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Bereaved Parents

For those who have lost a child.

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Latest Activity: May 3, 2020

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Comment by Tanya Fleming on January 12, 2009 at 9:42pm
Wow Barb you have been through it. I lost my oldest son in Dec 2007 to DMD. So I totally agree with you on the Decembers being horrible for a long time. I am so sorrry for your loss. I know the first couple of months I just slept most of the time. I watched movies of him, looked at pictures and even wrote a journal to him as if he would be reading it. I wrote to him when it was a couple of weeks, months and even on Dec 10 2008 which was a year since he passed.

I noticed you lost a daughter too, what happened if you don't mind me asking.

I am here to talk anytime you need it.
Comment by Barb Aleman on January 12, 2009 at 8:58pm
Hi! I'm new here. I'm so glad to have been told of this group. It's exactly what I've been looking for. My son Trevor who had DMD died on Dec. 15, 2008, exactly 4 weeks ago today. Everything has been very difficult since Trevor's death. I'm on my own so the house is very empty-despite my 3 4 legged companions.

I've longed for someone to talk to who has also lost a child with DMD.

He went from us thinking maybe his wheelchair wasn't fitting right on Tuesday, to, going to the ER and ending up on a ventilator on Wed., to Thursday doing ok on bipap and being told we'd take him home on bipap at night, to Friday almost losing him when he needed to be reintubated and being told there was no hope of him ever breathing on his own again. On Monday he went to a hospice where he died less than an hour after the tube/ventilator was removed.

Like Ana's Jeffrey Trevor was severely delayed cognitively and appeared to have autism although he didn't. He said only a few words but was the happiest kid I'd ever met. He hadn't cried in months until he was put on the ventilator. He hated it with a passion. I knew that even if it cost him his life there was no way he could tolerate a tracheostomy and being on a ventilator. I'm so glad we had the 5 extra days after he first went on the vent to sort of get ready and to say goodbye and we were able to have him at the hospice where he'd gone for respite throughout his life at the end. He loved it there. And, I was with him every minute after the ventilator was removed and had my arms around him when he died.

It's been hard because he seemed to be so healthy. He got through his spinal surgery in 2007 and had done so well. I knew it was unusual that he was almost 17 and not having respiratory problems. I just thought he'd go through a series of illnesses. I never dreamed that his first illness would also be his last.

My daughter's birthday is at the beginning of Dec. and even though it has been over 8 years since she died, I really felt it this year. Now to have lost Trevor in December as well I think Christmas and Decembers are going to be horrible for a long time.

I've started a memorial site for Trevor. It's at: http://trevor-vieira.memory-of.com/About.aspx

I've also started a blog to help as I go through this grief: http://angelbearmom-barb.blogspot.com/

Again, I'm glad to have found this group.
Comment by Gisel Rivero on January 6, 2009 at 11:42pm
Hi Ana,
Yes Mary is great! She's also helped me with the loss of my Dylan as well as the other great people on this site. We are here all for each other and it's a process learning how to live without our angels, and don't beat yourself up because there is NOTHING easy to understand about DMD. Dylan wasn't diagnosed until after he had passed and only by chance because we okayed that last blood sample. All we knew for my sons last month of life was that we were going to lose him and there was nothing we could do about it, because whatever neuromuscular disorder he had was very severe and he couldn't breath on his own. When we were finally told a month after Dylan passed that it was DMD we didn't know what it was and we were also told that it was not common for a newborn baby to show such severe signs. His physical therapist was shocked to find out it was DMD. What am trying to say is slowly begin to understand DMD but please don't be too hard on yourself.
XOXO
Gisel
Comment by Ana on January 6, 2009 at 2:59pm
Hi Everyone

I just joined today. I have longed for a site like this for a long time. I thank God every day for finding Mary for me. Through Mary I found this website. And with Mary's help I have found a small comfort in Jeffrey's passing. Thank you Mary for everything and the last year that you have helped me cope with Jeffrey's passing.

Jeffrey had autism as well as DMD. Through Mary and Kenny I am slowly understanding DMD and what it must have been like for Jeffrey. There is still so much I do not understand about life and death. But with the help of all my new friends I think I will find the answers I so desperatly seek.

I lost my dear Jeffrey on 12th November, 2007. He was 16 years old. I miss my gentle giant every single day. My day is not complete unless I stop by and pay him a visit in the cemetery. I am forever tormented by Jeffrey's last moments on earth. I wish I was more in tune with what was happening. I wish I could have held my Jeffrey as he took his last breath. As it was I was in serious denial. I would not let myself believe that the end was here. The dreaded day. I will always regret that the last thing Jeff took from me was my fighting with him to stay calm and listed to the doctors who were frantically working on Jeffrey inside the ambulance. I turned to get down and when I looked Jeff was gone. I will be tormented forever by the look in his eyes. I wish I was more aware because I would have liked to hold my precious son in my arms and kiss him one last time and tell him how much I loved him.

Alas that did not happen. I live every day with the memory of the last moments.

Thank you for sharing your sons and experience and thank you for allowing me to join your discussion/group.
God bless
Comment by Richard Kelly Poole on December 26, 2008 at 11:22am
thankyou Kim and Gisel,w/ every day that goes by we are one day closer to being w/ them again and finding out the answers to our many questions.rich
Comment by Gisel Rivero on December 24, 2008 at 10:34pm
Richard & Nicloe,
I also lost my son Dylan to DMD 6/29/08 and I know it's hard because sometimes am not sure how I make it through the day but you need to stay strong. I know it's easier said than done. I just don't know what else to say just that here I am when ever you need someone to listen. I miss Dylan every minute of the day.
Keeping you in my prayers
Gisel
Comment by Kimberly Foernsler on December 24, 2008 at 9:29am
Richard & Nicole:

I lost my son on 08-31-07 to DMD. He was 16. I know exactly how you feel. Kory's favorite holiday was Thanksgiving so it's really my hardest. Then of course the dreaded Xmas holidays. Kory's B-day is in March so March is horrible and then there's always the dreaded date of his death!! I just try to get through one day at time and think of my Angel Kory almost every minute of everyday. He's still my strength!!

Sending prayers your way!!
Kim
Comment by Richard Kelly Poole on December 24, 2008 at 9:22am
Nicole and I lost our angel Tyler(7-1/2)on 6-26-06 Dec.is a tough month w/x-mas and his birthday.Love and prayers to all,Rich
Comment by Tanya Fleming on December 10, 2008 at 5:11pm
Thank everyone for your words and prayers of comfort. That is exactly what I told the kids we can only talk about the funny things he did. So Mary that is what we are doing only sharing good memories today.
Thank you all again
Tanya
Comment by Gisel Rivero on December 10, 2008 at 4:57pm
Tanya, I will have you in my payers today and always. I lost Dylan 5 months ago and somtimes I can't believe it's been that long ,other times it feels like he has been gone for a long time. There are no words that can describe what wefeel. All I know is that it's okay to feel to cry, when we feel like crying, to laugh when we are remined of something that brought joy to our sons and basically take a day at a time. I don't know what esle to say but I know I needed to say something.
xoxo
Gisel
 

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