I am heading down to the Advocacy Conference this weekend and with your permission would like to add Kenny's picture along with your post about his passing to my handouts. I think I can take one of your pictures right off of this site.
I think that reading Kenny's last words and what he went thru has got to make an impact on these people and it will imbed Kenny and your family in their minds for ever.
I know that if I had never heard of Duchenne and read your post Kenny I would still wake up every morning thinkin of Kenny and you and your family. (There's something about his eyes that just draws me in:))
I just read your story of Kenny's passing and I had to write to tell you.
I feel that this is what is going to happen to Jacob too and for you to have been there with Kenny and gotten his messages when he passed has to be in a way a blessing. I believe that is why you posted it.
My heart just breaks for you and your family and I think about you every day.
God Bless You All
I wanted everyone to know that you all are in my prayers and am so sorry to hear of your love one's passing! I have taken the time to read all the discussions in your group and you all are wonderful parents.....I agree with Gisel that if people don't know what to say then they should say nothing at all, just put their hand on yours, give a hug, they mean well but, they upset others by coming off as rude and uncaring, unthoughtful and saying they understand when they haven't been thru what you have gone thru. The new friend I mentioned in my earlier reply, I can't talk to her when I need a shoulder as she ends up crying then I am comforting her, and she says she understands what I am feeling and she can't as she has 2 healthy children.....no clue at all.....but, we all do here on PPMD community forum....we all have the same clue on what is going on in our lives.......when I was on PPMD before awhile back, we didn't have our own profiles with pics etc......I went into other avenues and left PPMD for a bit.....something told me last week to check back in.....the changes are awesome and I am glad to be back!!!! So, many younger boys and their families on here, some just starting on the Duchenne Journey others already on their way!!!!
I will go to sleep here in abit remembering your son's smiling face I see while I am typing this reply! Such an angel he is!!!
Awesome young man and awesome family and friends he had while with you all! He was blessed by having so many loving family and friends around him and he blessed everyone else's life......my son Adam and I don't have this, but we do have each other ! He is my life and I support him on anything he wants to do in life, if I can help make it happen then I will, lots of times it is the cost of things that hamper it from happening.....like the gun adaption unit I was able to purchase for him to go hunting......$1,600.00 and he would like to have a adaptive fishing device to enable him to bring in his catch as he doesn't have the strength anymore to do it by himself costs about $600.00. A new friend of ours went to our local fish and game club and asked for help to raise funds to get him this device, no biters took the bait. She did this on her own after her family and mine went up in the woods fishing, kayaking, etc, for the day and they saw first hand his weakness they are learning more and more about what Duchenne means in a family and felt there had to be something out there to help him like the gun unit I purchased for him. Sad, because everyone knows Adam at the Fish and Game club as he is a member there and his grandfather was the president there for a few years. I will find a way to get this for him, he wants to keep fishing then he will continue to be able to fish.....I will make it happen someway.....I believe in him and will go that extra mile for him....because he is my son and he is my strength at times and he is my hero, just as I know your son was a hero to everyone who knew him! Just look at all the smiles Duchenne boys have everyday of their lives.....they all are an inspiration to us all!!!!
Adam's mom Cheryl
( Adam is 23 yrs. old now )
oh mary, life is so....I think of the same, we crossed paths for a reason. You were there for me too, i don't think you realized it. Fear...can consume a person and you can miss out on the here and now. You showed me fear has no place in our lives... life the here and now to the fullist and know what ever the future holds those who take time to care will help pull you threw. ok tears aside....I just booked the pavilion at the park for Josh's graduation party. wow.....
Up for a road trip, babys stirren get back to you real soon
oh josh said hi too!!!!!!
Yhea I know what you mean I've been really depressed lately and the holidays made it worst. Some people just shouldn't say anything if they don't know what to say. Am fine with people walking around and truning the other way at work. I guess its because it something so new and strange to me that I just cant handle comments like hey what are you doing for Christmas. I know I souldn't let it get to me but I do. I thought alot about you and your family during the holidays am glad to hear that your doing well.
Hi Mary, I got your lovely email last night. It ALWAYS warms my heart to hear from you. I read your emails and say 'that's exactly how I feel'. We both miss our darling boys so much.
Mary - Kenny's anniv is coming up soon. I was thinking about that last night as I was reading your email. This will be his 3rd anniv? The years fly by so fast I could not remember if it was 2nd or 3rd.
I will email you later on tonight. Gabriella had a beautiful dream the other night that I would like to share. It might bring back some memory of Kenny for you to share with me. All we have now is memories to share of our boys.
God how I miss my Jeff. Every day is harder than the last.
Hi Mary, hope everyone had great turkey day!!!! I talked to Lesa and I am adding pictures of Helen!! She is so beautiul, my favorite is Helen as a little one in her pink hat... so adorable!!! Helen is keeping my bubba goin...strong!!! Tears of joy, I wanted to share them you. Type ya soon.
Hi Mary...yes, he is a young man now! We went to the Idol Gives Back concert in May, so that's why we were all dressed up. We follow Idol and he loves Miley Cyrus (who performed). It was so much fun! Here's a big hug xoxo! Love, Lisa
Its me, finally!!! Now I just need to figure out how to work this site. I got on the old site yesturday, OMG, I need to get ahold of someone it was a smutty site on there. That does not look good for our cause. Miss talking so much, the babys is doing great he just got 2 teethies! Josh is well, Josh is looking into colleges!!! I am so excited for him I just cant cut the cord lol. Alicia started middle school-boys-help!!!! Daniel is well a typical boy no fear! How is your beautiful daughter doing? How are you doing? Josh is home today, there was a 2hr delay from snow, so hes playing hooky. I will get back to you soon, miss ya!
Thank you so much your message really brought comfort to me. I also can't seem to change Dylans room. Maybe I will someday, I just worry that I might harm my 3 year old by having Dylans room set up. Well we never built the crib it's in the closet, because in the Cuban culture we dont built the crib until the baby is home it's suppose to be badluck or at least thats what my mom, and grandmother say, Ha! I have recently met really nice girls at school some a little younger than I and they seem to be a good outlet. They always seem to be open to talk about Dyaln, most of the time they wonder how I do it. Get up take care of my 3 year old , my husband, my home, and school. I always have the same response Because Dylan would have wanted me to. All because our babies are not here physically it doesn't mean that we stop doing things for them. How are you doing?
Kenny was such a handsome young boy. Today my Dylan would have been 8 months old and I miss him so much and its so hard my younger sister whom I am really close to she can't even mention his name it's if she thinks that if we don't talk about him like I forget or something. The same goes with my mom whom am not that close to. Don't they get that am never going to get over the loss of my Dylan and being in denial about it doesn't help me any. My husband tells me that maybe thats their way with dealing with the loss,so I guess I have to give them time. Today I began to peel off some of the wall stickers in his room since his room is still set up, and it was hard although Dylan never came home this was suppose to be his room.
Well you know my luck. Howie was in he hospital week before last and he's having surgery next Monday. I had to listen to all the manly whining!! LOL. He has a hernia that is being repaired.
I got an all clear for the thyroid except I definately have Graves. I'm going to have to wait until next year to have it removed. I've got to get the side effects under control before he can operate.
I bought my Halloween decorations for Kory's grave this past weekend. I'm going out to the cemetery on Friday to do my decorating. Of course, my little helper Adam will assist me. He is definately my sunshine these days. He keeps me laughing. He calls Howie an "Air Head" all the time. He calls me "Super Mama". He still has that thing for Spiderman. Last week, we had several garden snakes in the picnic area at work. I made up a story for Adam and told him about it when I got home. I said, "I was sitting at the table and I looked down and there were snakes all around me." His eyes got big and he said, "What did you do?" I thought for a second and said, "I yelled Spiderman, HELP ME!! He had this totally WOW look on his face. Then I told him Spiderman came down from the sky and scooped me up and put me safely on the sidewalk. He looked totally amazed for about 2 seconds. Then he had this look of WHATEVER!! I told him to tell Kellie about what happened to me with the snakes and he said in a very dissatified voice "Spiderman saved her". It was so funny!!
Sorry for not responding sooner--I haven't been on here much and evidently never saw your post=) I certainly didn't expect you to respond--just wanted you to know that your family is thought of often! I'm sure that I am not the only one who thinks about all that your beautiful family endures. Thank you anyway for responding and for the compliments on my family.
Hope you all have a lovely weekend in sunny CA! Take care!