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Bereaved Parents

For those who have lost a child.

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Comment by Tanya Fleming on January 13, 2009 at 5:18pm
Kim your words are very powerful but true, we are hardest on ourselves. I remember once in the hospital with Chris I forgot something really stupid and call myself a bad mom and the RT and Dr. both looked at me and said at the same time they never wanted to hear that again, because I was the best mom they had ever known. So you are right the boys are proud of us and love us for taking such good care of them, they knew we would have to make tuff decisions, but counted on us to do just that. Don't second guess or expect forgivness, you didn't do anything wrong.
Kept your chin up you are a super person and mom.
Tanya
Comment by Ana on January 13, 2009 at 4:07pm
Kim - I love this story. Beautiful!
Comment by Kimberly Foernsler on January 13, 2009 at 3:18pm
Dearest Ana:

Jeffrey has nothing to forgive you for. You did a great job taking care of him and he knows it now more than he ever did while he was here!! Don’t ask for him to forgive you because he doesn’t understand what he needs to forgive you for. Just tell him you love him.
Don’t be afraid to go to the places that you went with Chris. Drive past the hospital because it just might be that he is standing there somewhere waiting on you to pass.
Adam had surgery shortly after Kory passed away at the same hospital Kory was in when he passed away. It was hard on me but Adam ended up having one of Kory’s nurse’s that was with us the day Kory went in to respiratory failure and the anesthesiologist was a sister to a friend of mine. She was also Kory’s anesthesiologist a couple times during the years. They both knew Kory and what had happened. They made it a point to assure me that Adam would be fine and took extra special care of Adam.
Our sons aren’t mad at us because they went on to live in a beautiful place. Some of us are scared to take that journey. Kory was scared but he was more scared about how would handle his death. They are so proud of us that we made it though the toughest days of our lives. We are stronger for what we’ve endured!! Dylan, Kenny, Jeffrey, Trevor, Chris, Tyler & Kory are having the best time together and are smiling down on us. One of Kory’s doctors told me one time that I would always second guess my decisions. He said, “just go with what you think is best.” I choose the steroid free life. Was I wrong for that? I choose not to get the tracheotomy. Was I wrong for that? It’s hard because sometimes I want to change my mind but it’s too late. Deep down, I know I did things exactly how Kory would have wanted me to do it. I’m a firm believer in the quality of life not the quantity. I’m sure you lived life to the fullest when Jeffrey was here and they want us to live our life to the fullest now. Like I said, I know it’s hard and believe me there are days when I just don’t want to go on here anymore. I want to be with Kory but then there’s my husband and other 2 children. They want me here. When my time comes, I’m ready to see Kory again. Until then, I do the best I can as a wife, mother, daughter, sister & friend.

Love,
Kim
Comment by Kimberly Foernsler on January 13, 2009 at 2:31pm
Kory died on August 31st. We buried him on September 2nd. The MDA telethon was on Monday, September 3rd. Late that Monday afternoon my daughter, my husband, Adam & I were all watching part of the telethon that I had taped. It was really hard to watch and they kept talking about Kory being at summer camp and losing his fight with DMD. It was really hard to watch it. Howie & my daughter were talking about something totally different and all of the sudden the doorbell rang. We had installed a doorbell that hung from the ceiling via a string over Kory’s bed. That way if he needed us during the night (he had a very soft voice) he could ring the bell to wake us. Howie & Kellie kept on talking and I said “Kory’s here!!" They looked at me and said “That was the doorbell.” We all jumped up and ran to Kory’s room. I flipped on the light switch and said “Hey baby, I love you” and the light blinked 3 times as if Kory said, “I love you”. It was totally amazing!! We all cried and the light never flickered again that day. The doorbell didn’t ring anymore the rest of the day. I know it was Kory. He just wanted me to know that he was safe now. We’ve had several other occasions since then where Kory visited for a few minutes. I ask him all the time to come back and say hey every now and then; but it’s always unexpected. If I ask him to come he doesn’t. I sometimes think, what if he came while I was at the store but I can’t wait for those times. Sometimes the signs are so subtle that you may miss them. One night my husband & went out to eat. This was shortly after my Kory passed away. I remember I was so upset because it was the first time that we went out after Kory died. It seemed so hard that we going out without Kory. Most of the time I don’t even notice the server’s name that is waiting on us. I was waited on by a young lady named Kory. She even spelled it the same way. Of all the restaurants around to go to, we picked that one & of all the servers in that restaurant we got Kory. Why? Just maybe it was Kory saying I’m still with you & have a good time!!
We still have the doorbell put on shelf in the extra bedroom and it will occasionally ring even though it has no batteries. We had to replace the ceiling fan in Kory’s old room because it got to where the light wouldn’t even cut on anymore. It’s kind of strange that it never gave us a problem until Kory was gone. The fan sits in the basement floor. I don’t have the courage to throw it away yet.
Comment by Ana on January 13, 2009 at 10:42am
Oh my God Tanya! I did not realize Chris went through that when he passed. I am so sorry my friend. Watching a child die has got to be the hardest thing in the world for a mother. All of us here loved our boys unconditionally. We all made decisions we thought best (I am one mother who is still beating myself up about decisions). I have to remind myself every single day that I Jeffrey would forgive me because he was a sweet loving boy. I have to come to terms that on 12th November 2007 was Jeffrey's time. I will live forever with the image of the pain in his eyes and knowing he craved comfort makes me sad. As I read of your boys dying in your arms peacefully it makes me even sadder for Jeffrey. He had such a difficult life and deserved to die peacefully in my arms. Not strapped to a bed in the ambulance. It was horrible. I cringe each time I hear an ambulance. I still cannot drive past the hospital. I take back roads to avoid it.

At the end of the day I know - as you all do - that no matter what we would have decided sooner or later DMD would have taken our boys. Barb - the trach may have bought Trevor some time - but how much of that time would have been quality time? He would have been miserable.

How wonderful for all of you who were blessed to hold your sons and give them peace as the life slowly left their bodies. What a beautiful peaceful way to go. Tanya Chris is free now from all the pain and suffering. He is now in heaven looking down on you and the family with love. We all have a direct road to God via our boys. My deep prayer is that I receive some sort of sign from Jeffrey that he forgives me and is happy. Until I get that I will never rest.

Mary you gave me a little light when you told me about being in Church and seeing Kenny dressed in white. I have to remind myself that Jeffrey worked with Kenny through you to give me some sort of peace. You really need to share with us all - especially for Barb as I see she is hurt the same way I was - Kenny's last days & moments before he passed. Like Barb - Trevor & Jeffrey could not communicate with us. It is difficult for us to understand whether we made the right decisions. I found some comfort from your email that you shared about Kenny's last days. I know Barb would feel the same comfort and you answered many of our unanswered questions.

I am so glad Barb joined this group. She is a wonderful loving devoted angel of a mother. She is blessed! Both Kayda and Trevor were so lucky to have found such a loving mother.

In closing you are all wonderful parents. You have so much to offer in this group. I would love to see us use this site as a journal. We could all learn from each other. I am amazed at how many of us turned to journals to help us deal with the loss of our sons. We could do the same here! This is a wonderful site for us to journey TOGETHER down the lonley road of grieving.

I love you all and am so glad we've all come thogether. Unfortunately it's been at the expense of loosing our children. Would it not be wonderful if we could all get together and talk? Wish we all lived closer as I feel so alone here in Bermuda. A small island in the middle of nowhere!

hugs to all of you
Ana
Comment by Kimberly Foernsler on January 13, 2009 at 8:32am
Barb:

I took the same journey with Kory. Kory went in to get a feeding tube and we thought everything was fine. The next thing I know Kory is in respiratory failure. He never made it to surgery to even get the feeding tube. They put Kory on a respirator through the night and I slept in his room back behind him. He was in PICU. The next morning they ran us out of the room since visiting hours were up. About 20 minutes later they called us back into the room because they had removed the tube. Kory was awake and trying his best to talk but his neck was so swollen. I told him to rest and that I would see him in a few minutes when visiting hours started back. I kissed him and said, “I love you”. He replied back with “I love you too”. I went back to our room in the hospital to finish getting myself ready. About 20 minutes later I got an urgent call to return to Kory’s room. Kory had slipped back into a coma and was back in respiratory failure. He blood gases were climbing. Right then the doctor said we had to decide if we wanted to do a tracheotomy. She gave me 1 hour to make the decision. I called my family and they rushed to be there with me. I made the difficult decision of turning off the vent. Kory passed away 1 hour later.
Kory had spinal fusion in 2004. He lived for 2 ½ years after this surgery. We were told that he’d be totally bedridden if we didn’t have the fusion. I’m glad he had that surgery but they said it was extremely difficult to put the breathing tube into Kory because of the fusion and Kory was so small. So, the spinal fusion does make it difficult in the end. Either way is a toss up!! It’s like we were constantly gambling!! Our only hope was to spend as much quality time with Kory as possible!! He will live forever in my heart!!

Praying for you!!
Kim
Comment by Gisel Rivero on January 13, 2009 at 12:07am
Barb my heart really goes out to you and yes you did the right thing you thought about what your son wanted, he hated that vent tube and right now he is in heaven with my Dylan glad that they no longer need those tubes. See Dylan was 3 1/2 months when he passed his DMD was so severe that it presented at birth (surpise!) and we never had any answers all we knew was that he wouldnt be able to breath on his own and he couldn't move and limbs just wiggle some of his fingers and toes,and all his brain fuctions were totally normal . Dylan had to be vented all the time and being a new born and all he didn't have a strong enough immune system to fight every single infection. The docs also told us he wouldnt make it to his first bithday. We knew we had to do what was right for Dylan not for us, we couldnt see him suffer threw another scare , infection we knew we had to let him go but how. On June 2 we took Dylans case to Ethics and Dylan passed away in my arms on June 29 he was still vented but he just couldn't do it anymore. I share this with you because I know what it took from you to do that for your son because we were ready to do it for Dylan.
In case your wondering why we didnt have to at the end he let go before we did. See once we knew that all hope was lost we really enjoyed him those last weeks,but had he gotten an infection I would have taken him off that vent in a heartbeat. I will have you in my prayers
xoxo
gisel
Comment by Tanya Fleming on January 12, 2009 at 11:24pm
You made the right decision Barb, I didn't have to turn my sons vent off, he had a trach for 7 years, it was the right decision for him, but I think if I had of known all the problems that the trach caused, (ya know hind sight is 20/20. Ya see Chris had a trach for 7 years, but his father wouldn't allow him to have back surgery to straighten his back and at 17 he was on his last leg overall breathing was 11%. His dad wanted to just let him go, but I talked to Chris and he wanted the trach, so that he could live longer, he knew he may never talk again, or be able to swallow food, well he prove everyone wrong and talked the day he had his trach. but with not have his surgery his neck was twisted, and with the rubbing of the trach inside his airway he wore it down and got an whole in his trachea airway and he didn't die of Respiratory failure or heart failure I watched my son bleed to death right before my eyes. So turning the vent off was a better way to go in my opinion.

Just my opinion after the fact. So each person has to make there own decision and understand that, that was the best you could do. And be happy that you did what he wanted, You said he hated the vent, so you did the right thing sweety. You are a great mom for everything you have gone through.
Tanya
Comment by Barb Aleman on January 12, 2009 at 11:12pm
Thanks for the welcome. One of the things I've really wanted to talk about with people who have been there is the decision to remove the vent. Mary, if you could tell me more about Kenny and what happened near the end I'd really appreciate it. The decision seemed clear when I made it and no one at all questionned it and I was reassured over and over by the drs that it was the right decision it still bothers me. I remember the respirologist saying that I wasn't to have any regrets or doubts about it afterwards and I replied that I knew I would. I know with Kayda she'd been slowly dying for several months and went to the hospice when she could no longer tolerate any liquids-she hadn't been able to tolerate much formula for awhile. I still questionned my actions with her even going as far as telling myself that if I hadn't picked her up that night she wouldn't have died-when in fact I know she told God she wasn't going any where with Him until I was holding her. I've known this before but am learning it all over again; when you're grieving there's not a lot that makes sense especially in your thinking.

For those who asked, Kayda had Hydranencephaly-she only had a brain stem. She lived 11 1/2 years though and was a delightful interactive child.
Comment by Mary Sahagun on January 12, 2009 at 9:43pm
Hi Barb,

Welcome,

When I read your posting on the DMD site it broke my heart to hear of your loss. I am so sorry. I hope you find some comfort here.

My heart goes out to you as I can relate to what you may be feeling.

It is shocking and hard when they look so good and act as if everything is OK. My son was also off the vent for exactly an hour before he passed. Kenny's passing was due to heart failure. Being able to talk freely on here about Kenny has really helped me get through some of the tougher days. I hope you find the same.

Big Hugs,
Mary

Mary
 

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