LOL! Just so you know we have an 11 year old daughter, and you are right, Italy is not all it's cracked up to be!!!!! LOL!!!!! Oh, we lover her, but whoa! and we're just getting started with her...I think I'm gonna count by blessings about Holland!! LOL!
Thank you so much for your wonderful compliments. I worried, because I am not a writer, but I hoped that by being provided the opportunity to write the article myself I could reach at least one family with DMD here in Louisiana that would benefit from it (or really any other parent fighting for a disabled child). I am so sorry to see that you lost your beautiful son, John. Your strength and faith is truly an inspiration. You will be in my prayers as well.
You know I have walked in your shoes or you are walking in mine. It is raunchy. The hardest part for me was/is I have seven nephews. I had gotten to the point that I didn't want to go to family functions because it wasn't right to see them run/jump/play and John had to watch. He never said anything but his eyes spoke volumes. We did all the things he could do and loved so much. He had a GREAT life with so much opportunity and joy! That is what we parents do. Remember God chose you specifically to have your boys...he knew you would do an awesome job with them. He didn't just pick anyone.
The way we always looked at the situation we were in was.....I remember November 6, 1991, like yesterday. Our diagnosis day.... We learned a lot when the doctor said chronic, progressive, and terminal all in one sentence. They meant patience, love, and lets move ahead. I hope we did all of those things well. All we could do is try to do our best and hope for tomorrow. Back then things were so different. Maybe we would have a much better outcome if John were diagnosed now. But it is what it is. We participated everything we could and as you know there isn't much to "fix" things yet. So, in the meantime for you and your family know I am thinking about you and praying for the best. If you would like to send me a message, question, etc....do that. Just smile everytime you polish that shower chair :)
Hope will turn to faith and someday memories. Bless you all.
very true, i am glad to have my boys around, equipment and all, some days i just look around when they are at school and think, WHEN DID THIS HAPPEN? it seems only days ago they were babies. new milestones are sucky when your kid has dmd. so sorry for your loss, i dont even want to think about that day with us. take care, jenn
I too ran across your posting to Kim, and loved what your wrote. Honestly, I know what you are saying to be true, but my heart is broken. I never want to have this ending for my son or any other. I know that God does not give us anymore than we can handle, but yet as Jared as my only and the sunshine and joy he gives me everyday, I don't feel I could survive his end. I try not to go there since he has time being 8, but I honestly don't know how to stop those moments of time when these thoughts overcome me. These boys are truly a precious gift but I hate this disease. My son hates it. That is why I fight each and every day for a cure or treatment. Bottom line, my faith is what gets me through knowing in heaven there will be none of this. Kimberly, you and all the other moms are an inspiration to me.
Hi Kimberly -- Last June, we got word from our local office (but all camps across the nation were affected) that MDA Corporate office cancelled all camps due to swine flu. Apparently, there were 8 or 10 cases of swine flue reported from an MDA camp in Minnesota somewhere. We were pretty bummed out but they had to keep the kids healthy. There was alot of discussion about it on this website. Alot of parents were upset. Alex will definitely go next year.
Hi Kimberly - Thanks for sharing your beautiful story. I reread it 3 times today. Your son sounds like a great boy. I am sure he brought joy to everyone he knew. Yes, I tell myself that somehow I was chosen to be the strong mom that must handle this...but some days, I think no way.
I try and be positive...I think God could have given Alex to anyone but he chose me to be his mommy. John was lucky to have you as a mother. If you ever get a chance to post photos of him, I would love to see them.
Thanks for the information on the camp. Yes, we are excited for Alex to go. I have heard great thinks about it.
I am so sorry about the loss of your son. So young... He was 10 when my son was born. If you don't mind, I am wondering of your son's progression. Did he stop walking at a young age? Did you ever learn of his mutation?
I have been on this journey for 4 years and it is so scary. Thanks again for posting about the MDA camp.
I am so so so sorry for your loss. I can't even imagine the heartbreak you must be feeling, it must be totally overwhelming. My heart truly goes out to you, even more so since it was so recent and the feelings are even more raw. You and your family are in my thoughts.
How did your daughters handle John's death? Were they close to him? I ask this question because I have heard so many stories from siblings about their feelings towards their affected brother (resentment, not wanting to get too close because they were going to die, etc) and I really want to avoid that with my daughters and encourage an amazing relationship with their brother. They all seem so wonderfully close and I dread the day I am going to have to break the news to them about MD and the effects it will have. I don't know how to do this, and it saddens me that that day of explaining will come too soon.
I am so sorry for your loss. I have a Grandson who will be 4 on August 4, 2008, that was diagnosed with Duchenne about 3 weeks ago. It has broke my heart and I pray every day for a cure. I would welcome any advice or knowledge you would like to share. It is also new I don't even know what questions to ask yet and some questions I am afraid to ask.