Good to hear from you Robin and thanks for the hugs!

Dan, just thinking about you, I hope you are "ok".

Doing Danny's final income tax, I guess this the final obligation to this world.

Hi everyone, been having a rough few weeks.  Sending you all hugs.  Missing my son so much today. 

After almost 3 years, My son died the end of May 2009,  I got a call today from the Autism Tissue Program.  His brain was donated for researching Autism and Epilepsy,

I was shocked because I thought they would come within weeks of the death to interview me... but waited until today to call me to set up an appointment for May 16.

She said I had sent such a large amount of medical data and his IEP's that it helped answer many questions.... but they may have additional questions to ask and they are compiling information about where the research has gone with his donated brain.   My son was a total organ donor except for his lungs were not used.

I am interested to get this information.... but it also continues to remind me that he is gone.... not that I don't know this... it just reaffirms it....  I don't know how I feel and I hope I stand up to the visit.... I worry I may fall apart... I guess I just THINK about Niles and this whole concept....   I sure do Miss him EVERYDAY.... I still can not wrap my mind around this.... losing a child...

I noticed that it has been kind of quiet in this group... and yet we face another holiday.... the one where HE has Risen and gives us hope that Our Loved Ones have too....  Yet I just can not wrap my mind around any of this....

Hey everyone. I am going through another phase of breaking down in public places. I get so overwhelmed, I start to explode into tears. I think I may have to stay home a little more for right now. Today, when I was in a store, a young man caught my attention and I became fixated on him. He reminded me of my son sooooo much. It's like I became a stalker, I found my self following him down every isle that he was stocking the shelves. He would occasionally give me a polite smile, poor thing probably thought that I was flirting with him. Finally, I apologized to him for staring and I explained that he reminded me so much of my son. He happened to be the same age my was when he passed away. My eyes welled up with tears and I told that my son passed away. I didn't mean to make him feel uncomfortable, he gave his condolences. I wanted to give him a hug so bad but I didnt want him to think that I was a total nut case.  I thanked him, and quickly left the isle, as I walked away, I just sobbed and sobbed. It's like every "boy"-young man I saw, had my son's face, it was like I was hallucinating. I hated that feeling. It's like I was envious how all of their lives were going on in the world and my son wasn't. I usually can hold back my tears until I get out of the store but lately I can't. I sat in my car and began to hit my head with both hands........not to hurt myself but as if I can beat the thoughts out of my head because surely I must be going crazy because nothing happened to my son. I tell myself that its all my imagination and I need to snap out of it. 

Thanks for listening

Karen,

I see boys my son's age and wonder. I generally can save my grief for the church garden and water the roses with my tears. I think you must find your special place to grieve; grieve hard and it maybe better for you in public.

I am toying with becoming a Boy Scoutmaster once again. I miss being a father and mentor; I think it will honour Danny's memory since he and his brother were both Eagles. BSA has approached me several times about being a commissioner as well; considering.

Karen, I spend alot of time at home just because of that same reason.It crushes me to see the Kids as I call them..If its a teenage girl all I think of is did she know my son? If its a boy ..Its boy he sure looks like my son or maybe they where friends , It is so hard to know everyone has moved ahead and I'm frozen in time. I usually spend alot of time crying after I have entered a store or before I go in. I have decided I really have not accepted he is gone.so you are not alone in feeling that way.

I spoke with my minister Monday morning before work, he and Danny worked with the youth group. Therefore, he knows Danny well. We both identified my problem "I miss being a father". 

Hey Dick, thanks for your support. You are right. My 'special' place is usually when I'm in my car alone. Maybe I shouldn't hold it in out in public, I just feel bad for the people that feel bad for me when they see me explode into tears. Sometimes I just feel like I need so many hugs.

Hey Michelle, thank you also for your support. I just feel like I'm crazy......maybe, perhaps, that is because I am "crazy". I think my biggest problem is that I can no longer share my thoughts with my family, including my children because they just don't get it. I know they worry about me but it hurts me that I can't express what i am really going through. Thats why I am so grateful for you and all the other members, even though it saddens me at the same time that such a group exists. In a perfect world, we would never know this pain.

Michelle thank you for the kind words yesterday.  Everyone, I have lost family members prior to losing my son.  I grieved for a little while but part of me just moved on because I didn't get it.  But when I Iost my son, the bottom fell out, my heart broke into a million pieces, I GET IT NOW!!  The overwhelming feeling of loss.  I truly understand NOW what it's like to lose someone so dear to you.  One thing this has done to me is if someone I know loses someone, I know what they may be going thru.  I know what NOT to say to them.  I know to just be there without saying anything, just being there to listen is one of the most precious gifts a person can offer another person in this time of need.  

One of the other things I struggle with is that my son was still living at home since he was only 17.  When he passed, my husband and I were also thrown into the nightmare of empty nest syndrome on top of that.  When the house is so quiet, it just throws me into a depression with the reality my son is gone.  It's like a double sword reminder of what has happened.  Karen I too sometimes feel like I'm going crazy but I know it's just the craziness of grief.   Special hugs to you all.

We take one day at a time knowing some days are awful, some days kind of ok, and once in a while we have a good day.

hi all my dear friends, i just want to tell you that tomorrow i will be going in for surgery. severe breathing obstruction due to an intruding bone malormation. total nasal reconstruction, plus grafts of cartilage to help broaden the very narroy nasal passages.

We are Jewish and it is now our Passover time, and Jessy died during our Passover time, exacty 4 years ago, same hospital.  The kids are freaked, family trying to console them.  i am not afraid.  Please pray for me, my friends, that all will go well.  i will let you know as soon as i can, how things went. lots and lots of love to you, my deeply special friends. and thank you for being there. lots and lots of love, Steph xxxx

Sending prayers and hugs your way Stephanie.  Wishing you a speedy recovery after your surgery.   

Hey Stephanie,  I wish you well.....please keep in touch.

Michele & Karen, it is definitely bittersweet to see Sy's friends move on, get married, have babies & buy homes.  While I am so very happy for all of these young people, it is heartbreaking that my Sy guy is no longer here to do those things, or other things he wanted so badly to accomplish.  It is coming up on 4 years in May, and already the dread has begun. I am not sure why this happens, as they are no longer here & every day is painful. Why should this one day be any more painful than the rest??  Dick, I think your idea to become a scoutmaster again might be perfect for you; you will know once you become re-involved. I wish you the best. Sending love to everyone during Passover & EAster time.

Hey Lorraine, haven't seen you on in awhile, I hope you you are as "well" as you can be. For me, it's like the world is going on while I am stuck in the days when my son was in ICU until he passed away/crossed over. Even though the days, weeks, months have now turned into years, I still relive that horrible day, over and over again.  I can't accept it and move on, I just can't. I still make an effort to avoid counting the time that is passing by because then it would have to be "real". I don't know if I will ever snap out of it. I still feel extremely angry, mostly towards the people that are responsible for causing all of this because they still haven't been held accountable.

Sending many hugs to you and everyone.

EASTER.... A time when we should be reassured of Life after this life....  in Glory...

HE  Assures us today..... yet it just seems so EMPTY for me .... Easter just doesn't seem like Easter..

Karen, I think of friends here, sometimes it's just so exhausting to get through the days that I don't even have energy to check in. and some days I feel like "what's the point?" as it is such so painful that I haven't been able to do much with words lately. I know that even my kids wish things were easier for me & now I try not to bring things up with them too much; which is hard as Silas is on my mind and in my heart every single day. I do know what you mean about reliving things; with the cancer Sy fought for almost 8 months, so there are many many memories for each of those months.  He passed on in May, and in April the doctors told him there was no hope left. UGH.  I can't imagine what it felt like to be 29 and hear those words. The whole thing was & continues to be a shit show.  I am having trouble getting myself together to do anything today; just got out of bed which is very late for me.  I hope friends here make it through the day. sending love

Hey Lorraine, sweetheart, I totally understand. A shit show is a understatement! It is hard to find the words sometimes. I just wish I could take everyone's pain away and get all our children back...happy and well, enjoying their lives. I just got finished sobbing with one of my nieces that is extremely close with my son. We tried to console each other and then she calmed me down by sharing son funny memories she has from when they were very young.

Sending love back to you.

Setting in Hobbs, New Mexico alone. Sleeping; started dreaming about my son & woke up. It's 3:00 A.M.; can't sleep.

A few days ago, I set down with a pen and paper and started writing poetry. The poems just flew out of my pen. It was quite amazing since I am not quite that creative and prolific. I still want to make a song and record it about Danny. Maybe I will have something by August 14. I don't know if this is healthy or theraputic, but I must do it.

"I Water the Rose Garden with My Tears"; I am living it baby.

Dick, I have gone thru this transformation similar to you this past year.  I have begun playing the piano again to let my grief out.  In addition to this, I have written many poems.  I feel like at time my son Sam's hands are guiding me with the writings and that he also plays along with me when I play the piano.  He played the guitar and the piano.  I find doing creative things kind of heals my heart sometimes.  Sending BIG hugs to everyone here. 

So after almost 11 months, the hospital FINALLY has Roxanne's autopsy finished. I go today for a meeting with the Drs for them to explain the findings.  I have to admit, I am more than a little apprehensive.

Lisa... I am meeting with the Autism Tissue Program to learn what they learned from my son's brain donation.....I can relate to your feelings... I also heard that Autism has been connected to women with diabetes..... yet... does it even really matter?

Lisa, How did it go today?  I hope the answers you need are answered.  Lean on God to get you through.  Isaiah 41:10.  Keeping you in my prayers.

Brenda

Hi Everyone, have not written on here for awhile. I sometimes get tired of myself saying the same old thing. I managed to get through Easter, it was nice having all my family at home for the weekend but missed Zach so very much. My husband has been going to a therapist, it seems to be helping him a little. I usually do better with group sessions, but the group I have been going to the woman who is the Chair seems to get distracted and talks a lot about things that are not related or helpful. She has been through a lot in her life, but I wish there was a way to let her know I think she is not being helpful to others that go there when she goes off on unrelated topics. It ends up making the meeting last so much longer than it is supposed, and I think it puts others off. Any suggestions from anyone on how to handle this? It is so important to us that need somewhere to talk about our grief, but it is getting so frustrating. Big hugs to all, thanks for always being supportive and knowing what to say. Robin

Thanks for asking Brenda. It went well actually and did give me a sense of closure and a type of peace.  The Drs assured me that the autopsy results bore out the fact that even if we had placed Roxanne on ECHMO life support, she would have still died.  It might have bought her an extra hour or two but that would have been all.  The infection and subsequent shock had damaged and/or destroyed all of her major organs. There was still no indication of what caused her gastroparesis to begin with and I expected that, so no big shock there.  

Hi Robin, my advice on how to approach the subject with your facilitator is to sit down and write a letter.  It might take awhile to get it out the way you want to say it, but once given she can read and process it before you see her again.  When we talk to someone if we say something that upsets them they get hung up on that one thing.  The rest of what we say gets lost. A letter is very powerful because they can read it again and again without getting stuck on just the negative.  You can explain how much you were getting out of the sessions until things changed.  You can express concern for what she is going through and you can use that to show her how much a good session can help the others like yourself who are hurting in a different way.   I hope this helps you get back to where you were in your therapy. 

Thanks Anna for your advice. I have been having a really hard night tonight. I had dinner with my son's girlfriend tonight. She wanted to be the first to tell me that she is developing feelings for someone else. I am so glad that she felt she could come and talk to me, and I put on the "mask" and told her how she deserves to be happy and that Zach would want her to be happy. I do believe all those things that I said to her, but when I got home I just cried and cried for hours. I think it just was another sign that he is definitely not coming back. Every time something that shows me that this is all real, that I can't change what happened, its like I get punched in the heart. Has anyone else gone through this. I think she realized after that it might have hurt me, and she assured me my son will always be a part of her life, that she will always love him. I feel bad because I think I made her sad, its just so f***ing hard. I am so mad that this had to happen, life is just so unfair. I know you all understand and won't think I am a terrible person for how I am feeling. She is very close with one all my daughters, but one in particular. I asked her to please tell her because I didn't want to know and my daughter to not know. I'm afraid it is going to have the same effect on her as well. I told my son's girlfriend that I knew eventually this would happen, and it should happen. She does deserve to be happy, but it is just so hard. They should have been able to have a life together, and get married and have kids. I'm sorry, I just don't know who to talk to. I don't want to tell my husband because I know it will upset him for the same reasons it is upsetting me. We just want to be able to fix this, and make Zach come back to us. I know its not going to happen. Just another hurdle I have to go through, sometimes I just get so tired of hurting. Hugs to us all. Robin

Oh Robin I feel for you.  And I understand.  My son that died was married after he was injured and they had no children.  On day his wife will meet someone and go on with her life without my son.  It is not a day I want to come, but its like you say she deserves to be happy again.  I want that for her but it will just drive home all that should have been and wont now.  Hugs of understanding.

Lisa,

I am glad that you were able to get some answers and peace from their findings.  We have watched all the TV shows that evidentially set unrealistic expectations that autopsies are done quickly and provide ALL the answers.  I still will never understand why it takes so long. 

A couple of years ago my Mom went into septic shock, she responded quickly and she is well today.  However, my sister and I just didn’t grasp the seriousness of her condition.  Mom was out of it and talking about crazy stuff.  Well in our defense, it was the middle of the night and my sister and I were down right slap-happy.  Everything was funny and we laughed harder than I had in years.  It has been only recently that we realize how serious going septic is – I wish someone would have told us and we wouldn’t feel so guilty now.  The only good thing is Mom laughs with us about that night and praises the Phenergan and other drugs they had given her cause she was quite happy.  Got to say I didn’t know that being septic could do such terrible damage to a person’s organs.

Maybe we can learn something by the way Jesus made it through the terrible death and torture he suffered.  The Bible says at Hebrews 12:2, 3 “as we look intently at the Chief Agent and Perfecter of our faith, Jesus. For the joy that was set before him he endured a torture stake, despising shame, and has sat down at the right hand of the throne of God.  Indeed, consider closely the one who has endured such contrary talk by sinners against their own interests, that YOU may not get tired and give out in YOUR souls.”  Jesus saw the end result – he looked to the future and the joy of his own sacrifice buying all mankind from irreversible death due to sin – and being back in heaven with his father – “the joy that was set before him”.  Jesus ransom and our faith in that sacrifice puts us in line for the blessings he and his father’s Kingdom government will bring.  (Revelation 21:4) “And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”  This does not magically take the pain away but it is how I make it through. . .   Maybe it can help you too?

(1 Thessalonians 1:1) “May YOU have undeserved kindness and peace.”

Your friend,

Brenda

www.grief-and-comfort.com

Thank you Brenda.  I know what you mean about not realizing the seriousness of sepsis.  When I took Roxanne to the ER it was 4am on Monday morning.  She was conscious, talking, coherent.  By 7am Monday she was on a ventilator and 24 hrs later she was gone.  It happened that fast. And the really had part was that she was finally turning a corner with her GP and seemed to be getting better, stronger. 

The other thing the autopsy showed was that the sepsis came from her PICC line and no other possible place. And the Dr stated that she believed if the line had been removed on Friday when it first came into question, that I would still have my daughter.  So now we are dealing with THAT anger.

Robin, I know how you feel.  I went through something similar.  My son was so In Love with this girl he had met.  I remember a month after his funeral, she had changed her facebook status to in a relationship and posted a picture of her and her boyfriend.  I remember feeling like someone ran a knife thru my heart.  I was so angry... I remember unfriending her in facebook.  All I could think of was how hard Sam was trying to impress her, that he felt she would be a great influence on him since he was trying so hard to be off drugs.  I remember, just crying that evening after I defriended her on facebook.  Deep down I wasn't really mad at her but just the fact that Sam never got a chance to prove to her how much he loved her.  Argghhhh....    Hugs to you all.  It's rainy and depressing outside and it always makes me feel even more sad.

Rosie and Anna thanks for your comments. She did talk to my daughter that she is especially close with, and my daughter is feeling the same way I am. It is one thing to tell me us that you have some one you may begin dating, but to expect us to really want to hear about him is something else. I wish nothing but the best for her, I do love her like a daughter, but I can't help feeling like my heart was being pulled out of my chest. It has only been seven months, I personally don't feel like she has given herself enough time to actually grieve. She has kept herself so busy, and not stopped long enough to feel. The same thing happened after my brother died, my sister-in-law met someone after about six months and got married soon after, it did not turn out well. Like I told my son's girlfriend, it doesn't matter who or when it would happen, it is going to be hard for me no matter what. It is just another thing that happens that makes me admit that Zach is never coming back. Life really sucks sometimes.

I am tired, so so tired.  Went out for dinner with my daughter in law.  I really dont know what she is to me now that my son is gone, but she still feels like my daughter in law so thats what I will say.  She started talking about how he is visiting her and he moved her cigarettes to the opposite side of the coffee table.  I know some of you here believe in these visits but I dont.  I know that we dream of our passed loved ones, but I do not believe they are able to move things.  Im allowed to believe what I believe.  Anyway, I dont think that is why, but I started to cry.  It has been two years since he died and I miss him so so much.  I cried, she apologized for upsetting me, I felt guilty for causing a scene and making her feel bad, and I came home feeling such a fool.  Two years.......  will it ever get easier?  Im beginning to think it wont and that scares the hell out of me. 

Lisa,

That makes me mad too! 

There are wrongs committed against ourselves and our families that we can tragically do nothing about - BUT then there are things we CAN do something about.  I have no idea if this doctor's decision is criminal or just a bad guess.  Do you have an attorney you can ask?  No matter what the attorney says on the matter decide ahead of time to leave the matter in the pending file.  Meaning that the issue is important and you have the information in an important place but you don't have to carry the weight of the file.  The file is pending and the issue with its facts can be extracted from the file whenever needed.

(Proverbs 14:29) "He that is slow to anger is abundant in discernment, but one that is impatient is exalting foolishness."  Please don’t agonize over this new information – first give it to God to carry - (Psalm 55:22) “Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.” – if you choose to give it to an attorney; let the attorney carry the burden – if you leave it all in the pending file, then leave the burden and weight of it in God’s hands.  There is no one who cares more for you than God does.  Remember, Roxanne, is his daughter too.  She was created by him and is his daughter too. (Job 14:15) “You will call, and I myself shall answer you. For the work of your hands you will have a yearning.”  These words show that God misses our loved ones too and WILL CALL them from the sleep of death.  Keep this joy before you, my friend.  (((((HUGS)))))

Your friend,

Brenda

www.grief-and-comfort.com

April is:  Autism and Organ Donor Month.... Niles had both.... But April 17 HE "WOULD HAVE BEEN" 17  He had just turned 14 forever.... in 2009.

Sending Hugs to you all.  Hope we find a little peace today. 

Thanks Rosie, I needed that.

UGH! that is my word for today... I feel so sad & depressed tonight. The anniversary of Sy's death is coming up end of May, and this is the time of the year where doctors told him there was no hope left. I can't stop thinking about how devastating it had to be for him to hear those words, to know that he would not live a full life.  It so sucks. I want him back. I don't feel like I have the energy to keep on, yet I know that I have no other choice. I feel like a bad parent to my girls, even though they never tell me that... I don't have the sparkle for life I used to have, and the sparkle I was so inspired by in my Sy guy, even as he was so very sick & in so much pain. I am finding it harder to reach those moments of peace. Tomorrow I will be going into the town Silas lived in, and will probably stop by the college where his bench is, & put sunflowers on it.  Sending love to all here~

here is photo of my daughter Jess at Sy's bench

I heard another angel mom say something today that really struck home with me.  She said, "people don't understand that we are so shattered that there is very little left in us to give away and when do reach out to help someone else, it is with great effort and at great personal cost."  This perfectly describes how I have been feeling.  It's not that I don't want to be there for my friends and family, I simply don't have the strength.  Does anyone else feel this way?

Lisa, oh yes, I feel that way too.  Some days just getting out of bed and showering saps all my energy.  Making a phone call takes giving myself a pep talk first.  Going to the store gets put off until like today, the dogs are on their second day of no dogfood except for the frozen meat log that should have been kept for cutting up for treats.  I know there are things I should be doing but it just takes too much thinking planning or doing and I take the easy way out and dont do it.  I know I wont always feel this way, so I give myself permission to just let this grief take me where it needs to for now.  I hope you are able to do that too and have people around you to carry you when you need to be carried.  \hugs