked about more openly than it is. I’m disappointed not just for me but for all the other grieving parents in society that this topic is met with so much fear and silence.
The bottom line is people are uncomfortable with the situation and I really don’t know why. My feelings tell me it is such an horrific thing that most people don’t want to know about it. Maybe they fear through knowing so much they might become obsessed with their own children dying. Parents worry enough about their children already. Do they really need the added worry about knowing how your child died?
Without question, my daughter Ella dying suddenly has been the worst thing that has happened in my 37 years here on Earth. I doubt that anything in my future is going to top it. Actually, just between us, I beg and plead with God on a daily basis that nothing ever does top that experience, but the truth is I just don’t know.
I’m not a mind reader nor do I have a magic pair of glasses where I can see how the rest of my life will unfold. I just have to hope that nothing ever does, but I have a very real fear it will because it has actually already happened to me. I know without having to hold a psychology degree that having those fears is normal.
What I’ve endured, losing my little princess, has been so unimaginably horrific that I don’t think I would survive something like it again.
And none of us one can tell the future.  I pray that I will never go through anything so painful, so shattering again.  But I have no idea what God has in store for me.  What I do know is that because of Cole's death I will be much stronger for whatever God does put in my path, what I do know is that I can lean on Jesus and he will carry me through it.  I don't know how I would survive something as horrible as your child dying again but I know that I will perservere with Christ at my side and that He will get me through any trial that comes my way...I just pray that I don't have to experience this again.
What I have had to give emotionally to get through it has dwindled away all my mental strength – just like twenty cents pieces in a kid’s piggy bank.
I’m broke – not broken – I’m broke emotionally. I know all the energy I’ve needed over the last four years has not just been spent on my grief for Ella.
It’s been on trying to get my friends and family to understand what it’s like to walk in my shoes. I’m angry about that. When I should have been grieving, I was defending myself.
Defending myself...such a key phrase.  I remember somewhere around Cole's second angel day a friend said to Geoff that she was 'concerned that I was living in the past', that I 'needed to move on' and that I needed to focus on Cameron.  I was so angry and remember saying to him 'well I hope to hell that ____________ (her daughter) never dies but I'll be sure NOT to say to her 'well atleast ___________ and _________ (her son and daughter) are still alive, atleast you can still focus on them'.
I shouldn't have had to defend myself, I shouldn't have been judged then, especially so close to that second anniversary, and I shouldn't be judged today for the amount I talk about Cole, about our journey, about Cameron being a twin and having some quarks that go with that.  NO ONE has the right to judge and no grieving parent should ever spend more time worrying about defending their actions of grief then they do trying to heal and put the pieces back together again.  
I’m probably very close to being as angry about that as I am about her death. I wish I wasn’t angry. Lord knows I don’t need another emotion but I don’t know how to not be angry, especially with some of the things that people have said and done to me. I talk and talk yet I’m often never actually heard.
I’m not sure if it’s a lack of literature around or perhaps that people simply don’t want to read it because it’s so awful and they don’t want to know someone they love and care about it experiencing so much agony. I  personally know though, if I found out a family member or friend had been diagnosed with an illness or disease, or worse, their child, I would be on Google immediately finding out more about it and how I could help them the best. So why is it that this doesn’t seem to apply with the death of a child?
Most people just think they know. I find this extremely frustrating. The death of your child is the worst thing that can happen to a person, yet most feel educated enough to advise, to criticise, to lend their words of wisdom when they don’t know the first thing about it. Get over it? Why don’t we see if you could get over it first!
Most people wouldn’t know that when I meet someone new I instantly become uncomfortable and filled with dread. I know at any moment when I engage in conversation the question is going to arise about my family and how many children do I have? I would love not to have to tell them. Life would be a lot easier if I could take that path. However, I do have another child. Her name is Ella. She would now be four but she died when she was 19 days old. She isn’t lost – I know exactly where she is, she’s dead.
Ella is my third child and she deserves to be acknowledged just as much as my other children. I’ve lied before saying I have only three children, but the guilt that follows me around for days on end is just simply not worth it. I can actually hear Ella saying to me “don’t I matter anymore Mummy?” “Why were you too ashamed to talk about me?”
So personally for me, as much as I don’t want to tell someone I don’t personally know very well that my daughter is dead, the guilt of not acknowledging her is worse. I don’t have three children, I have four and my daughter is not my only daughter – I have another as well. It’s pot luck what their reaction is going to be. There’s no telling what they’re going to say. You just have to close your eyes, cover your broken heart and hope they don’t plunge that knife further in.
If I could have my questions answered on why people give so much advice on a topic that they know so little about, it would really help me. What has surprised me so much since Ella’s death is how little empathy there is in the world. Empathy to me is a no brainier. You just imagine you’re in the other persons shoes, simple yes? Apparently no. Just think how you would like to be treated and if you wouldn’t like it don’t do it. You never know what your life holds – one day it could be you wearing my shoes!
I pray it's not but please, PLEASE, think before you judge someone for how they are coping, what they spend their time doing to heal, how they are grieving.  Unless you have been there you have absolutely NO RIGHT to pass judgement.  If you are worried about how they are doing the talk to them...better yet, LISTEN to them.  But don't lose sight of the fact that you can't imagine the pain they are in and the empty spot that will be inside of them forever.  
I hope this article about my personal thoughts and opinions helps at least one person understand to some degree what life is like for the bereaved parent ❤

1 comment:

  1. Thanks, Jodie, I needed to read/hear the article and your comments. I was thinking not only of you and your family but also Jason & Janeanne, Helen & Daryl, Jaron & Ryan, Dave & Helen. Blessings to you. Yes, the LIGHT does shine thru you and your actions. Love, Aunt Myrna