I haven't been on here in forever. It seems I don't have time or am just too tired. I am a single mom working two jobs. Devin is 10, he has been having a very hard time with excepting everything that is happening to his younger brother, so bad to the point that he is gonna start therapy at the end of the month. Justin is 8, he lost the ability to walk in March, or should I say that he gave up, part of me doesn'tblame him, watching him fall all the time, struggleing just to walk broke my heart. The school had a big part of him not wanting to try to walk anymore because they said he had to wear a protective helmet in case he fell,I don't blame school, I didn't want him to get hurt but hefelt like he was outcasted evenmore. Justin recieved his ownpower chair the endofAugust, it wasso great to see him keep up with everyone. But I felt like one more part of me was ripped out. In July he couldn't stand anymore even with me holding him up against the wall, he has a stander at school so he is up as much as possible. There is something wrong with his bladder that isn't to do with DMD, his bladder and brain don't communicate right so he really doesn't no when he has to pee and wears pulls ups. Right no he is about 115 pounds, he can't get his wheel chair in our bathroom so I carry him, he says I'm sorry mom, but it's ok, I love you and that's it I've got you, is all I say. I'm not really sure what to say. My mom bought us a seat for the bathtub so I don't have to lift him in and out of the tub, but he doesn't like it, he wants to sit down and play, how can I tell him no, it's hard for me to get you out? I can't do it, I can't tell him no. My family is very supportive, my mom recently ketp the boys ever night for me and she said wow heather I don't know how you do it, it was hard for her to get him in and out of his chair, and I sat there with my mom and cried, which for the past week it's all I've done, there are days I don't know how I do it either, but then there are other days I don't think about how hard it is I just suck it up and do it.
But I feel so alone! I feel like I am gonna just have a break down, I try not to show it in front of my kids. Can someone please help me and give me insite on how to cope! Thank you!!