it's not fair. I can't count how many times a day I say that. For all my big talk about hope I am still lost, terrified, and pissed off. I love my little boy so much and I don't want to loss him. I don't want to discuss his life expectancy. I want to buy a 2 story house w/ a basement like he wants because he doesn't know how hard that will be for him in the coming years.
I am sick of people telling me to enjoy the time we have to be thankful. Screw that, how am I supposed to be thankful I get to watch this disease slowly and cruelly claim my boy? That every second of everyday he is one step closer to a wheelchair and his eventual death. I wish someone could show me how to focus on today when the shadow of tomorrow is everywhere.
I cannot understand this and telling me I may never know why doesn't help. I don't understand if there is this plan why are people allowed to grow and become child molesters or murderers while my child will die young because of a stupid gene mutation.
I can't sleep at night lately, the darkness is too much and as I try I cant focus on anything else. I stay up as late as I can watching mindless television until I go into bed and lay there. I have never been someone that goes to sleep easily so this isn't huge surprise but it is making things difficult for me. I am having a hard time doing the things I need to do. i forget to pay bill, eat crappy food that i can't taste , and I look like crap.
I try to put on a mask when i am around other people. i want to appear strong because I really want to be strong. I really want to be the place people can come for comfort because I am acutly aware that is my responsiblity to lead everyone emotionally. I dont mean that as a slight to my husband. He has to lead us financially, He has to handle the logical stuff because that is his strength.
it such a contradiction to work so hard to enjoy every moment w/ him while trying to accept this diagnosis. i honestly do not know how we get thru everyday w/o a complete breakdown. The shock is just not going away. Robbie had a speech delay, and then possible apraxia, and then maybe sensory issues, and now he has DMD. How the hell does that happen? I mean there is no genetic family history of this. i was told i wasn't carrier while i was pregnant with him. i thought we were safe. Turns out that doesn't matter sometimes these things just happen.
I am sorry I don't have the strength to me hopeful today. That today it all feels to hard and i am mad and scared. I feel bad being so negative when so many people haave been wonderful to us. it feels wrong like I owe to them to just deal w/ it and start fighting. i am sure no one expects that of me now that I look at it but still i feel guilty for being so upset.
It's very hard to "keep hope alive" all the time. No Mom facing what your facing can do that - have hope, day in, day out. I try to imagine what it must be like for you, and I simply cannot. No one in their right mind would expect you to be strong and hopeful every waking moment. It's just not possible. Forget the continuously optimistic folks who tell you to enjoy every minute while you can. That may sound harsh, but I am only saying that because they are not Robbie's Mom. They did not carry him for months, give him life and then have to watch his life being cruelly taken back, all while being powerless to stop it.
ReplyDeleteMy only advice is to take one MINUTE at a time. Feel however you want to feel, and don't worry about what anyone else is thinking.