JonKoisMom

Thank you ladies, for being here, for listening, and for caring. I had asked Marty if she knew of other bereaved parent forums because I was feeling like no one came to this part of the forum. I tried going on one sight she recommended and I guess I must be visually impaired because ever code it had for me to type in, I read wrong. I tried a chat room on The Comassionate Friends site but I couldn't keep up and everyone was trying to talk to me at the same time and I felt crazy by the time the session was over.(I'd never been and probably never will be in another chat room!) I even wrote an email to my cousin who I thought would be most understanding because she lost her son in Iraq a couple of years ago but she didn't even respond. I must give her a major break though because she came to Jon's services and they were on Christopher's birthday. She just must not be one that can talk about it. I've read a lot of the interaction between the members here and even though you haven't lost a child, you have lost someone very dear to you and that's enough for me, at least for now. I can keep trying to connect with other parents but just having others dealing with loss makes me feel connected to someone, somewhere. My husband and I are children's ministers at our church so we aren't real connected with the adults. They have been willing but I think they all think a month or two and I should be my old self. I will never be my old self again because part of me is gone. I know you can relate to that feeling. I remember when we lost our infant son, Noah, 28 yrs. ago and a lot of people tried to tell us "Your young and can have more children". I had two more children after him and though I love them very much, no one could ever take his place in my heart just like no one else will ever be our parents or the one we lost. I feel a ray of hope because of you ladies. Thank you from the bottom of my heart. Kathy

I'm having a hard time feeling anything but I am feeling alone. I usually feel close to all of my kids but I actually feel awkward around them. I need to talk about Jon and they seem to prefer not to. About the only thing I really comfortable doing at home right now is sleeping and I have to take sleeping pills to do that! My husband just doesn't seem to get that I've lost a part of me. He liked Jon, but he was his stepchild and Keith liked going places. Jon's being over cramped his style. I guess I have a little resentment going here but I never felt like he really wanted Jon around because Jon's handicap required help and attention. I miss talking to Jon on the phone and hearing him laugh at my deliberate misinterpretations of what he was saying. It was hard to understand what he was saying on the phone so instead of saying what over and over, I would say something off the wall that sounded similar to what he was trying to tell me. We shared our faith too and would have times of just talking about the Lord. His presence is a big void in my life and I'm frustrated that I can't feel better to grieve for him. I know I'm not alone but it sure feels like it a lot of the time.

Hi Jack's Mom, I'm so sorry for your loss. It really hurts, I know. I'm praying that you will find peace in your grief walk. I too would like to know just what happened to my son, he was 37 and died after a choking accident. He had cerebral palsy. I know that my son had to have suffered prior to his heart stopping for 9 minutes. Part of me wants every detail but mostly because I feel that there was neglect involved. I sit and think about what probably happened and have to stop myself because I can't stand not being able to breathe. I find myself taking deep breaths alot when I'm thinking about Jon. Maybe that's why. Jon died on June 29 so it still hasn't quite sunk in yet. You, however, have had more time for the reality to hit you and I really feel for you. I don't know if you have ever heard of The Compassionate Friends but they are all bereaved parents themselves. That means alot to me. It's difficult for me to hear people say that they know what I'm going through if they never lost a child. I had a friend whose son was murdered several years ago and I remember telling her, even though I too had lost a child (my infant son, Noah died from SIDS 28 yrs ago), that I wouldn't even try to tell her that I knew what she was going through because every cause of death has it's own unique circumstances. I knew what losing a child felt like but to have one taken violently, I knew nothing of. I haven't lost a child to an auto accident. 2 of my other children were involved in one once but nothing like your loss. I just want you to know that I'm here for you as are many others. You and your other kids are in my prayers.

Mardy, I'm really glad to hear those statistics. That sure wasn't the message sent 28 yrs ago. I know from my own experience that I needed to talk and my husband didn't want to, which, when I was much younger, I felt like he didn't care what I was going through. Of course, I've since come to understand that we all grieve differently. This time it's even more different than when our Noah died because Noah was his son and Jon was his stepson. Jon had a really hard time accepting Keith in our lives. Eventually he called Keith Dad but they were never what I would call close. He was a real trouper staying with me at the hospital but hasn't been much support since. I've learned to accept the differences but reaching out to others is what helps me deal with it. Thanks for sharing about the statistics. Life is hard enough after loss without the marriage being lost too.

Hi Shelly, Thanks for your kind words. Jon was such a remarkable young man. Even though he was bound to a wheelchair and needed help, he graduated with his High School class and even went to a community college for two years. This was not an easy task as he had to type all of his work using a headstick. He always had compassion for others and loved people. I think that makes it even harder to think that no one helped him. I've seen other people with diabilities that acted like everyone owed them something and really came across as jerks but Jon was so totally opposite. He made the best of the life he had and always tried to help himself if possible. I know that letting him go was the what we had to do for his sake, but had he received CPR and someone had cleared his airway, he very well could have been here today, his smiling self. I'm still in shock at this point. I cry but it seems like I've always got something distracting me from the grief. My husband just got out of the hospital from having a TIA. He had a full stroke in July of last year so this was scarey. He recovered from the bigger one but he is so much at risk. Then my Granddaughter's Dad, who I adopted in my heart when he was with my daughter, got hit by a car and was left for dead. He was in a comma for a couple of weeks and on top of that, he had Rocky Mountain fever. He ended up losing half of both of his feet and half of one finger. When all of that happened, I felt like I was losing another son. I hadn't talked to him since they split up in Jan. and didn't know if he would even want me to come and see him. He was on the same floor as my husband so I just decided to go for it. He was happy to see me and I him. I told him about Jon and how I felt when I heard he was not expected to live. I did take the step to get in touch with The Compassionate Friends and they sent me a lot of material. I want to grieve for my son. That probably sounds crazy but I feel like I'm just not deep enough into grief to truely deal with my loss. That's why I keep coming back here to face it.

I received the Coroner's report regarding the cause of my son's death today and I'm not satisfied with their findings. Jon had Cerebral Palsy, yes. We understand how it's possible to choke on food. I know that was an accident. We already knew that the lack of oxygen to his brain caused him to be brain-dead, and he asperated meat into his lung while being recessitated by the paramedics. The Coroner decided to deem his death an accident. What upsets me and the rest of the family, is the 9 minutes that his heart was stopped. Everyone knows that people working with special needs people need to be state certified in CPR but when I was told that nothing was done from the time he went down until the paramedics arrived...Even his State Case Mgr told me that the report given her was that the 911 operator told them not to do anything. There was no living will. My son loved life, he was happy to be back near family. To think that who knows how many people just stood there and watched him stop breathing for 9 minutes, and no one helped, in my mind, is at the least, gross neglegence let alone a lack of human compassion. I'm really struggling with this. From the time Jon was 7 his grandparents raised him because he needed stability that I knew I would not be able to give him after my divorce. They are now in their late 80's and 90's and I have to think of what a lawsuit would do to them, yet, I feel like there needs to be justice for Jon's sake. I know that nothing will ever bring him back but I also know that I don't ever want another family to lose someone so precious to them because somebody froze on the job! I understand that the Coroner only had the facts at hand to work with but someone has to know what happened. Why would the Group home tell the Case Mgr. that Jon was ok, they were just running some tests? None of this makes sense. Jon is gone, we are all devestated and whoever was supposed to help him just walks away? Those 9 minutes will forever haunt me because if ANYONE had done the hemilich and administered CPR during those 9 minutes, my son could have been here now. If I didn't write this out, it would be playing over and over in my head even worse than it will.

I've been wondering why I haven't been overcome with grief. I loved my son very much. Then, as I was thinking about him yesterday, I realized, I'm in denial about his death. I was there while he was dying, I was running my fingers through his hair when he took his last breath,yet now my mind is not comprehending that he is really gone. Jon would sometimes go a month without calling or coming over. We work a lot and never knew when we would have a weekend off to have him over and then there were his special needs, where I would need one of his brothers to help me and we had to work around their plans. It's like he is just at his place. It's crazy because I did so much for his Memorial service and I even carried the beautiful box that his brothers made for his ashes. I just picked out his headstone but my mind just isn't cooperating with reality. I know that denial is part of grief but I think I would feel more like a loving Mom if I was able to grasp that he is gone and cry more. I know it's a process but I feel like a failure as a Mom that I'm not overwhelmed. Here I've been looking at my other adult kids and thinking they were in denial and we all are! I know Jon's death will be especially hard for my son, Jason because he was in another state when Jon died and because of the autopsy, he decided he didn't want to view Jon before the cremation. This reminds me just how powerful our minds can be. When my baby, Noah died years ago, I had taken my husband to work that day to use the car but I couldn't remember why I needed the car. For months I tried to remember to no avail. About 6 months later I saw a calendar and remembered that that day I couldn't remember was the day we had a baby shower for my friend who was pregnant at the same time I was. I guess I just couldn't handle knowing at that point of time. I don't like denial. I live with a family full of it and it really bugs me. I hope it passes soon.

Marty, Thank you for your response. It came at a good time as my son, David, and I just came from the cemetary. We were placing an order for Jon's headstone. We are having the words Home Free put on it because he can walk,run, dance,talk, and everything else he was not able to do in his earthly body but we still miss him so much. As each day goes by the reality sets in a little deeper. Thanks again for making me feel welcome here.

Hi, I just want to assure you that all you feel and are going through is "normal". I'm here to greive the loss of my adult son but I also have lost an infant to SIDS 28 yrs ago. Before that I had a miscarriage. I had taken Noah for his 6wk checkup and got a clean bill of health. I remember after my miscarriage thinking that if I just get full term with my next child everything will be ok. Then Noah was delivered by emergency C-Section 9lbs 7oz. Surely to be a healthy baby. The day of the night that Noah died, I had taken my husband to work that day but for months could not remember why. I had seen a Quincey show about crib-death. Never heard of it before so I didn't worry about it like a lot of Mom's do but God, in His mercy, prepared me. A couple of days later, my husband found Noah dead in his cradle. I still remember he was wet and cold so I changed his diaper. I read everything I could get my hands on about SIDS and my husband and I went to a bereaved parents group. That really helped because there were parents there who had still-born children all the way to adult children. Those who never held their babies alive or only had their children for a short time, we never got our memories, our loss was what never could be while those who watched their kids grow up had more time with theirs but they at least had their memories to hold on to. We found out that we all had the same thing in common. We lost our child! I look back at that season of my life and it was horrible. I got pregnant with my next child within a month of losing my Noah. It was very hard for me to bond with Jason because I was so afraid I would lose him too. I elected not to get him a monitor because our group had a doctor in it and he told us that if it was SIDS there is nothing we could do. I couldn't bear the thought of watching my son die and not be able to do anything. After that I had a beautiful daughter and now have a beautiful granddaughter. 28 yrs later, I got a call from an ICU social workier,telling me that they needed to have a meeting with Jon's family. My oldest son, that I had when I barely turned 17 was born with Cerebral Palsy due to complications at birth. He was very intelligent but had a hard time expressing it because his body was physically messed up. He couldn't talk well, he needed to be fed and helped with bathrooming, showers, etc. The original call we got, was that Jon was out to eat with his group home and choked on some food but he was ok. He just wasn't waking up from some medication like they wanted him to so they were keeping him another day for observation. So when I got the call from the Social Worker, not even catching that it was from ICU, I thought, oh he's waking up and they don't understand him. So I agreed to go to the hospital that night because his Dad and Grandmother were going. When I got there I was told that they had done an EKG on Jon and he was brain dead. No response and that he had not woke up at all since he had been there since the day before. All that, to say, 28 years later, I never left my son's side. I was determined that I wouldn't allow him to die alone. God in His mercy, gave me strength that 29 yrs ago I didn't have. Grief is hard. The hardest times we will ever go through. I loved both of my son's the same. Noah never got to live his life and Jon's was cut short. It still feels the same! Painful and sometimes, overwhelming but if you keep moving through it, it will eventually get less painful. I never got over losing Noah. I was an over-protective Mom because I knew first hand how fragile life is but it did get easier-in time. All this with losing Jon has reopened some wounds that were long ago healed. My other kids could never replace Noah's place in my heart and after counseling when Jason was preteen, I built a great relationship with him. We need to seek out whatever help we can to be able to balance reality vs. our fears. I'll be praying for you and your husband. One thing that really convinced me to get help when we lost Noah was when we were told that many marriages end after the loss of a child because the couple can't communicate because their grief is different. Hope by this posting that you are getting the help you need. Kathy

Em, I know I just answered one of you other posts but I can relate to your families response. When I lost my first child to SIDS 28 yrs ago, my own Mother kept telling me that I needed to get over it. It hurt so deeply. And as I told you, before, being a Christian and needing my Lord, I wasn't allowed to talk about God around my Grandmother or my Dad because it was taken as "preaching" at them but STILL I felt I needed that connection with my family. When my baby died, my parents came to our house and took us to their house. That happened on a Monday but come Wednesday, I HAD to leave there and go back to be with my church family because they understood so much better. I will say, that people saying the wrong thing to me, like "you'll be ok, you have other children" or" God made a mistake and sent this baby to the wrong body"was much easier to have grace toward then the avoidance that came just when reality REALLY hit. When we needed people the most they avoided us for fear of saying the wrong thing. That hurt more than hearing their "bad things to say to a grieving person". This time around, I've made a point of letting people know that just being there for us is what we need. To hug us or cry with us just like your friends are doing but the avoidance makes us feel like we have a disease or something. We actually stopped going places so we wouldn't make everyone uncomfortable. The whole reason I decided to join this forum was to have a place where people understand what I'm going through and I can share and be myself without upsetting my family, who are all grieving in their own way. Honestly, Boo was right about you and her Dad's. Not all of us were blessed to have that kind of Dad. I always hoped my Dad would go before my Mom because he was a grouchy old man and he liked to play head games with me. But God had a different plan and I ended up being the one to go and stay with him while he was dying.( He wouldn't allow Hospice to come except for the nurse and DR). I grew to love my Dad during that time and got very close to him. He was still a grouch but I understood and loved him through it. This valley is yours and no one can walk the path before you but you. Just be yourself and draw from the support that you DO have. Kathy

Hi Em, I'm new here. Not to loss but to the Grief group. I'm actually here to deal with the loss of my 37 yr. old son, Jon but I lost both of my parents in Hospice situations. It's been 14yrs since my Mom died and 9 yrs. since my Dad. I remember the time with my Dad the most. I had a lot of issues with both of my parents from my childhhood but when their lives were nearing an end, I was able to forgive and love them through. I was reading what you said about wanting to reply to your Dad. I have to be upfront with you that I am a Christian and lean on my faith, especially right now. After saying that, I was watching a Minister on TV after my Dad had died and he was talking about unresolved issues and when he suggested a way to say what I felt I needed to say and never got the nerve to, it really helped me. He said to put a chair, or pick a chair in a room and close your eyes and imagine your loved one sitting there like you had seen them sitting before and just pour out everything you wanted to say to them. At first, I thought it was a dumb idea but I was feeling desperate, so I did it and it helped me. Maybe I was drawn here to share that with you. I don't know but when you see someone in pain, you want to share something that helped you. I hope you find a way. I have written letters to people who are no longer living as well. I think it's just getting it out of our head so it doesn't just keep replaying so much. Hope it helps. I feel for you. Even though I had a much different relationship with my Dad than it sounds like you had with yours, I had to grieve the loss of what never was and what never could be with him. I know it's hard to comprehend but the pain will get much duller over time. Kathy

I'm so sorry to hear about your Corey. We all know that parent's aren't supposed to have to bury their children. I have two deposits in Heaven. 28 yrs. ago, I lost my baby Noah to SIDS when he was 7 weeks old and June 29 of this year, I lost my oldest son Jon,37, to a choking accident. I can tell you from the first loss that though your life will never be the same, the pain will become duller over time. There are still all those monumental times that I get really sad over Noah, when he would have started school, when he would have graduated High School, etc. but Jon is a totally different situation but yet the same pain. My husband and I were encouraged to go to a Bereaved Parents support group when Noah died and back then it really helped. Some of the folks had lost infants and some adult children. We never got the chance to make memories and they had all those memories to cherish but also to work through. With Noah, I had to know everything about what took him. I read so many horror stories of parents who were accused of killing their babies because they tried so hard to recessitate them but yet with Jon, who was born with Cerebral Palsy and was totally dependent on someone to feed him and do so much of his care, I'm just waiting. Waiting to see what the Coroner's investigation reveals. There are so many people I have to consider before I could start an investigation into his death. His elderly grandparents who raised him from the age of 7 1/2 when his father and I divorced, his Bi-Polar brother that is very angry right now. This kind of loss is so hard. I too work but find it very stressful because I have such a difficult time focusing on anything but my son, and his siblings. I'm thankful that we can come together on-line and share our grief. I work strange hours and feel more comfortable this way. I will be praying for you and your family. I'm also having the lack of sleep. I wake all hours and then have to get up and go to work. I think sharing helps us see that there are others out there that could maybe not feel quite so alone when we share our experiences, fears, and eventually, our hope. Kathy

My name is Kathy. I think for me, right now, the worst part of Jon's death, is the not knowing exactly what happened. We got so many conflicting stories about where he was, who he was with, etc. Jon was 37 years old and had Cerebral Palsy from birth. He was very intelligent but he required help with almost everything he did. Eating, bathrooming, showering, etc. Yet he was and wanted to be very independent. He drove his electric wheelchair to church and rode a bus to the library. He had recently gone into a group home after years of having his own apartment with Providers. From this Group Home, he was taken to another facility for a Day activity(this is where the part about having no info begins) where someone took him out to eat. While eating, he choked on food and went down. We were told that he was totally brain dead and that his heart had stopped for 9 minutes. Because it only took 4 minutes of his heart stopping at birth to put him in the physical condition of the Cerebral Palsy, we made the decision that we had to let him go. His death is currently under investigation by MEO. I stayed with Jon from the time I got to the hopital until he died. Through the many trials of this life, I've become what others call a very strong person. I'm generally not a person that cries. In my life, my tears have usually been due to overwhelming frustration where I just couldn't take anymore. This is the 2nd one of my children I've buried. 2 deposits in Heaven! One of my other sons, Noah, died 28 yrs. ago at the age of 7 weeks from SIDS. I know the grieving process and I also know that this is very hard on the rest of my family. I have 2 sons, 34 & 27 and a daughter 24, all of which live at home. I felt I needed to find my support elsewhere because we all grieve differently. I work full time plus overtime and this looks like the best option. To me, I am a Christian and Jon was too, so I beleive he is Home Free and able to do all those things in Heaven that he could never do here in his body but I'm still his Mom and I miss him so very much already! I feel like I've been in a Protective bubble and it is starting to deflate. I know a lot of things about grief but my Knower doesn't always help. The difference between the "Head" and "Heart". Thanks for listening.