Thank you all for your support over the last few days. It's been a rough few days. Knowing that some day I'll get the chance to see his sweet face again helps.
I had a friend tell me yesterday that she was surprised at how well I've done. She said she didn't think she could of done it and that I was a very strong. I had to explain to her that I wasn't as strong as I seemed. I told her that my grief was really shown the day Kory was diagnosed. After I got through that; I turned my life around to live everyday to the fullest where Kory was concerned. We laughed, we smiled, we cried, we ate junk food (Kory loved his Kit Kat's), we went to movies, we went to Florida, we went camping, and we enjoyed what time we had together. I have no regrets when it comes to the care and love that I gave Kory. I certainly have no regrets as to what Kory taught me. He was wise beyond his years. He was intellegent, sweet, handsome, caring and loving. He never once lost hope. He held his head high. He never got angry about the things he couldn't do. I told her that I feel sorry for those of my friends that lost a child suddenly to a tragic accidents. I had 10 years of knowing that one day Kory would be taken from me. While I never really prepared myself for that day. I think I've grieved for 10 years in my private moments. My grieving still isn't over by any means nor will it ever be. I'm just more willing to show my feelings now. I kept it a secret from Kory. I let him dream of all of the tomorrows because that's the way it should be. He would tell me that he was going to build a huge mansion. He would live in the center and I would live in one of the wings. Kellie would live in the other. That way we'd all always be next door to each other. He told me that he would have a bigger TV than mine. That was always a joke between Kory & I because our den had the biggest TV and he wanted it in his room. I'm sure he has no need for that huge TV in heaven. He's much too busy to stop to watch TV. He's jumping, running, riding and having a wonderful time.
I couldn't watch the telethon very much yesterday. I watched the local part where they showed the pictures of all of those who have lost their battle. It was really sad to see another one of the boys that Kory knew had lost his battle this year. He was 23.
I've added a video of Kory to my page. I messed it up a little but hopefully I'll get it past you guys and you want even notice. It's amazing how much Kory changed through out the years. The guy towards the end of the video is Aaron. Aaron was Kory's MDA camp counselor for 2 years. Kory adored him. There's one picture that has all 3 of my babies (Kellie, Kory & Adam). I think there's another one that has Howie in the background. Howie is Kory's step dad but he loves Kory as much as we all do. He took great care of Kory for 8 years.
My heart goes out to you and your lovely family, may you know and find the Peace of God and that He will comfort you during this time, it is a long journey you have been through and He has brought us all together to be able to share and find comfort in one another. Blessing and peace be with you. May your hearts be filled with joy knowing that your son is with our Father in Heaven. Hugs to all of you, Jo-Anne
Hey Kim, From Jackson TN to you.... I am thinking about you this weekend! Don't you fret it, you have a TON of prayers headed your way...it will be OK! I read your entire story, very very touching. But I want you to know that you can open up and tell us all that you need to tell us. We are here for you and want to help you any way we can, listening and praying for you all the time!
Kimberly - once again your story brought tears. Kory was a special young man. Yes Kimberly - Jeffrey loved to sit in the garden and watch the butterflies flutter by. On the 4 month anniv of his passing I was walking past a Jewellery store and saw the most beautiful butterfly in white & yellow gold with diamonds & sapphire. I bought it on the spot. It spoke to me of Jeffrey. My heart breaks each time I see a butterfly. My 5 year old - Gabriella - looks at butterflies and says that Jeffrey has come down from heaven to play with her. We have milkweed in the garden and we watch the caterpillars every day and we watch the cocoons. It is magical to see the butterfly.
I always said that DMD boys were like butterflies. They come to earth without their beautiful wings. They bless us with their beauty and grace. The butterfly lives for approx 2 weeks - in the short life span the butterflies gives us pleasure. Much like our boys. Then they are gone - much too soon - like our precious boys. So monarch butterflies to me symbolize our boys. Their beauty and grace. Jeffrey had autism as well and he was most at peace in the garden watching the birds sing, the butterflies flutter by and the wind lightly caressing the trees. That was my precious angel. My God - I can't tell you how much I miss my angel. How much of a whole he has left in my life. I know that all of us who have lost our boys feel the same way.
Kim - I can imagine how you feel with the 1 yr anniv of Kory's passing fast approaching. I bet it feels like yesterday. Jeffrey has been gone for 9 months and it seems unreal. I often thing that if I wish hard I will find Jeffrey in his bed watching tv or playing with his special toys. I still visit his grave every day rain blow or shine. It's very sad exhistance. But I still can't leave my Jeff......
Thank you very much. Tell me more about Kory, he looks like he was on the small side of DMD. My son Christopher was too. When did Kory die. Tell me some of the funny things he did, I find alot of these boys were stronger inside then anyone on the outside could be. My faith is helping me to cope most times. Knowing I will see him.
When you get down email me we can talk about anything you want to.
I think the thing that is the hardest for me is the sad feeling every morning. Everybody I talk to says that will go away, but I am wondering when.
Take care and email me anytime
Much care and concern
Did Jeffrey have a thing for butterflies? Adam and I were in the pool one day a few weeks ago and beautiful white butterfly had gotten in the pool, Adam got upset so I took the butterfly out and sat it on the deck. Adam said take him to the doctor. I had to explain to him that the butterfly was already in heaven and that we couldn't save him. He said "Kory has him now?" I said, "yes honey he's with Kory". He looked up at the sky and said "Kory you have fun with the pretty butterfly, he was my friend".
When Kory was little and we were dealing with DMD diagnois and I was upset (I never let Kory see me upset) I was driving home from church with Kory in the backseat. Kory said, "You know Mama I've been in heaven before." I said, "Really?" He said, "Yes, it was really pretty there but God saw you and said she really needs you so he took my wing off and sent me to you." Of course I cried silently. Kory came to me from heaven as angel and now he's an angel again. My exact words when I kissed Kory's forehead after he died were, "Baby now you have your wings back. Tell God Mama said thanks for sharing you with me."
Hi Kimberly - I just read the account of Kory's passing. OMG! My heart goes out to you and your family. It took me a while to read it because it was so touching and I was in tears. It took me back to the day I too lost my Jeffrey - 12th Nov 2007. I miss him every single day. I look for him everywhere. Especially when I see a butterfly. .........
Hi Kimberly - thank you for welcoming me. Mary has been a great source of comfort for me. She has unselfishly shared her Kenny with me. I would love to know Kory and would love the opportunity for us to share stories of our precious boys. I see that Mary you and I share a common bond. We all lost our boys at such a young age. May your Kory rest end enjoy himself with the angels with Kenny and Jeffrey. I pray the boys have somehow joined up and become helping whispers to all the other kids who live with DMD and may they comfort the hearts of the parents who watch their kids go through their challenges with DMD.
I am so so so sorry to hear about Kory's passing. What a beautiful boy you had, it breaks my heart to hear he is no longer with us. I hope we can all be here for you, to support you and to help you laugh again and to remember your son. It must be wondeful to have little Adam, to help remind you all of Kory through his innocent reminisces and tributes to him (ie the pillow). I am sure Kory is up there in heaven, looking down on Adam and will take over as his guardian angel.
Thanks for responding. I would love to see more pictures of Kory. The reason I asked about his deletion is it seems like the ones who pass away in their teens have deletions in the middle of the dystrophy gene around the 44 area and Jacob's deletions are 42 and 43 and I'm just so worried.
I can't even imagine what you went thru and are still going thru over losing Kory.
As a grandmother I hate watching my daughter go thru this and the thought of losing my only grandson and my soul mate just terrifies me.
Again, thank you for answering me and I hope that you don't think I was prying too much.
The one picture is of my younger son in Kory's lap. Is that the one you are talking about?
Honestly, I don't remember his deletions without contacting Vanderbilt to get the paperwork resent to me.
Kory was 16 when he passed away. He had lost a ton of weight. He was down to 58 lbs when he passed away. He actually went in the hospital to get a feeding tube. We thought everything was fine but Kory was extremely sleepy. They did his oxygen sats and they were extremely low. They immediately put him on oxygen but Kory seemed to fade into a deeper sleep. They thought we had accidentally overdosed him on some pain medication that he had just started taking 2 days prior because of fall from the wheelchair. They gave him something that removes the overdose but Kory seemed to fade even deeper into sleeping. Finally they checked his blood gases and sure enough it was off the charts. They had to put him on a vent. They had a hard time inserting the tube because of the spinal fusion. The next morning they removed the tube. Kory woke up and he tried to talk to me but his throat was so swollen that I couldn't understand him. He went back to sleep. He was in PICU so I couldn't stay back there. About 20 minutes later they called me back to his room and said that his blood gases were climbing again and they would have to do a trache. Kory was in a coma. They did not feel that Kory was strong enough to make it through the surgery so we decided to let Kory go to heaven.
I'll put some picture on the site later and you'll be able to see the bigger Kory. Honestly he changed so much over the years!! He weighed 130 lbs before the fusion and that was only 4 years before he passed away.
He was a beautiful young man!!! I miss him so much!!! I look at pictures everyday and talk to him!!
I just read your post about your son Kory and my heart goes out to you and your family. I hope I'm not prying but could I ask you what Korys' mutation was and how long he was on steroids? He looks so young in the first picture.