I lost my son, and my self

[demwing]

First, I'd like to thank DUer I Have A Dream for the star and the right to post here. Second, I'd like to ask Skinner, EarlG, and Elad to consider lifting the bereavement group from the donating member only restriction.

But mostly I want to tell everyone about my son Ian. I wish this wes a happy story. It is not.

A year ago, I was the Operations Manager of a large call center in Utah. I made good money, and I had a happy family. My wife and I had relationship issues, but we were working through them. We had three sons - Kevin (19), Jacksen (13), and Ian (8).

Here's a picture of Ian from 2007.



In May of 2008, Ian began waking up in the middle of the night with headaches. Also, he was complaining of pain in his legs, and was having trouble walking. After a few doctor visits we learned the horrible news. My son had a golf ball sized tumor in his brain. The tumor was malignant, and his chances were 50/50 at best.

Over the next 7 months, I watched my son fade away. The tumor was removed by surgery, but the cancer had spread through his central nervous system. He lost the ability to walk, then to control his bladder or bowell movements. We had to catheter him multiple times daily, and give him a daily enema. The side of his face became paralyzed, and he couldn't smile without pushing his lips into shape with his fingers.

Ian lived long enough to see his 9th birthday in November of 2008, and Christmas as well. That holiday was so hard. Ian was hardly able to move around, and though he was full of love and appreciation, he couldn't even play with his toys. He could barely lift them.

Here's a picture of Ian in December of 2008.



Ian died on January 14th of 2009.

During his illness, I couldn't focus on life. I lost my job because of poor performance, and was denied unemployment. After he died, my wife had a breakdown, and ran off with some guy she met on an internet chatroom. She left me to clean up the mess of our lives, and to care for our 14 year old son Jacksen. I had to clean out Ian's room by myself. I had to get rid of his toys, and his clothes, and his books. I saved his school stuff, and some personal things. I can't let go of everything

I packed up our house, and headed to Florida, where my 76 year old father lives with his sister. On the way, we took Ian's ashes and spread them across America, from coast to coast. Ian's ashes are in the Pacific Ocean at Crescent City, CA where he was born. There are also spread the Colorado river, the Great Salt Lake in Utah, the Mississippi River and the Missouri, and in Lake Michigan. His ashes are in the Gulf of Mexico at St. Petersburg, FL, and in the Atlantic at Cocoa Beach, FL. Our goal was to take Ian's ashes up the east coast, and leave a little in the Hudson, and in Boston harbor.

But the trip to Florida ended badly. When we got here, I found that my dad was in the early stages of Alzheimer's, and at times, didn't recognize me. In his mind, I was still a young boy, and he didn't understand who this 46 year old man was in his home. He thought that I was a guest of his sister.

I was offered a job as an Account Manager at a local marketing company at a fair wage, and moved out of Dad's house into a condo. Two weeks later, before even the first day of work, the job offer was pulled due to economic hardships of the company, and I have not been able to find any work at all since then. Savings have run out, and my family is not very well off. No one can help.

I'm falling apart. I have no idea how to pay rent, or bills. But most of all, I sit in my bedroom at night and cry until I have nothing left. I feel empty, like the husk of a dead insect. I've applied for food stamps and cash aid, but as anyone in Florida knows, there isn't much here in the way of financial support.

I don't even have anyone to talk to. My dad doesn't know me, my aunt doesn't understand, and I can't burden my 14 year old son. He has issues of his own, he lost a brother and a mother at the same time. The one person in my life who could have understood this time was Ian's mother, and she is somewhere unknown, dealing with her grief in a way I don't understand, or respect.

I set up a digital charity page for anyone who can help financially, and the link is here:
http://www.digitalcharity.com/m.php?id=91538

But what I really need is to have someone or some group that I can talk to and lean on. I had to hold it together for everyone after Ian died, and I did, but I can't hold it any longer. I feel alone, and frightened, and desperate. I have a crack in my soul, and though people tell me I will heal, I don't feel as if I'm getting better. I feel as if I am at the last grasp of my sanity, and I don't know where to turn for help. It took me days to write this post. I broke down several times in the process, and had to walk away.

I'm sorry if any of this was inappropriate. Forgive me, because I honestly don't know the way anymore. I lost my son, my life, and my self.

[auntAgonist]

1. demwing .. I don't know what to say

I'm so sorry for your loss and many losses since. I hope there are others here that can offer you support and help in any way that we are able to.

I am truly at a loss for words, but please know that I'm here if you feel up to writing more.

Please stay in touch ... don't give up. please.

kesha.

[auntAgonist]

2. I would encourage everyone to read

your blog. I just spent the last little while over there. Keep writing, it is so good for the soul.

:hug:

aA
kesha

[demwing]

3. Thank you so much

It helps a little to have someone listen and not judge, or tell me "you'll get over it."

thank you

[auntAgonist]

5. I don't believe you'll ever get over it ... how is that possible?

You will however deal with it in your own personal way. Your son was/is a vital part of your life. Oh how you loved him. Your blog is a testament to that. What a beautiful child Ian was. I do hope you continue to write. I will continue to read.

I think of Jacksen too and the pain he must be feeling. You both have so much to deal with. You have each other and I hope that is comforting to you.

How is your son Kevin doing. He's married yes? I hope that they have remained close at heart.

:hug:

kesha

[Odin2005]

4. Thank you for your story.

:hug:

[demwing]

6. thank you, Odin /nt

[livetohike]

7. demwing you always have a place to come to here in our group

:hug: I'm so very sorry for your loss of Ian and the other losses in your life. It's so hard to bear everything happening at once. I hope your pain lessens daily and you can recall the good times you and Ian enjoyed and they will make you smile.

Please stay in touch here. I think it's a great idea to make this forum "free". There are many people hurting that should be able to come here when they want.

[raccoon]

8. I am so sorry, demwing.

:hug:

Thank you for sharing that.

[demwing]

9. Every time I look at his pictures it starts all over.

There doesn't seem to be an end to the pain or the tears.

I want my boy back, I want my son. oh god I miss him so much...

[auntAgonist]

10. I'm so sorry you're going

through all of this pain.

:hug:

[CC]

11. I am so sorry for your

loss. Ian was a handsome young man and sounds like a sweet soul. I am never good at words and stuff and know there really are no words that really help though knowing others care can ease the burden. I would like to pass on a piece of advice I was given that did help even though it sounded nuts. Embrace the pain. Don't run away from it. Feel it and even though you think it will kill you let yourself feel it even more. Cry, scream, hit on your pillow or other soft object. You will survive it and eventually you will heal. Sending lots of :hug:s your way.

[DollyM]

12. boy do I understand that . . .

People say "if there is anything I can do for you" I want to say, just give me my son back! But no one can do that. The hardest thing is dealing with the realization that he is not coming back and fighting the inclination to want to go and join him. But you do at least have something that I do not have, another child to care for. I know that may be hard but we lost our only child. It is like my entire future is gone as well as my past and present. I will never have grandchildren, there will be no one there for me when I am old, it is so God awful depressing. We are in a terrible financial situation too, no jobs, unemployment ran out in June, ironically, the only thing that is helping us know is that I was wise enough to take out a life insurance policy on my son when he was younger. It covered his funeral, headstone and left us a few thousand in the bank. Then I feel guilty at times that our son's death is helping provide for us . . . man, this is a vicious circle. I think when you have this many losses this close together, your feelings of any self worth go totally in the toilet.

[demwing]

13. Dolly, I had two things helping me

1. It was a drawn out illness, so we all had time to say our goodbyes.

2. I do have another child, and a step son as well. I had so much of my self image invested in being a dad, I just don't know how I would have survived if I were suddenly NOT a dad.

My heart goes out to every parent who loses a child. It is the most traumatic thing I can ever conceive of happening. People tell me I will heal, and I will, but this has changed me as a human, and not entirely for the better. I aged 10 years in 6 months, and find I have much less patience for foolish people, or rude people. It's as if I have a callous growing on my soul.

On the other hand, I am finding myself questioning long held assumption on what constitutes value in life. I don't want to spend the last half of my years (I'm 46) being a professional consumer. I worked through my son's cancer by working harder at my job. If I had those months back now, I would spend every minute with Ian.

I'll never make that error again. I have a better understanding of what is important, and what is entirely superficial.

[DollyM]

14. I read your web page about your son . . .

The pictures of him and the kitten were so sweet. My son adored his cats and really, they give me some small point of comfort because they were a part of him. I know exactly what you mean about what is important. I would give anything and I mean anything, to have my son back. The last couple of years have been so hard for us financially but I kept going because I knew I had to keep my son fed and clothed and whatever I had to do to do that, I would. He was the sunshine in our lives and without him it is very difficult to see a reason to go on. I just struggle from day to day and realize that try to think of what he would want me to do. He would want me to make sure his cats get fed and loved, he would want me to keep his friends encouraged who miss him so much too, he would want me to continue to have faith and hang on.

[Ineeda]

15. I hope you're doing better...

I just found this forum and my heart goes out to you.
Demwing, I'm so very sorry for your loss. It's got to be the most devastating and horrifying thing to lose a child. I have suffered many losses, but never a child. Your losses keep piling up - wife, parent, job security, financial security, familiar surroundings, etc. - so everything has been compounded. I wish I could help. There are two conclusions I reached when I suffered losses. It may help. 1. You will never "get over" the loss of your son, but you will "get through" it. Don't try to get over it - it's a futile effort. 2. Try to ignore the "he's in a better place" platitudes. Whether you believe in a god or not, the hereafter or not, his place should have been with you for many, many years to come. That was the better place. To think otherwise is to diminish the value of your love for him and your time with him, as if that love and that time were not good enough. It was more than good enough.

[demwing]

16. I have hit on seriously hard times

I need financial support. I know the whole country is hard off, but I don't know where else to turn.

I set up this digital charity website:

http://www.digitalcharity.com/m.php?id=91538

If any one can help us, please do. If your church can help us, please ask them.

The Death Of My Son

In 2008, our youngest child was diagnosed with a malignant brain tumor. His name was Ian, and he was 8 years old. Surgery removed the tumor, but the cancer spread through his nervous system, and radiation therapy did not help. Ian lived long enough to see one more Christmas, then passed away silently two weeks into 2009.

Since then, my wife and I have separated, despite counseling. We see Ian whenever we look at each other, and neither can bear it. At the time, I was so despondent that I lost my job, and had to search for a new employer. I was offered a job with a local firm, but the economy tanked and the job was canceled. Hospital bills wiped us out, and my credit took a beating.

Ian is survived by his brother, Jacksen, who is 15 years old. Now Jacksen and I live alone. We are down to the last few dollars of my savings. I search every day for another job, but have had no luck so far. Depression is a constant enemy, but my son and I have each other to lean on for emotional support.

We need help with rent, utilities, and car insurance - total of about $1000 per month - until I can get more work. My family is tapped out, and we have no where else to turn. Anything is appreciated. God bless.

http://www.digitalcharity.com/m.php?id=91538

[demwing]

17. GREAT NEWS!

I just got hired to manage a call center for a local company here in Clearwater. Not the money I was making before, but good enough to pay the bills and stay off the street. Now we just have to make it till 1st payday, but we will!!!!!

Things are turning around, I hope. I've accepted that I will NEVER get over Ian's death, and have just stopped trying. But you know what? It feels healthier, somehow. :)

[shrike]

18. Wonderful

Just to let you know: I have never lost a child, but I DO know that you never really get over anything. It just becomes part of who you are. And like you said, that's not such a bad thing.

Best wishes to you and Jackson. Here's hoping you have a great holiday season.

[demwing]

19. Today is Thanksgiving. It is also Ian's birthday.

I'm not having a good day. I read a thread on DU about how someone had "the worst Thanksgiving ever" because their cat died. I'm angry, because I want to jump on the thread and scream

"MY SON DIED!! It's Thanksgiving, and my Ian's birthday, but he's not here because HE'S DEAD. Fuck your cat, I lost my son. He should be here to get presents today and eat turkey, but he can't, and never will, again."

Mine is the worst Thanksgiving, because I can't share it with my son, and because he can't enjoy another year of life, and ALSO because I hate myself for feeling so fucking selfish that I can't allow someone else to feel grief.

I want the grief to be mine, and I want them to grieve for Ian. I am NOT generous.

And so the first birthday without Ian, and the first Thanksgiving without Ian, simultaneously pass. I don't feel like I've healed. I just feel older.

[RevCheesehead]

20. I've been thinking of you today, demwing.

(I had my meltdown yesterday - not just missing my mom, but also watching my dad slowly disappear with Alzheimers.)

Today, I can offer you a hug, and lots of prayers. Tears can be healing, in a strange way. Grief is normal, and today's grief is doubly compounded. You have my deepest condolances, and I pray there will be a time when your grief will fade and beautiful memories will bring you healing.

Bless you. :hug:

[DollyM]

25. I know what you mean . . .

I have found that the little things people complain about, the lines in the stores and whether to have turkey or ham, just irritate the hell out of me. I keep wanting to shake someone and scream "at least you have someone to feed your turkey or ham for or buy a Christmas present for!" I couldn't even bring myself to put up a Christmas tree, I ignored Christmas and then suddenly, on December 31st, I felt like putting up the Christmas tree, so I did. It is still sitting in the entry way, decorated and with the lights shining. In some weird sort of way, I think I will keep up the tree until Kevan can come home and see it. Yes, I know that isn't going to happen but in a way it makes me feel a little better. It is something tangible I can do for him. So in July, if someone comes to my door and sees a Christmas tree still lit up in my house, I hope they understand that yes, I have gone a bit insane and fully have the right to do so! About the cat, we lost our cat, our sons's cat that we bought as a gift for him for his third birthday, the evening before he died. She was almost 17 and I knew she wasn't going to live much longer but I thought it was amazing that she waited until it was time for him to pass from this life too. I believe they crossed over the rainbow bridge together . . . but that is a story for another time.
Just wanted to say, I think about you also and have those same thoughts. It's okay, we are broken people right now and without our sons and our lives have been changed forever. I just try to take life one minute at a time now and hold onto Kevan's spirit and memory in my heart.

[auntAgonist]

26. Dolly..

your words, so beautiful and so real. I have never lost a child yet I could feel pain in my heart as I read them.

I have no marvelous words of wisdom but I do want you to know that I think of you and all of my friends here on this particular forum often.

:hug:

Thank you for sharing a bit of your heart with us.

kesha

[polly7]

21. I just saw this demwing and am so sorry.

What a sweet boy, my heart goes out to you for all you've had to face. I lost our Karley at the age of 7, he looks so much like your Ian in one of his pictures it's uncanny. He died suddenly at school, he'd had chicken-pox, been cleared by the doctor to go back to school and collapsed playing hide and seek at recess. The other kids thought he was playing, then they were afraid and covered him with coats in case he was just sick and cold. He was probably gone by that time, the virus had gone to his brain. I think of him at least 10 times a day, sometimes for hours at a time, not able to move, or sleep, or eat. I too had to quit work for a while, other things were going on at the time he died, we had a bad call with the ambulance, I'd just left an abusive marriage and was being stalked night and day. Through all this, the only thing that kept me sane was thinking of the hilarious things he would say and do, how wise he was at such a young age, a protector of all and friend to anyone and everyone. I know myself, and the rest of us will never get over losing him. Burying a child is the worst possible thing on earth. My heart really does go out to you, if you ever need another ear, I'm always willing. Take care of yourself.

[emilyg]

22. I am so sorry.

[demwing]

23. 1 Year Later

Ian died on the 14th of January, 2009. I have lived without my boy for a year now. Tomorrow, I take a three day weekend so that Ian's older brother - Jacksen - and I can travel down the Florida coast, making our way down to Key West, the most southern point in the continental United States. There, we will sprinkle more of Ian's ashes in the sea, perhaps take a charter cruise into the Caribbean, and find a little uninhabited island where I can bury a small treasure chest of his belongings.

I will probably do something like this each year, until I too die. This is my life. I miss my boy, I always will. My heart is still a broken thing.

[auntAgonist]

24. I hope that you and Jacksen find peace and hope

in your journey.

The past year has been a journey. A journey filled with all sorts of emotion and tears, some laughter and some quiet reflective times.

You've chosen a beautiful way to honour your boy and I'm sure that you and Jacksen will find some comfort and perhaps some healing as you travel together.

I wish you a safe journey filled only with good memories. Perhaps you'll share some laughter and some tears.

Travel safe Demwing. You are both in my thoughts.

aA
kesha
:hug:

[auntAgonist]

27. Demwing, Thinking of you and hoping your journey

gave you some peace.

kesha.
:hug:

[Mari333]

28. My youngest son passed on 3 yrs ago. he was 23

I have 2 other sons and believe me, thats the ONLY reason i am still here. if they werent in my life i would be LONG Gone/
I know this pain, i know this insanity.
I 'function' thru the days.
i have been thru 2 husbands and a mother and a father cross over and THATS A PIECE OF CAKE COMPARED TO THIS.

I had some help from Compassionate Friends. they are an organization for bereaved parents. at least you find out you are not alone.
also. www.dailystrength.org has some great ladies called ForMomsOnly on there and they help me.


I send you my love and i understand.


marianne aka mari333

[auntAgonist]

29. I think of you often Mari

:hug:

I have never lost a child but I've been very close to someone who has, still I cannot imagine your pain.

aA
kesha

[Mari333]

30. thanks . i dont believe in death, i think they are more alive then we are

hugs

[demwing]

31. Thank you.

I will check out that site :)

[demwing]

32. I had a dream yesterday

that Ian was alive, and needed my help - in some indeterminate, fuzzy way that can only happen in a dream. He was leading me through some dark hallways, telling me "go here" or "go there" and in the end, we managesd to accomplish whatever it was that he needed, and he gave me a hug. Then, still in the dream, he vanished, and I remembered that he had been dead for over a year. I realized that the whole endeavor had been in my imagination, and I began to cry. That's when I awoke from the dream.

Somehow, through all of that, I came away with a revelation - it is not my son's death that torments me. I feel the greatest loss I have ever felt because of that time, but that loss is not the source of the grief I still feel.

My real grief comes from watching my son die slowly, and knowing that there was nothing I could do to take away his pain. I feel like that knowledge has ripped out my sense of hope. Life is a game, and we all lose in the end, because we all die. We don't keep our money, our toys, our clothes or even our names. We get nothing from this game, and it takes everything from us. What happens in the next election is ultimately of so little importance that it might as well not happen at all. 100 years from now, or 100 * 100 years from now, our politics will be notes in a history book, or forgotten altogether, as will the details of our lives.

Why do we continue to play at a game that we are destined to lose? We should stop preparing for our future and begin preparing for our death.

The future is a mystery, death is inevitable. It is the only thing, other than birth, that every person on this planet shares. Whatever happens after death is the sum and reality of life. Do we face hell, or heaven, or reincarnation, or nothing? That is the only real question that I see worth answering.

How did I pulled this thought from that dream? I don't know. Is it the message I should have taken? I can't answer that either.

But is it the truth?

[RevCheesehead]

33. demwing,

your message hit home with me more than you can know.
Right now, I am watching my Dad slowly die with Alzheimer's, and there's not a goddamned thing I can do to change that.
Today was not a good day. He fell asleep halfway through lunch, and went back to bed. I cannot expect any more, but I can expect to see a lot less in the days/months/?years? that we have left together. Once I got home, the tears began again.

I believe dreams do contain important messages for ourselves. And the message you seem to have received is that you can't beat death at it's own game. That's true. But what you CAN do is to not let death win, by focusing on life. YOUR life.

Your son wants to lead you through the "dark hallways." You don't have to stay in the dark. He is no longer in pain, and wants you to know that he loves you (the hug!), and he wants you to go beyond the darkness. Your son's life on earth ended, and that's the horrible truth. But your life did not end - it continues, and there are other people here on earth who love you, and need you to live, to help them, to be with them.

I don't pretend to know the answers... I'm simply another person along the journey who has shared the agonizing pain that comes with death. But I also know that this group exists because there are so many of us who are not only looking for answers, but also trying to keep going, looking for meaning, and hoping that in the sharing of our stories, we may find a little of our story connected to another's.

:hug:

[demwing]

34. I need something else

I'ts just not working -all the things I'm supposed to do to heal. I go up, but it doesn't last. I crash, I feel hollow, and I'm just waiting all the time. I don't want to be a guy just waiting for the rest of my life. Waiting for tomorrow isn't enough reason to get through today.

10,957 sunrises and one less sunset.

[DollyM]

35. Demwing, I understand the feeling . . .

Sometimes I hurt so bad, I just don't think I can go. But all I can think is that there is a reason I am still here, some things I have to accomplish. Just like there is a reason you are still here. Our kids accomplished their purpose in life, they touched lives and made us better people. I think we all have to do that. I went to work last fall at a local nursing home, it is not much, just 10 hours a week but I get so much love there from the residents that it helps fill the hole in my heart and take my mind off my pain.
Don't dismiss your dreams either. I dream about my son frequently, at first he would just come in my dreams and hold my hands and smile at me. The something amazing happened to me last week with a dream where he came to me. I won't type it all out here but you can read it in the list of posts here. I have so much peace and comfort knowing that my son is still with me and cares for me and the other special people in his life. Your son is still reaching out to you and letting you know that he wants to guide you in your state of being "lost" in your grief. Just accept his comfort and let his love still guide you because he will always love you just as you will always love him. I think that has been my greatest realization in all this, death can steal the physical body but when you truly love someone and they love you, that bond is never broken.

[orleans]

36. no one expects you to be "healed" after a year

we grieve at our own pace, we adapt/adjust to the change at our own pace.

how is your son Jacksen doing? i imagine he needs you, depends on you, counts on you more than ever. don't forget that. and i'm sure Ian wants you to watch out for his brother.

don't forget whatever you were doing with him in your dream--following him through some dark passages (perhaps that was symbolic from real life?) he was grateful for you doing so--you helped him--even if it was just by being there. and he hugged you.

i believe they communicate with us in numerous ways--we just have to start paying attention--and dreams seem to be a very typical way of communication. of course we'd all prefer to have them back with us (i've said it out loud hundreds of times regarding my mother: i want you back! i want to go back!).

when i was 18 a friend of mine was killed and i had a dream about her a year later where we were talking and catching up with each other. she told me some things and i asked her if she had told her mother and she said no. i asked why not and she said she wasn't able to get through to her mom.

i'm glad you're not having that problem with Ian.

i know there is no magic timeline. i've read that people typically grieve anywhere from six months to three years. some shorter, some longer. either way--i know that we are forever changed. but of course, why wouldn't we be changed? that change signifies the impact this person had (& continues to have on our lives)--and the love we have for them.

[tango-tee]

37. Dear demwing,

I only joined DU this past January after long lurkdom.

There are no words to truly convey what I feel. All I know is that I am so very sorry for the loss of your child and by extension, life as you knew it.

I'm staying away from the old adages, although many of them are true. Please let us know how you are doing. There are so many DUers who have also suffered great losses and who are more than willing to be there for you, sharing your pain and giving you hope for a better tomorrow.

Closing my eyes, thinking of you and your children and sending my heartfelt prayers.

With much love and caring,
t-t