I am a mother of three children, 18, 24, and 25. Two daughters and one son who has duchenne Muscular Dystrophy. Erich passed away on October 16, 2005. He passed away in his sleep at home...our lives will never be the same. As much as you know someday your child with Duchennes may die if a treatment is not found, one is never prepared for the utter devastation when it does occur.
Name(s) of child(ren)/individual(s) with Duchenne:
When you wrote about hating Erich's birthday, you hit it right on the nose. Every year, i make this big fuss over Jeffrey's birthday know if i do not ... i will have regrets, when inside i want to crawl into a ball and just cry. I do like the idea you have been given about doing something different then what you all use to do over the holidays. Maybe that is what you should do on his birthday as well. Maybe do something that meant something to him but yet someplace different. It is hard to give advice to someone that is so many years ahead of myself. I almost feel ignornat. But , i think any offering of a way to have strength is appreciated no matter who you are. My son is a growing 14 year old. I spent my entire weekend with headaches from lifting him etc. I feel one hundred percent better now that i went to the chiropracter. Autism is tough. it is hard to use any pieces of equipment to transport. We are trying to transition into that as we speak.
I hope your day is not to hard on Erich's birthday. Make a donation or something in his name. That may make you feel good. I do that monthly. I live pay check to pay check but i always find that time to give something to make me feel like i am making a difference for my baby or someone elses. sorry i am rambling in no apparent direction. I wanted to write to tell you about how i feel the same way about the birthdays and look where i have gone...........
I want you to know, i do not judge you and totally understand about your doubt of your faith. I personally have always doubted faith and blamed god. My aide tells me it is not god..blah blah blah.. he wrote my destiny is my response.............i am sorry i made you cry. It is sad and it always will feel like yesterday. I know that is how i feel even about his diagnosis, i can't began to guess your pain, but i do remember what you wrote way back that prompted this discussion. I do not have to go back and look. I know it , it is in my heart forever. (thoughts and feelings you went through that week you lost him).
Thank you for writing me. I appreciate it. I will read the others later because today, i am not at a place i want to be mentally.
(it would not let me post anymore on the note below so here is the rest)
I know how hard it is to not think of the future; but you have to try not to. I forced myself not to and pretty much learned to live one day at a time. The only time that I really did think of Erich not being here is when he would get sick. I think,other than his surgeries, he may have been inthe hospital about 5 times, and it is those times, I paniked. Usually he had pnemonia, which would really scare me, but I would usaully catch it pretty early, i could tell any time he was just not feeling quite right. One time he wnet to the ER and told me ..mom I dont think I am coming out of here. That was the hardest thing to hear. I begged the doctor to let me take him home on an IV and thank goodness after one night in the hospital, he let him go home with the iV.
It is so hard to understand why our children have been given this disease. I spend so many days being angry at God; and as horrible as this sounds I use to even look at families who had 5 or 6 kids and ask God why didnt you give it to them, why to Erich. And I know how horrible that sounds, but I did think that. It just is not fair to our boys. I too read the stories of these young boys and young men and cry, we allhave such similar stories and our boys all are so much alike. It gives us a place to talk of our sons, brag abuot theer accomplishments and cry with other parents. I never did go on this site when erich was alive, I could not force myself to read about other young men who had died. I would have rather lived in denial for as ling as I could.
I am glad however that Erich did not die in the hostpal, he hated that place, as did I. At lteast God had the compassion to take him when he was athome in his bedroom.
Well now I am crying so I will sign off for now. LDont ever take for granted even one day...forget about the dishes and dirty laundry and spend it with your children.
Take car of yourself.
Hi Marcie. Things are as usual. I am glad the holidays are over. They will never be what they use to be when Erich was here. I have not spent a Christmas at home since Erich died; we go away for the two days at least. I was told to do something different so I do. I cannot seem to be at home, too many memories of the girls and Erich coming out of their room to have Christmas. And in one week will be Erichs birthday, he will have been 29...almost to the 30 that I had so hoped we would make it to. I remember hating birthdays alwasy for Erich though altho I never let it show; it was alwasy that one more year and I never wanted that to come. But like you said so eloquently below ... I turned the page and a new chapter started. A chapter I still am not sure how to live.
i was wondering how you are doing? I read your email response when i find myself on this educational but heartbreaking site. I always have to find myself the strength to come here and when i do , the strength goes right out the door and i weep like a baby.
Ryan was well until May of 2008. He fell ill and lost weight. He lost the ability to swallow so got a GI tube. Then for some reason, he had a spontaneous lung collapse. In and out of ICU until we finally got him back home on Halloween. He was home 11 days and the other lung collapsed. Its still all such a mystery as to why all this happened. He was trached a week before Xmas as a last resort to getting him home again. His right lung is okay but his left (the first to go) is badly compromised. We got him home on Feb 6th and has not been back.
Recovery has been slow. He's put on weight but has struggled with persistent secretions and not doing very well when off his humidifier. The HME just doesn't seem to give him what he needs to keep the secretions moving. He was well enough to start college with one course in September and has been studying criminology. He really enjoys it and its good for him but a cold over the last few weeks has prevented him from going and he is quite weak. We are trying to get him there today for his class.
Since he has been in a power chair, he has loved playing power soccer. It has been wonderful for him. We have travelled and played in tournaments and it has allowed him to connect with all his teammates on a regular basis. I don't know what kids do who aren't connected with others socially.
Life has been hell honestly since all this happened. We are terrified to lose him but wonder if he will ever improve to the point of regaining some of his independence. Time will tell. Until then, we wait for the times when he is feeling up to it then go like hell to try and have some fun. When he's not well, we hunker down and just deal with it the best we can.
I'm sure there is a void every day of your life with Erich gone. I wrote because I saw so many similarities in the two boys.
Your story saddens me and your comments are so true. As i know how you feel when you say that it is you think if was your fault when he passed. I would maybe feel the same way when it happens to my son. But i have to say, now i can tell you. No , mother should have to go through the things we are going through. It is seriously a sick Joke. It is so not your fault no matter what. I am sure you were a good mom and stood beside him. The plan was already written for him. You just turned the page in his book. I say this without religion. I say this because what i believe is life is like a book. Our book was already written we just turn the page... Heaven and Hell is here on this earth and i pray some day i will be beside my son when his life is taken like your son. I know my heart will always be taken by my son's. Nobody can ever fill that gap.
Thanks, for writting me. I am very sad when i come on this site but i know with my son being 14. I have to get ready and brace myself to what is to come. Thank you on my son's beauty. Your son is and was also beautiful.
How sad your story is. It really brought tears to my eyes.. I know how beautiful your son mush of been and it just breaks my heart to think my son is following your son's path and others. I really do feel for you.