PLEASE JUST SHUT UP!!!

If you have read any of my blogs you know that I am trying to get through my grief, trying to find my way …I try not to get hurt or angry over every horrible thing I have had said to me – reminding myself that -Thank God the person saying these things has no clue.

But I just read something someone said to a mom that has also lost a son….and well I just lost it…and now I am just stunned, angry, and well some people need to just shut up!!!

So to those people that have stood by me supported me – I cannot express the love and thankfulness I feel for you every day – I am so gratefull for your silence when needed, kind words, and compassion.

To the others and you know who you are…….PLEASE JUST SHUT UP – you do not know what losing a child feels like, do not compare it to when you lost your PET!!!

I do not belittle the pain you felt , but sorry, no- it is not the same …and you have no right to tell me or anyone how they should grieve or for how long!

I am a mother that has lost a child, I don’t need , ask for, or want your sympathy.

I do not post about my child for you – I do it for me – it helps me…I don’t care how it makes you feel!!!

Please do not tell me or any other parent how we need to quit “dwelling” on this – or how YOU are “tired” of us being sad, or what it feels like when you look at your pets old collar…….

Unless you have experienced what we have ( and I pray you won’t ) – you have no right to try to tell me I need to “heal” I didn’t skin my knee..I don’t have a papercut.

Please do not give instructions on how someone needs to act…who are you to tell anyone what is right or wrong??

I know I have other children, I know I have grandkids – but I don’t need you reminding me, and I don’t need you telling me that “at least I have them” They do not replace the child I have lost.

We are putting our lives together the best we can – so you telling a mom to “put this behind her and move on, after all you did when you lost you PET” Please just shut up!!

And for the love of God – do not tell a mom that she needs to find “a way to get over it”… we are doing everything we can to find the strength to go on living every day…this is our child – we will NOT get over it – and how dare you say we should.

We are lost, we are forever broken, we are on a journey through the bowels of hell – who are you to say ANYTHING to any one of us.

YOU – do not know the strength and courage it takes just to wake up every day, let alone get out of bed.

YOU do not know what it feels like to have found your baby dead…or to have watched them suffer through a horrific illness, or to know that nothing you did or could do would save them.

YOU have no clue…therefore – YOU have no right to say anything!

Do you think that losing your wonderful old pal compares in any way to losing a child whos heart beat inside of you??? The fact you are making that comparison shows the lack of understanding or compassion you have.

Do you have any idea what losing a child does to your heart, your mind or your very soul?? DO YOU??? NO…..YOU DO NOT – so please just shut up.

You have no clue how much you are causing more pain to someone you claim to be worried about….

You are not helping, so walk away…

You are the type of person, that now that some of the fog has lifted, I am purging from my life.

So you know – when a parent talks about, or posts about their child – it is not to gain sympathy, it is not to get your attention, we do it because we love our child…they are still a part of us, our family, our lives.

We do it because it helps us, because it makes us feel better, maybe even a little happy, and we need that. Even if it makes us sad in the long run, because we need to feel that too.

We do that because they are still ours, and our hearts are still with them…

We talk about them because we want our grandkids, their children to know them…so they can carry their memory with them too…

We are sorry we are not worried about how it “appears” to you…..

We talk about them, we post about them because we need to..it’s not about you..So please just shut up .

What Now?

I am in a nightmare…I want to run, but there is no where far enough away.. no place that I can go that doesn’t trigger a memory of my son. And the pain is joined by fear, of everything. I want to be where no one knows me, a place where people won’t look away.

But I want to be around people that aren’t afraid to say my sons name, share a memory …

I don’t know where my place is any more. My heart is broken into pieces….

The day my son left, everything I knew, everything I believed, changed. Now I am a person I don’t even recognize, a person I don’t always like very much, a person I don’t understand.. When I look in the mirror I am looking at someone else….puffy eyes are normal because I have either just stopped crying, or on the verge of crying.

The things that mattered in the past – hold no interest for me. I was successful in my carreer, I always thought I had done a great job at being a mom, and a grandmother…I loved having all my kids together for birthday parties, or Christmas…my kids are what has always made me happy. My greatest achievement….my biggest failure….

I get so easily hurt by one small comment or lack of one.

I have spent most days since wondering how it is I have survived. How I continue to keep going. it is a daily struggle, How to live with this pain, the emotions, the rawness of it all. There are no words to describe how hard it is. But I get out of bed every day and I try…..it doesn’t get easier, it just gets a bit more familiar.

There is the constant sense of feeling like you can’t breath…my thoughts from the moment I wake up, until when I fall asleep – if I fall asleep – are of my son.

There is that brief moment when you open your eyes in the morning, hope…that it is all a bad dream. Then you get hit again by the reality and complete disbelief … some days getting out of bed is a huge accomplishment either way …even if you find ways to keep busy the thoughts creep in – a song, a smell, something and the memories come back…and the reminder of all the memories I won’t ever have….I am learning to accept the emptiness, the ache. Nothing or no one can ever fill the hole…the empty space…I have just come to learn to exist with it…but there is always that heaviness. I miss my son so very much, I feel the pain of that loss with every breath I take. A parent that has lost a child is forever in a nightmare they can never wake up from. So what now?

I am trying to take the next baby step.. I need to honor my son ….so everyday I try to find a little more strength, I try to find compassion for others, but know I have to have compassion for myself too. And that’s a little something I am working on….

Challenge

Recently I was asked by someone14523195_10153759884561604_4099149877304432204_n if my son was ever violent towards me, was I ever fearful of him? He was “mental and all”. This person also said that his “passing was maybe a blessing” because I wouldn’t want my child to “run around hearing and seeing things”. Maybe his death was “for the best”…. and yes they are now on the list of people I will have no need to speak to.

But it just made me think of the things people say that just make me sit and shake my head. Do people believe these things – or are they just things they say because they don’t know any better?

My son had a brain disease, he was bipolar, schizophrenic – he hid it and tried to deal with it alone for a long time. He self medicated with alcohol, afraid to tell anyone – embarrassed by it – not wanting to let anyone know what was going on in his own mind. Caught up by the stigma. Two years ago he died, they said it was from a heart attack, and mental illness.

He was an adult, so no matter how hard we tried to help, to give information, we hit brick walls…no one had to listen to us – he was protected under the law. I will never understand why they would not have wanted us all involved – they made him have a payee – someone to take care of his money, yet they didn’t think he needed anyone to help him make major medical decisions?????

And if you dare question any of them, you are cut off, and told to “cut the apron strings” – if that is the advice parents of adults with brain disease are given by the people they are hoping can help their child – how do we, how can we, believe we are getting our loved ones the help they need and deserve? They didn’t care about him.

Brain disease was what my son had, it was not who he was….he was very bright, smart, so very funny. He walked into a room and he took the room over -he would know everyone there before he left.He would give someone the shirt of his back…he was a son, a brother, a father, an uncle…he loved kids.

But the stigma, the poor treatment…it creates a barrier – a barrier built on false information and fear.

Friends judge, employers are fearful, people believe all the myths. The stigma and discrimination against patients and families prevent people from seeking mental health care. Many have their human rights violated they are handcuffed, restrained, and even arrested.

So here are some facts, maybe it will help people understand, maybe you will be outraged…or a little more understanding…

One in 25 Americans lived with a serious illness, such as schizophrenia, bipolar disorder, or major depression.

It is a myth that people with brain disorders are violent – the fact is that people with severe brain disease are more likely to be the victim of a violent crime.

People cannot just snap out of it, they cannot just get over their brain disease, any more than you can any other disease…

Brain disorders can affect people of any age, race, religion, or income. It is a medical condition .

Yet the saddest part of it is that every year, as many as 8 million Americans who have serious brain disease do NOT receive adequate treatment.

So I am asking – please learn about brain disease. Remember when someone is talking about mental illness it is just that AN ILLNESS, just like any other illness!!!

The jokes you make, the false information, the uneducated comments, all lead to the stigma. Understand that right now – someone you know may be afraid to get treatment for their disease – because of fear and judgement…..I challenge you to help change that!

No changes…except the biggest one.

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As my Facebook memories come up everyday – you look back at where you were and what you were doing this same time last year,  two years ago, three years ago……and today two years ago, I was talking to channel 7s Ross Jones begging for changes, after years of my son begging for help…
I don’t remember a whole lot of that or many other days from these last two years, but because of Facebook
I got reminded that my youngest grandson was photo bombing the camera as I was talking to Ross…I remember thinking how funny Bill would have found that.
I remember thinking that Ross polished his shoes, something Bill had noticed the first time he met him. That was a thing for Bill –
I remember being hopeful that people would hear Bills story and would finally do something to change the way people with brain disease were treated…
Two years later, and I am still getting emails from parents wanting to know what they can do to help their child who is not getting proper treatment, if they are getting any treatment at all.
Two years later and the only thing that has changed is everything about  my life without my son…another memory came up from four years ago, it was a picture of my grandson standing next to his dad – both smiling…. it made me remember there will be no new memories…no more pictures of that smiling face, that beautiful smiling face….

Discovery

This time two years ago, my son was fighting for his life. He was checking himself into hospitals because his brain disease was taking over, and he wanted to be well.

Right now I am replaying every moment of those last days, we never realize every moment can be the last moment we have…..

As Feb. 8 creeps up making it two years since losing my son – I think about him..the last night I saw him alive, when he was walking into his house, he turned and looked at me…and that look is burned into my memory.

My son had brain disease – most call it mental illness…but his brain was turning on him, his disease was progressing – he knew it, he wanted help – sought out help. Instead I found him gone, they say it was a heart attack….

Feb. 8 – last year I was in such a fog – I barely remember it…..but this year it is a bit more clear, to painfully clear ….I wish it wasn’t …Remembering….the last time I talked to him, saw him smile, looked into his beautiful eyes, heard him say mom….fought with him..holding him when he was just a baby..his face turning right to me the first time he heard my voice….all of those things – those are the things that have me not able to breath….I wish the fog would come back..Those last few weeks of him trying so hard to get help, and not getting any….so many of the would have – could have – should haves are being replayed – along with the memories I have not been able to look at – God I miss him more than words could ever express.

I have been so lucky to be able to be with my grandson  his son, – right now…it has been such a blessing – but I have learned something too – about me and my grief….

We say all the time that no one experiences the grief a parent goes through when their child dies…It is not like when I lost my parents, my brothers or sisters, my dearest friends…it really is a grief like no other.

And even though I know that, I still wonder why others are not feeling what I feel….I have been angry because they all seem to not be hurting like I am….

This last week, being with my grandson, I realized I was hurt he wasn’t feeling what I feel, that no one was feeling this…..hurting everyday, broken, laying in the very bowels of hell. I have done this with everyone – my other two children wondering why they don’t feel his absence like I do. ..I expected my grandson to be talking to me about his dad, going over how much he loved & missed him, I wanted to tell him his dad was so grateful for him, his son… or when I am with my daughter and she doesn’t mention her brother, when her children don’t mention him or tell their stories of him as nearly as often now, or when I tell my son how much something reminds me of Bill, and he doesn’t react with the same feelings I am feeling, or doesn’t express them the same – it has left me feeling like they weren’t missing him…they were not understanding how it hurts just to go on every day. I couldn’t understand how they could all just keep going…The truth is they aren’t, they don’t, they can’t….

It’s not the same for any of them ….because they were not his parent, they were not his mom…it will never be the same. It took all this time for me to have this “revelation”.

They love him, but they did not lose the part of their soul as I did, part of me died…they have a huge hole, an empty space, they have pain absolutely, they miss him everyday I am sure…..but it is not the same.

They say we learn from life and that we learn from death….I guess we do. I learned something I thought I already knew… I am alone, walking my own grief journey, and I cannot expect them to join me, I never want them to have to.

I really get it now…it is different – they are not his MOMMY. I am and I am still trying to find my way…..

Looking to the New Year…changed by grief

14725745_915669741899172_5321365434219779665_nThe New Year ~~ for me is just a look at another year of looking back at what used to be, at who we all were before we lost Bill. Deep grief, the grief from losing a child has changed me, changed everything ~ I am not as strong as I was, I am not as confident as I once was…I am scared of so many things. I don’t have the same reaction to things I did in the past, I don’t have the tolerance for things I used to be able to let go of. I am more sensitive..more emotional….grief touches you, grabs you, hangs on – it affects everything you do – you live life in terms of before and after…Looking toward the New Year – makes me feel like I am leaving my child behind…The rational thoughts are  I have to accept the changes and try to find some grounding, some center, I have to learn to get to know the new person that grief has created, left behind.

I guess part of the non – acceptance of it is because it means I am not the same person I was when Bill was alive and I hate every part of everything that has changed, I long for so many things to be the same, and nothing is… I am never going to be the person I was, the person he knew.

I am broken…my pieces will never quite fit back together again. I am lost and this whole moving forward thing has left me lost and isolated, even when I am in a crowd.

My guard is always up, I have built that wall, but I have done it thinking I was doing it to protect these gaping wounds from opening more. I am doing it because I need the emotional distance it provides me.  I have to ask myself if it is because I am afraid of more hurt, is it the fear of passing time, or is it just me not knowing who I am and if the baby steps I take every day are moving me forward or leaving me stuck? I keep working hard to keep the small bits of progress I have made, and here at the turn of the new year when everyone is looking forward, making resolutions, I am still giving myself reminders to just breath.

Grieving is hard, it’s work, living after your child has died – feels impossible.

You can’t leave it in the year behind you…you can’t make a resolution and have it all go away – it doesn’t ever leave.

Merry Christmas Angel ~~

dsc02034Christmas ~~ a time for celebration, for family ~~ the excitement of all the gifts being opened ..laughter.. I know I won’t sleep much tonight, I don’t sleep much any way – but tonight I will be replaying the day…watching my grandkids opening their presents, I will be going over our family party, and all the smiles and all the fun…days of joy and I am so grateful for it all!

But instead of falling asleep smiling, I will be awake with to many thoughts…thankful for the joyous moments…but I will lay here wondering what this holiday would have been like if my son were here with us. I wonder what great present he would have bought his son and how excited he would be to give them to him, what fun things he would have gotten for his neice and nephew.

I will lay here missing his laugh, watching him read stories to the kids, seeing his eyes light up when they were opening gifts.

I will lay here wondering what life would be like if he were still here. I wonder what jokes he would have been telling.

I will lay here thinking about the laughter he and his brother would have shared, the look he would have had watching how happy his sister is.

I will lay here wondering who I might be if you were here.

But then I do that every night…..but these – these are those moment – those moments of joy and happiness – that can never really be completely felt…because there is an absence – a void –

Merry Christmas baby…you are constantly in our thoughts, you are forever held tightly in our hearts…I miss you,  my beautiful angel ~