I have been married for 19 years to Norberto Medeiros. We have two children. My precious Jeffrey who now resides with the angels - we miss him SO much. We have a daughter Gabriella Nicole Medeiros - 5 years old.
Name(s) of child(ren)/individual(s) with Duchenne:
Jeffrey Mark Medeiros (4th March 1991 - 12th Nov 2007)
I just read your email and I know exactly how you are feeling. I lost my Erich in 2005, almost 5 years now and it seems like yesterday. I wish I could tell you the wounds get less harsh and easier to deal with, but they do not. It seems they only get worse the longer the time it has been. I still have such a hard time understanding God's plan when he takes a child from a mother. It absolutely destroys our life’s, so why would he do that. I still have immense anger towards God for destroying my family.
It changes the dynamics of the family; no one is ever the same. I have two daughters who were 14 and 22 when Erich died; and it has never been the same. I like you try to get thru the holidays for the girls. I have not yet stayed home for Christmas, we always go away. I cannot seem to bring myself to celebrate such a holiday at home without Erich. It is too difficult.
I think us as moms learn to exist without our sons, but I don’t know how to live again, if that makes any sense to you. I know that Erich would not want me to live like this as he was so full of life, and he never feared his death, and even knowing that, I do not know how to live again.
I wish there were like some magic pill we could take that would help us to live again…if not for us for our sons.
Thank you for sharing your story. We, who have lost our sons, all share that same pain and it is heart wrenching.
Hi Ana, I cant really say that I was all that brave, I just knew Dylan wouldnt make it to see a birthday,the docs told us that many times. I cant say the same if Dylan would have been older I sometimes think I would havent have been the same , you know letting go I really believe somtimes I would have asked him to fight, letting go would have been so much harder. So dont be too upset that you asked your Jeffery to hang in cause I most likely would have asked Dylan if he would have older. But when ever I looked at my little angel,my heart just broke since all the tubes and needles and IVs were somtimes as large as his arm or leg. It was just too much for him have to go through at his very young age and for what we were going to lose him all we had with him was shared time. Thats all god gave us, he just shared one of his angels with us for awhile and we had to give him back. And the memories we have will last a life time, since Dylan changed my life forever he has made me a stronger person.
Sorry Ana I forgot to mention we didnt find out that Dylan had DMD until a month after he had passed and that I do carry the gene but fortunally our 3yr old is totally clear we had him tested right away we couldnt bare the thought that we could lose him too.
Hi Ana, yhea our hearts broke everyday to see our little angel with all those tubes, no body movement except for his head and not knowing what was wrong with him was the hardest part. Since for 9 months he had been just fine in me. I had felt his first kick at around 19 wks and everything was normal so it was like we were in the worst nightmare that never ened. Dylan passed away when he was just 3 1/2 months old we just begged him to let go and I know it might just sound awful but we just couldnt keep holding on to him not that way it want fair to him. We just love him too much. The afternoon he passed June 29. I was holding him in my arms and I just had known that the day was getting closer he seemed so tried all the time, he was no longer enjoying bathtime and usually he loved it so we knew but nothing could ever prepare a mother for the loss of her child. Well that day he was having a great day he was tried but greatday. I held him in my arms my husband was right by my side Dylan looked at us gave us a little smile we told him we loved him soooo much he began to cry and it was like he was looking passed us he just cried and he just began to let go we had a momment of panic so he brought his heartbeat back to somewhat normal he nurses made sure he was fully vented and of course he was. My husband and I just looked at eachother with tears in our eyes, we could see Dylans nurses crying it was his time so we did the only thing we knew we should we told him it was okay to go,that we would be okay. We told him to let go, go back home with the angels and he closed his eyes and did. It all happened so fast so for the every first time I got to really see my angel without those tubes. He was so beautiful a true angel. Dylan passed away at 5:45pm and we got to stay with him until almost 7:45 I gave him his last bath and put on an outfit that I had for him for when the time came. The doctors never gave us any hope we knew we were gonna loose him we just didnt know when. On his death certificate states it was respiratory and heart failure, but in my heart I know god just called him back his mission had been completed so he had to return. So this has been the hardest 9 months of our lives, and were just trying to pick up the pieces and learing and finding new ways to cope and we have too. We told him we would be okay so we have to be.
hi ana thank you for your kinds words and what a lovely thought of all our boys up there together and all meeting at the gates of heaven how wonderful.
just would like matthew to come to me somehow but think that it is still to soon and he is having a rest before he can come to me but in a way i think matthew as already been to see me in a very silly little way about 5 years ago my sister bought matthew a pair of socks with his name all over them have not seen them in 2years,but last week took cloths out off the washing machine to put them to dry and one of the socks was in the washing and a got to say that made me smile for the first time matthews is passing.
thank you sharon xx
Ana; How do you put pictures of your child on this site? Do you think I should even though I've got a ton of them on his memorial site? I'm still not sure how everything works with this group. I know several people on the dmd list have mentioned wanting to join a group like this but I don't know how to tell them to come over here. Do you?