hi mammo,id just like to say first of all i cant imagine what your going through and i mean that in the way,all the fears i have about my daughter i have now and the way im so scared of losing her to this genetic disease is something you have already experienced first of all your son but then your grandson...im truely so sorry for your loss and for what you and your family have gone through...everything you said is so true but your an inspiration in the way you can take time out to care about someone you dont even know like me and share your feelings.yet never lose sight in caring for your loved ones around you that keeps you goin..id like to thankyou for that.i also have loved ones around me and your words reminded me of that..im not alone.,.and neither are you. with love take care
Hi. I am so very sorry for your loss. I lost my son to an hereditary disease at 31 (diagnosed at 16) and then his son was diagnosed at 10 and fought long and hard until we lost him at 18. Losing my son was like someone turned the lights out in the world. With them does go a big part of us, which we never get back. It was the same with my grandson. He looked and acted like his dad, so in some ways I felt my son was still with me with my grandson, and when we lost him it was every bit as bad, and it all felt so final. I am always thinking of what all they have missed, what would they be like, how would they look? So many things I wish I could be sharing with them. I truly understand how you are feeling, and only a mother who has lost a child can understand. People think they know, can imagine the pain, but it is so much worse than one can even comprehend, our children should not leave this world before us. My heart remains broken, sometimes I feel like it's gotten better, other times I feel like it just happened. Fortunately my life has never been about me, but my loved ones, and that alone has kept me going. Thinking of what they've endured makes me want to keep their lives as bright as possible. A big part of you went with your daughter, how could it not? Life goes on, and we do the best we can. I do wish you and your daughter all the best. Take care.