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Comment by Kimberly Foernsler on December 23, 2009 at 8:14am

It still amazes me to hear how much alike all of our boys were!! Kory always worried about leaving me and how I would handle it. I told him I would miss him so much but would do my best to be a good role model to my other 2 children. I think Kory would have been so proud of me. I can't say that Kory suffered very long once he went into respiratory failure it was so quick but I know even though he never complained that he hurt everyday for at least 10 years. I'm so proud that I had the honor of being his mother!! He continue to guides me through my life. I always feel like he is with me. I'll never get over it!! Some people make you feel crazy for being upset over losing your child 2 years ago but those people have never experienced what we have so that can never & I hope they never have to lose someone that they love this much. My youngest was 3 when he lost his brother and he is now almost 6 and still talks about Kory and asks so many questions. I'm just glad that Adam was old enough to remember his brother and that he keeps those memories alive.

Comment by Eunice Rivera on December 23, 2009 at 4:39am

Tanya, never apologize for your feelings. You have lost your son and no one can tell you what or how you are suppose to feel. My son passed away on 2-20-07, we're going on three years. The stupidest thing anyone said to me after he died was, "well you knew he was going to die, he actually lived longer than what they had told you." I just wanted to hit somebody. My husband and I joined a grief class at our church and they helped me to be able to forgive well meaning people. Tonight I sat in front of my computer and watched my son's power point from his memorial service and basically cried through the whole thing. Crying is good, I feel better after I've had a good one but I can only do that when I'm alone. I miss Michael so much but when I think about the quality of his life towards the end he wouldn't have wanted to live that way. My son suffered more from 11-14-06 through 2-18-07 than he did his whole life. He had 10 percent function of his heart and because of that his blood pressure would bottom out. He had cardiomyopathy and the prognosis was not good. He had never been sick or in the hospital, I was in shock. He coded on 2-18-07 and ended up on life support for 2 days. The doctors wanted us to give them more time to run more tests. He was put on a ventilator and had a feeding tube. The nurses kept coming in and drawing blood and taking Xrays, etc... and I did not see him responding. If he had survived he would be placed in a 24 hour care facility and would never be taken off the ventilator. I know my son would not have wanted to live under those circumstances. Michael is my hero and he worried about me more than himself. He asked me a few times, "are you going to be OK?" and I told him I would be. I now have 3 grandsons and I finally got my first granddaughter and I plan on telling them all about their uncle Michael. He was so brave, he never felt sorry for himself and he was such a good person. I believe God gave Michael to me because he knew I was the right person to be his mother. I was the only one that could take care of his special needs and the only one to take this challenging journey with him. We came to the end of the journey and God needed him back. His purpose for being here was complete and I know he is so happy in his new body. He can finally do everything he couldn't do while in this world. He is probably tall and he is a fast runner. I have some bad days but I need to live my life to its fullest in memory of my son Michael. I would want him to be proud of me and I think it would make him sad to know I had given up on life. I now have a new role as a grandmother and my grandchildren need to know how much their uncle Mikey loved them and how he tried so hard to get better but it wasn't to be. God had other plans. My faith in God is what keeps me going. I think about all those Christmas' we shopped endlessly looking for whatever Michael wanted until we'd find it. I have many good memories with Michael and concentrate on them and not on the DMD. I feel lost sometimes because I kept busy taking care of Michael and he doesn't need me anymore. My heart is broken into a million pieces but the Lord is slowing putting it back together one piece at a time, so it will probably take the rest of my life if it's ever whole again. I will be praying for all of you.

Comment by Gisel Rivero on December 22, 2009 at 8:24pm

Tanya, plz don't be sorry for venting that was why this group was created. I wanted us that have lost to have a place where we could just say whats on our mind because its hard for others to understand or even try to imagine how we feel. Just like Sharon I've been told that I need to find my new normal, Im not sure what that is but I hope to figure it out someday or at least be able to get somewhere close. Although I don't have as many memories of Dylan like you have of Christopher I do feel numb from time to time. Like Im just going through the motions. I had to x-mass shop this week for my son and my cousins and the whole time we were in the toy section I just wanted to scream..see im venting too..

Comment by Sharon Malone-Dugan on December 22, 2009 at 11:36am

Tanya, I don't think we will ever feel normal again. We as moms develop even a stronger bond with our sons as they relied onus so much and we knew everything about them. After Erich died, I really didnt know who I was. I was Erich's mom and that was my life...and I like you also have other children, but we are never the same again, nor isthe family. It is so hard to beleive we are family when one person is gone, it never seems right. Someone told me that I had to find a new normal and remake the family and that is so hard to do. tanya I am not sureif the numbness goes away. I wish I could say after 4 years it des, but it seems as fresh as ever. The holidays are so difficult to pretend to be happy for my girls yet my heart breaks for Erich. I hope that you find the strength to enjoy the holidays with your family.

Comment by Tanya Fleming on December 22, 2009 at 3:45am

December 10th was 2 years my Christopher died. I am still so numb from not having him here with me, even though I have the others to keep me so busy. I hate not having him around. He was my strength, more than I reliezed, I could talk to him about anything, and he could talk to me about anything too. The times I miss the most was when I would just sit in his room and hold his hand and rub it while watching a movie. I thought I would start feeling more normal again, now I don't think I will ever be myself again, not whole anyway. I think it is terrible for any other parent to experience this. Everybody use to tell me I was so positve and outgoing, how come I don't feel it anymore. Sorry for venting, but I had to do it. Thanks for reading....

Comment by Sharon Malone-Dugan on November 17, 2009 at 2:26pm

I am also glad to see that there are not many members on this site. My son Erich died in October 2005 at the age of 24. I alwasy thought we would at least get to 30, but I fell short of that. He died in his sleep one night. It is something we as parents are never prepared for and should never have to experience. For those of you who have your sons keep working and praying for a treatment to stop it or a cure to take it away...I know either would be a blessing. Erich is our hero and angel in heaven.

Comment by Richard Kelly Poole on February 3, 2009 at 9:03am

Well I'll go out on alimb and say I pray we don't get too many members because that will be good news from the md research/cure areas.I lost my son Tyler and do not plan on seeing my son Spencer get his wings before his time.The thing that keeps us going is that he gives us incredible "signs" quite often and also the knowledge that with each day that goes by we are one day closer to being together again.

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