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Comment by Carol Keskeny on March 4, 2015 at 10:01am

Oh my goodness, Kimberly.  I can not imagine your pain.  My son is also 28.  I know when he was trached 3 years ago and had no voice, I cried everyday for a year but I still have him.  I would be happy to give you my email address if you would like to communicate and just scream if you would want to do something like that.  My heart felt sympathies are headed your way.  With very deep love, Carol

Comment by Kimberly Lamon on March 4, 2015 at 9:49am

I lost my son Michael to DMD on Jan 19, 2015. I miss him so much I cared for him for 28 years and now I am a loss as to what to do now.

Comment by Mary Sahagun on January 8, 2011 at 3:11pm

It has been a long time since I've checked in here. How are you all doing? Me, I'm just living one day at a time. Hope all is well my friends.

Comment by vilma rodriguez on June 11, 2010 at 11:40pm

Sharon, when my son was alive I often prayed for his healing but I also ask God for strength. At the end I asked him to allow Ismael to eat,to have control of his neck,to allow us to be there when his time to go with Him came and that allow him to go easy and he granted me all that and he also gave us such peace that we were able to minister to others during his wake and his burial God was there every day with us but I was to caught up in the situation to realize it ,yes they suffer yes they went to young but they were blessings to came to help us become better people. We have to find the purpose of all these and try to get involved in activities that you can help others that will make you feel better since you demontrated you could sacrifice your entire life to your son don't keep it to yourself share it with others and I know you'll make your son proud.

Comment by Sharon Malone-Dugan on June 11, 2010 at 12:10pm

Vilma it sounds like your son is alot like mine. His faith was so strong, he actually wanted to be a priest but the catholic church would not allowbit becasue of his disability. There was much anger on my part there. It is difficult for me to find forgiveness in God, as much as I know that Erich was prepared and had such a faith and knowledge that heaven was so much better than earth. BUt as a mom it is so heartwrenchng to not have my son with me physically. It is so funny you say that about the movies,as after Erich died there was so many he had wanted to see that were coming out. I went and saw each one of them. One of them was the disney film 8 Below and it was so strange, as I was walking out of the movie , I turned to the right and asked Erich how he liked it. He was there,I felt him, it was so strange. BUt there are so many thing he will miss; our sons were not ready to die,they had so much to live for and do yet. I am tying to find forgiveness and love for God, but it is so hard for me,evenstill.

Comment by vilma rodriguez on June 11, 2010 at 11:10am

Sharon we are ovecomers and I know from experience that thru all the years we spend with our boys that there's a bond that can never be broken and that we will see them one day. Trusting in the Lord sometimes is not easy believe me I was very rebelious at one point but my son made me realize that God is Good in everything he does and that I did not knew God the same way he did and he said it with such authority that he amazed me. After many years of feeling angry and sad because he was unable to do many things normal boys his age could do and even after he passed away I told my daughter that now he was not going to be able the see the new movies, she turn around and told me"Mom he is in heaven he do not need not of that he is being loved with a perfect love, God's love and he is just waiting for us. God is real is not a fantasy to avoid grief He is real and He will give us confort believe me I know.

Comment by Sharon Malone-Dugan on June 10, 2010 at 4:08pm

My thoughts are with you. It is a horrendous process we asparents must endure and it is something no parent should go through. We do not think we can do it as it becomes too hard to handle, yet almost 5 years later I am still surviving. We do it for our sons, as you said for their legacy.

Comment by vilma rodriguez on June 9, 2010 at 12:16pm

It's being only 7 weeks that my son Ismael went to heaven with Jesus and I can honestly say it's being very tough specially the missing part and the realization that he is not coming back and to know that my grandson is also affected with DMD but as my pastor preached on Sunday about Hebrew Chapter 12 I realized how much God loves us that gave us his only son so we can have eternal life and that Jesus sufferred separation from his Father in heaven when he carried all the sins that you could imagine to the cross and to know that my son is under his care gave me peace in my heart. I am not a fanatic and I completely understand the emptiness we all feel but there is a purpose on this and we just need to ask the Lord for direction I want my son legacy of love,patience,tolerance,gratefullness and infinite love for God be an example to others that need encouragement during difficult situations. Think of our kids, they did not wanted us to suffer and that's why they battled this condition let's emulate them fight back those feelings and make the best of it that will ease some of our pain. Ismael will always be with me and his testimony will help me. live in this world but keep your eyes in heaven seek the Lord he is the only way.

Comment by Sharon Malone-Dugan on January 16, 2010 at 8:38pm

Memories ... thank goodness for them But it never does get easier. There is always an emptiness in the family and the holidays make it so much more evident. I always wonder how God expects us to live through this emptiness.

Comment by Mary Sahagun on January 2, 2010 at 7:26pm

Missing my boy...these holidays are so hard to get thru. Love memories and am thankful for them, but it doesn't get any easier. There is a hole that can't be mended.

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