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Comment by Lisa Jones on May 3, 2020 at 11:05am

I haven't been on the PPMD community for awhile, but I came back to read all the posts, messages, and blog posts I ever wrote. I lost my son 9 months ago. I have decided to write a book about him, so I am in the process of gathering as much as I can to help me remember things. Reading things I wrote about him makes me feel like he is alive again. I want to write a book that makes the reader feel like he is alive. I want to honor his memory.

I am finding things that wrote on discussion boards that I forgot all about and a difficult discussion I started about my son's questions about death.

But I am so thankful to be able to go back and read these things. I wish I still had access to the old message board to see things I wrote during the years after he was first diagnosed in November 2000.

Comment by vilma rodriguez on April 22, 2011 at 5:53pm

Hello dear friends:

I know for experience this page is not very popular among parents dealing with DMD and the last thing you want to loose is hope for a cure.But While we wait for a cure we need to encourage this wonderful kids to base their hope and faith in God because ultimately he will help us go thru it and if there's a cure praise Him and if they must depart from us praise Him to. My son's relationship with God Helped him tremendously in dealing with this condition and looking back to all we went thru together God was there every step of the way. I was angry at God and felt life was unfair but my son made me realize that Jesus is the answer. Try Him I did and can't wait to see my Ismael again in Heaven 

Comment by kimmy watters on December 24, 2010 at 4:32pm

 my name is kimmy watters i know friends   who sons have dmd. i would like to come    and offer my support in anway,  i be praying  for all you have merry christmas. god bless kimmy watters

Comment by Kimberly Foernsler on May 24, 2010 at 8:41am

Beautiful words Vilma!! I lost Kory in 2007. My 6 year old asks me if I want Kory to come back and even though it is hard to "no", I have to. I would love to have back with us but I know he is in a much better place. I don't want Adam to be confused. He sometimes gets upset and wants his big brother back at home. I have to talk him out of it by explaining how much fun Kory is having there and that Kory will remain in our hearts forever. No one can ever take Kory completely away. Our memories will live forever. We will get to see him again when we join him in Heaven.

Comment by vilma rodriguez on May 23, 2010 at 7:26pm

.I was blessed to have a son like Ismael who brought so much happiness and joy to our family and we know he is not lost forever we're just separated for a while but someday we will reunite again and that hope make me happy even thou I missed him dearly and at times I feel my heart breaking in many pieces my faith in Jesus Christ is helping me thru. My son taught me to love the Lord no matter what and to trust him no matter the cirscunstance. As a parent I can honestly say that God is the only one that can heal our hearts and help us turn this sorrow in a blessing to someone else. Please fell free to call me at 813 569-5388 if any of you need to talk to someone that can understand your pain.

Comment by Sharon Malone-Dugan on May 8, 2010 at 11:16pm

Danielle. I know there is nothing in this life we will not be able to handle after having lost our sons. It is horrendous oredeal that we must now live with and the lonliness is at times so unbearablew, I just want to curl up and die. My 2 other girls keep me going. Erich died Oct. 16, 2005 , this year marking the 5th year. It seems like yesterday. I can remeber everything I have been through since then, but if somene were to ask me what I did at work the other day, I would not be able to answer. it is like a fog has taken over my life that never lifts. It is like a deep gashing hole in my heart that keeps bleeding. I am not sure I beleive when people say it gets better with time, I think the only thing that gets even a slight bit better is that I am now able to hide my tears. I put them right below the surface where at any time during the day, they could burst through, but now I try my hardest not to allow that. People dont understand unless they have lost a child. Losing a husband, even a mom and dad is not the same. Your child is a part of who we are.They are the beath that we breathe and every step we take. And they are the best part of our lifes. I like you just want one more hug, to hear one more laugh and to hear his voice.

I am so sorry for your loss Danielle.

Comment by Danielle on April 28, 2010 at 8:54am

I feel similar to how you described. I found this site and was over joyed, but then I realised I fitted into the bereaved category and I just couldn't accept that very well. I find comfort in belonging but at the same time wish that I could be in the other groups talking about tips, holidays and things (I still do talk about those things) but it's not the same. I haven't been on here because of the fear of accepting that it has been 1 year and 6 months (1 year and 6 months!!!) part of me feels cross about time passing, I don't want Frankie to get further and further away.Every month is a month further from frankie. It will be his 21st birthday on June 3rd and to keep his memory alive I'll be diving with sharks! I imagine telling him and I wish I could see his face. (http://www.justgiving.com/Danielle-Johnson )

A huge chunk has been taken from my heart and I don't think I'll ever be the same. When people say that, I understand in theory but now actually going through it, i'm actually a different person. I feel I'm in a sleep walking day dream most of the time, just going through motions in life but not actually experiencing any of it, and waiting for something that never comes (for him to come back). I'm not a depressed person in general and to look at me everyone would say I'm energetic, motivated and strong. But inside I feel a weakness. I get upset much more easily and I don't think people realise that it's because I have a constant sadness in my heart. A piece of me is missing, a peice of my limbs has been chopped off, a piece of my heart has been cut out, a piece of my soul stolen, and a chunk of my personality and strength gone forever. I yearn for just one more hug....

Comment by Mary Sahagun on April 27, 2010 at 9:37pm

Vilma,
So saddened to hear of another loss. We lost our Kenny March 31, 2007. My heart breaks for you, I understand the pain and pray that you find peace in the days to come. You and your family are in my prayers.
Love, Mary

Comment by Robyn Hoffman on April 27, 2010 at 8:56pm

VilmaI
Iread in shock and feel your pain! We lost Curtis one year ago this April 18th. Trust in God and allow your heart time to grieve. This is such a fragile time- be good to yourself! My prayers are with you and your loved ones. Hugs, Robyn

Comment by vilma rodriguez on April 27, 2010 at 8:36pm

Our loving son Ismael went with the Lord on April 23rd,2010 I need support from people that can understand how I feel. He blessed our lives in so many ways. He was a caring loving person that loved the Lord above all, he never complained or was angry at God and when I ask why us he would say "God is good and he has a purpose in everything that he does and he made me this way so when people see me learn to appreciate what they have" He touched many lives with his positive attitude and bright smile.

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