JonKoisMom

Having had a special needs child and having given his Dad custody,which resulted in his grandparents raising him. My son,Jon,had Cerebral Palsy. I was his major care giver until he was 7, when I divorced his Dad. Jon died June 29,09, at the age of 37, and I have so many regrets,even though I know he was much better off with them than with me.He couldn't handle change and he needed stability. I've moved over 30 times in the past 30yrs. He never could have handled that but I'm still his Mom and I feel like I let him down. I know he was happy but I wasn't there to see it. I still got to see him and be with him but he needed help with almost everything and I was always at the mercy of his brothers being willing to be here to help him. I understand how those feelings feel. All the woulda,shoulda,couldas will eat you alive unless you can come to terms with the fact that she is well taken care of. As to explaining to your younger daughter that she has an older sister,the day will come when you can let her know.If you have pictures of Gloria, maybe you could keep telling her now and when she's older you can explain better. My granddaughter was very special to her uncle Jon. He loved her so much. I never want Maddy to forget him. She's 2 1/2,so I show her pictures of him all the time and talk about him. Now when I cry,she associates that with my missing Jon. If you don't have any pictures,you can still talk about her. Maybe when she's a little older you can get a book from the library with pictures of special needs kids so she can see and understand why Gloria doesn't live with you like she does. If it were me, I would rather bring her up knowing about Gloria and how much you love her too than to end up like "Rain Man". I'm sorry for your struggle and sorry I haven't been checking in here much lately to see if someone needed someone to talk to. I spend most of my Grief healing at Legacy Loss of a Child. If you need to talk where you feel there is more support(I know this group is not very active),that group(and there are others there) are very active and the members are very eager to lend their heart to a grieving parent. It's legacy.com and then Loss of a Child. I'll be praying for you to find peace and have wisdom with your little one. Hugs of Hope,Kathy

I'm so sorry for the loss of your little Markay. I have two deposits in heaven. My infant son,Noah,died 28yrs ago to SIDS. He was 7weeks old and my oldest son,Jon,died June 29,09. Though my children died from different causes, as a grieving mother, I can say that I'm here for you and praying for you.In my journey through grief, I've read many stories,such as yours,that bring back so vividly,Noah's death. He had just had his 6 week checkup and was healthy. I had to have an emergency C-Section with him. He weighed 9lbs.7oz.at birth. A week later,my husband got up to go to work and found him dead. I too was breast feeding and I remember the physical pain from being gorged and the horror of walking into the OB/GYN office and seeing all the pregnant women while I was there to get something to dry up my milk because my baby had died.I even remember thinking, the last time I saw the DR he was my OB and he was happily making wagers with the other DR about how much my baby would weigh.Now there I was sitting in the waiting room and he was now my GYN. I didn't plan it but I got pregnant with my son,Jason right away. Jason could have had the same birthday as Noah if I had wanted it because I was having a planned C-section. It was very difficult having a subsequent child right away.I had had a miscarriage before Noah, and all the time I was pregnant I thought,"if I can just carry this baby to term,everything will be ok". Then when I was pregnant with Jason, I thought the whole time "if this baby is a girl, It will be ok". I had so much fear that I would lose Jason too that I didn't bond with him properly. I learned why I wasn't close to him yrs later in counseling. Now we are close and even now, I wonder how much he would have looked like Jason. All of his milestones growing up were bittersweet because Noah never got them. My oldest son, Jon, had Cerebral Palsy from complications at birth. He was in a wheelchair his whole life. He couldn't even feed himself. Jon had a good life. He made the best of it. He learned to type with a head stick and he touched many lives. Taught many people the meaning of patience. He died at the age of 37 from a choking accident. He went to lunch with someone from his group home and his heart was stopped for 9 minutes. They got him breathing again but he was brain-dead and we had to make the decision to let him go. I know they are in a better place and I will see them again. Each day is one day closer to that reunion. I'm sorry for the length of this but I guess deep down inside I was qualifying myself to let you know, we are in this group that no parent ever wants to be in but through reading and sharing and praying for each other, we will get through the pain. I spend a great deal of my evenings in another group that was recommended to me. Legacy,com Loss of a Child. I check back here to see if any new parents may need some support. Hugs of Hope. Kathy

I work in the electronics production field. My company gives 3 days bearevement. When my son,Jon,died at the end of June, I was fortunate to have the whole week off because we were having a shutdown at the time. I was able to plan 95% of Jon's service myself and make it the way I thought he would want it. My job is very stressful because my boss depends a lot on me to do things no one else gets done. I am fortunate in the fact that he is a fellow christian and big on his family. He still expects the work to be done but if I go and tell him how I'm feeling,(depressed,overwhelmed,etc)he'll stop and pray for me no matter who might be watching. There are days though,that I would just like to run out the door and never turn back but I need my income. I think it has helped me not to dwell on Jon because I have to concentrate on what I'm doing. At first, I couldn't remember things. 8hrs. felt like 18 because I would do and redo becuase I didn't remember I'd done something. My evenings are usually spent online in a forum, mostly reaching out to other hurting,desperate Mom's. I've been off for 4 days and I think I do better working.

I'm so sorry for the loss of your Laura. It's so sad when we out live our children. I have two deposits in heaven. I can relate to some of your circumstances. My 3rd son, Noah, died 28yrs. ago from SIDS then in on June 29 of this year, my oldest son, Jon died. He was 37. Jon and I had complications during his birth which resulted in him having Cerebral Palsy. He was happy,healthy, and very intellegent but needed a lot of help. He couldn't walk, had a hard time being understood when he talked, and had to be fed, showered, etc. by someone else. He went to lunch with someone connected to his group home and choked on meatballs. He went down and went into cardiac arrest and his heart stopped for 9 minutes. We were told he was brain-dead so we had to let him go. I relive all of this everyday over and over. I also have a granddaughter. She and her Mom live with us. I miss Jon very much and since I've started coming to bereavement groups, I miss Noah more too. I spend a lot of time at Legecy Connect in the Loss of a Child group. It really helps. If you need to talk, you can email me via my page. You will be in my prayers.

Hi Ted, The title of your post caught my attention so I came into this section to read it. I'm reminded of 28yrs ago when my infant son, Noah died at 7wks old from SIDS(Crib Death). My Pastor came to our house and told me one of the most helpful things in all of my grief. He told me that I was going to get angry with God and that's ok. He understands because He lost His son too. I never thought it would happen but it did and thanks to those words spoken that day, I knew that I was no less a Christian or a bad person, I was just hurting. For me, it wasn't that I thought or ever have thought that God took either of my sons(I recently lost my oldest son, Jon. He was 37.)but that He could have prevented it from happening. Over time, I realized that if Noah had not died, I never would have had my two other children after him or my beautiful granddaughter. I've never lost a spouse, though I have very much grieved two of them not really being there for me in life. I know that no matter how much we know they are in a better place, it still hurts miserably. My prayers are with you. In His Love, Kathy

Boo, You know this isn't my section of the forum but I was so excited to see your name that I had to come in and tell you that I've missed you and have been praying you are ok. I totally understand the workload. Just know that all of us in all of the forums love you and think of you often.

What a beautiful baby and her name sounds like it was the perfect choice for her personality. I am so very sorry for your loss. I have two deposits in heaven. My infant son, Noah who died from SIDS when he was 7 weeks old and my oldest son, Jon. He was 37. I can relate to your pain. This is a very good place to come to share your pain, frustrations,and though it doesn't seem like it right now, your joy. Another good place to meet other grieving parents, if you haven't already found it, is on legacy.com . They have a group Loss of a Child. I go there regularly. I'm on my way to church right now, but feel free to email me if you would like to share more. My email address is on my page. You are in my prayers.

You know, the past few days have been tearful for me. I feel like I'm now in this giant pity party. I was supposed to meet a couple of the ladies from work at our co-workers viewing but I waited 15 minutes, which felt like hours and finally went in to see her alone. Other co-workers were there that knew about my loss, I even mentioned how difficult it was for me so soon but not one of them offered a hug or to go in with me. When I saw her, it took everything in me to get outside so I could cry. I go to church and work. The one day that I could be a service, my husband decided to go out shooting with our sons. That's good for all of them but I feel so alone. My Dad was always a loner. He would go in his room and stay all day when my Mom was alive, he even had his own refrigerator in his room. When Mom died, he talked and talked, and would tell the same stories over and over. I was the daughter that would go over to take him a hamburger and shake and sit and listen. My sister would pick up groceries and drop them off but wouldn't visit. I too have been to myself for years. With all the stress and mental stuff in my family, and working full time, I haven't had energy or time to invest in friendships. When the last church I was a part of closed their doors, I decided the next church I joined would be to serve so I committed to the children. I love working with them but again I'm distanced from adults and don't have time(or energy) to go to additional meetings to get to know anyone. Now, here I sit, watching my Granddaughter crying not only for my son that died but for all the relationships that have'nt been in my life.

I was writing in my journal the other day about a major change I did with my hair. I went from a very light blonde Bob to a dark brown cropped style.(Like Demi Moore in the movie Ghost). I have never had my hair so short! Everyone who sees it for the first time does a double-take and tells me how good it looks on me and how much younger it makes me look. As I was writing about this change, I wrote that it was a pleasant distraction. I actually started wearing a little makeup and putting on earrings. If only a new Do could change our inside. I've passed the 3 month mark(I don't like referring to it as an anniversary because in my mind, anniversaries should be happy.) My son's headstone is finally in place. It hurt that none of them would go back with me to clean the mud off it and place flowers. I really feel alone in my grief at home. So, I had just enough anger in me to not care if any of them liked my hair or not because I NEEDED a change, a distraction and you know what, it felt good! When I went to the cemetery, I could imagine Jon saying "WOW Mom, I love it!" and that is just how he was. Never belittled people, always supportive. I miss him so much.

In the midst of the gloom, depression, and frustrations that I feel, is this precious little person, my only Granddaughter, Maddy. I am convinced that she is here to help me through the pain in my life. She was born out of wedlock and now she and her Mom live with us, as well as my other 2 remaining adult children. No matter how sad or frustrated I get, Maddy comes in with that "Hi Mammy" and the pain turns to a focus on this precious little girl. She is no angel. She can literally through attitude but she has so much love for me. Something that I don't really feel from the rest of my family. I'm dreading the day that they get their own place and she isn't here to cheer me up. I love her so, so, much as I'm sure everyone with grandchildren feels. A really big sparkle of joy in my life.

Today is 3 month since my son,Jon died. Then, when I got to work, I found out that a Co-worker has lost her fight against cancer. She had been with our company for over 20yrs. so she was loved by many. People were sharing stories about her and crying all day. I've been re-livng all day all that happened to my son and his brief stay in Hospice. She too had been in Hospice so of course I thought about Jon's time there. Just a really sad day.

Hi Sandy, I'm sorry for the loss of your Mom. Don't be hard on yourself. Unless there is a pressing reason, you have time to get to a point that you are ready to go through your Mom's belongings. When my Mom passed away, my Dad seemed to really be a hurry to go through her things and divide them between my sisters and I. It was hard to take anything because for us, it was way to soon. I guess for him it was closure. If possible, I would suggest that you give yourself some time to process your loss and grieve. Here you will find many people who care and will listen.

Boo, Since I have been a part of this forum, I've found myself in envy more than once when I read about the beautiful relationships that I read about between husbands and wifes, young people who are grieving the loss of their parents and the close loving relationships that they had. I know that every family has issues and we tend to forget those issues or not bring them up when we lost that person. I just try to be a peacemaker and make the best of every good moment. If it were not for my relationship with Christ, I'm convinced I would either be dead or in a psyc. ward by now. He gives me strength that I can find no where else. I will say that it's good to have people too and I will continue to post here and on the Legacy forum. I have watched the number of members in the "Loss of a Child" forum grow way too much in the short time I've been there. So many hurting people! I'm so thankful to Marty for recommending that one to me, as well as all the placed that you have led me. Helping others really helps us, doesn't it? Blessings. Kathy

Thanks for the love Boo! I feel it! No, I don't have a counselor. I have lived with stress so long that until Jon died, I just dealt with it. I can't really say much right now because our computer is in the living room and I don't want anyone to walk by and see that I'm talking about them but I do want to say, that I love my family and I have deep issues with Co-dependency with all of them. I've tried support groups but just don't have energy to try again right now. My work schedule and the fact that I work with my husband and carpool (we only have one vehicle) makes it even more of an effort to try to get help. Thanks for the love.

Hi Everyone, I've missed you! I've been working 12hr shifts and have just wanted to crash when I get home. I'm trying to deal with issues that I used to be able to deal with a lot better. I haven't dealt well with conflict since Jon died. My family is very conflictual so it's hard to avoid. All of my adult children live at home and two of them have mental issues. The worst for this is David. He is BiPolar with other multiple diagnosis. He is on several medications but always runs out before he gets them refilled and then it's another day or two waiting for verification from Terros. He is taking Jon's death harder than the other two. He was Jon's full brother and he has a lot of regrets, as do I. I had been seriously contemplating talking to an attorney about the possiblility of a Wrongful Death lawsuit. I so want answers to what happened to Jon in those 9 minutes his heart was stopped. I mentioned to David what I was feeling and he got angry about it. That made me cry which I really needed to do and I understand that he wants to protect his Dad and Grandparent any pain that a lot of questions would cause, not to mention any publicity that might be looking for a story. I still want to know the truth and at the time, I didn't realize he had been off of his meds for a couple of days. When he's not medicated, he is very difficult to be around and then he gets Jason going and then I feel like running away. Both of them live with us and neither has a job. They do odd jobs but don't make much at it. My husband is also an angry person and there is a lot of resentment from him because he doesn't believe the doctors diagosis. Jason is waiting to get knee surgery so he can work and David loses his meds everytime he gets a job and then loses the job. I know it would be great for them to be on their own but right now, I don't see a way for that. I'm so sick of feeling like a rope in a tug-o-war and now if really feels amplified. Thanks for letting me vent. I'm tired and touchy but still can't cry for Jon. Sometimes, life really is hard!

Hi Dee Gee, I totally agree with everyone else who has responded to your post. I had cousins that were in the Marine Corp. in Vietnam. One of them retired after serving 20yrs. His nephew became a Marine and died in Iraq at the age of 22. Men such as your husband, that were proud to serve should be recognized in a way that is comfortable for their family. I'm glad you at least got an email. I can't even imagine how upset I will be if anything isn't the way we ordered for my son's headstone. It's taking forever and it better be correct. What you chose as your endearment should be up to you! In my thoughts and prayers. Kathy

I went to a place that I've always loved for it's serenity. A lake in the White Mountains of Az. It was peaceful but stormy. This poem came to me there. My Dearest Jon, I know you cannot hear me, Your on the Other side, But you are always on my mind, The pain, it tries so hard to hide, It's like the building Thunder clouds That are holding back their tears, They join like thoughts that bubble and build, darkening and swelling as they grow, Then lightening bolts of anger That flash across the sky, The thunder loud and fearful, and then there comes the rain, At first it's soft and gentle, and then pours out it's pain. Why, oh why, can I not cry? I love you so much, but yet, I know your in a better place, but still, I have regrets, Why did I not spend more time with you, while you were here with me? One day time may set me free, just like the passing storm, but for now, I'm in this place, and inside my heart-it's ALWAYS raining! All my love, Mom

Rebecca, I am so sorry for the loss of your precious Alexander. Please know we are all here for you when you need to talk. I lost my infant son, Noah, 28yrs ago to SIDS and though he wasn't stillborn, it was a very short time to have him. I know there are some groups that I've come across in my search for support that I will find and post for you. You are in my prayers.

Hi Lizbeth, My Mom died in 1996 and my Dad in 2000. It's really hard to believe that it's been that long ago. I remember when my Mom had been in and out of the hospital over the past few years of her life, sometimes looking like there was no hope and she would pull through. She had congestive heart failure from smoking and she was also an alcoholic. She would sometimes retain 20 to 30 lbs of fluid. The last time she was put on Hospice. I remember so well my older sisters getting after me for falling apart when I saw her in the hospital bed in her room. I would go see her in the evenings after work. Something just told me to take my days off in the middle of the week so I could go and help more with her. The last night I went to kiss her goodbye and she told me she had 3 wonderful daughters. I got a call the next morning that she was gone. I had issues with both of my parents but I had always hoped that my Dad would go first because he scared me. I still cry. Especially when I feel like screaming and she would just say "I wish there was something I could do". My Dad was a very cranky old man. He couldn't hear very good and he was difficult to be around for very long. He wouldn't go to the Dr until my older sisters made him go. They are 12 and 9 yrs older than me. My oldest sister was too much like him to help him and my other sister had to work. I had saved my vacation time because I knew one day my Dad would need me. He hated people coming into his house so, when he was put on Hospice, he would only tolerate the nurse and the doctor. He would say insulting things and they just ignored him. I remember telling my Pastor that I felt like Daniel in the lion's den. But I stayed with him for two weeks. Enough to get really close to him. He fought me all the way but I loved him anyway. I had serious issues with him as a teenager but all of that melted away the closer he got to death. When he died, I too felt like a middle aged orphan. I really was affected harder by his death than my Mom's. I think that happens when you are the primary caregiver. I miss him a lot. I think for many of us, it takes a few months for the reality to set in. My oldest son, Jon, died just over two months ago and I know it hasn't really hit me yet. I cry when I go to the cemetery but most of the time, I just think about him. I'm glad you came to grieve with us, but like everyone, I'm sorry for the reasons we are all here. Blessings. Kathy

Hi E. I hope it's ok that I abreviated your name. I went to The Compassionate Friends chat room one time(I don't do well with a chat room) and not even thinking about it, made my name there JonKoisMom, because I am his Mom but when I got in the chat room, everyone was calling me Jon and it really bothered me but I was so desperately trying to keep up that I didn't say anything. Though I could see your son's name is Corey, you still don't really know a person's name unless they disclose it. Anyway, I just wanted to let you know I'll be praying for you. Jon used to always call me too. I liked the idea of making a memorial for your son. I was looking online for a spray that the mortuary sells to care for headstones. Never found that, but I did see a Memorial rock. The last time Jon was over to my house was for his, another son, Jason, and my granddaughter's birthdays. All my other adult children live with me and my Jason and my other son, David had a vegetable garden growing. Huge squash, lots of leaves. So we made a little area behind the garden to sit and talk. Though the garden is dying off, from the Arizona heat, I'm really thinking about getting one of those rocks to place in our garden so we can all remember the last time he talked and laughed with us. After his choking incident, he lived for 5 more days but he wasn't there because he was brain-dead. I will pray that God will find you a special memory that you can build ideas around. It's times like these that we would just like to be able to hug each other and cry together.

Hi Boo, I went to the site. I've been to so many I don't remember names well. It doesn't look like any one has posted there for awhile but I did reach out to someone's post. Thanks for your help.

Hi Boo and Marty, You ladies Rock! I soooo appreciate both of you! Boo, I was excited to see that I could start reading the book online. I read a couple of the stories, which of course, reminded me of my Noah that we lost 28 yrs ago to SIDS and then I jumped ahead to read your friends story. How sad and tramatic that had to have been for her and her family. My husband found Noah in his cradle dead. We had been very busy the day before and he was a little fussy so when he went to sleep in his cradle, we decided to let him sleep there instead of taking him to our room. He had just gotten a clean bill of health the week before so it was totally shocking. God has always prepared me for tragedy though. I had never heard of SIDS until a couple of days before he died I saw a Quincy show on TV and it was about twins where one had died from SIDS, so at least I could understand some of the crazy things I did were common. Another story, I believe it was the first story, reminded me of when Jon was born. I had barely turned 17 and the Memorial Day weekend was coming up and I remember my family telling me "don't you dare have that baby this weekend" because they were going fishing. No one knew what was going to happen to Jon, just like the Doctor in that story telling that couple not to have her baby that weekend because of his golf date. I was in labor with him for 3 days and when we went to the hospital, I remember two pairs of hands having to go in and pull Jon out of me. He was blue. They frantically worked on him and two days later, they wheeled my bed to the nursery so I could see him. My family had gone fishing because I was determined not to ruin their weekend. When we were told that Jon was brain-dead and made the decision to let him go, there was no way I could leave him for more than the amount of time it took me to grab a shower in his bathroom at the hospital. I was running my fingers through his hair when he took his last breath. That meant so much to me. Marty, it's funny how we go full circle. Jon's obituary was on Legacy for a month and I went there almost everyday. I never even thought of a support group there but when I went, it seems that unfortunately, a lot of folks have lost adult children that use that forum. I also could relate to a young Mom who lost her baby. Thanks for all the research you ladies did for me. I do feel connected here now too so I'm sure I'll be coming here often too. Blessing to both of you. Oh, by the way Boo, grieving the inability to have children is not pale in comparison. My children have been my life and I couldn't imagine not having been able to have any of them! That is a BIG qualifier in my book!