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!!

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Wow, sounds like you have your hands way more than full! I don't have half of the issues you do (ie I'm not a single parent and my son still "walks" a little) and this isn't for everyone, but I couldn't keep up the happy face without the aid of antidepressants. Not fond of it, but they have helped. Your mom sounds like a good helper, would she be able to do some online research into products/tools to make things easier? I have read stories, like yours, of other moms when their sons stop walking EVERYTHING becomes extremely difficult. You aren't alone, at least not regarding how you feel right now. Do you know other dmd families in your area? This disease can make the most rational person go nuts!!
Heather,

Just reading your post gave me insight into what a strong woman you are. You are a single mom with two jobs taking care of two boys, one with DMD and heavy weighing issues. My son is 8 and I know things are on the downward spiral. I take it one day at a time. One thing that is difficult is that I work too, and have no computer at home to do research, and really no time to email or post either. I am married, but my husband is not helpful when it comes to stretches, research, ordering meds and vitamins, or basically anything. He's a person who unless he really sees the decline, he's in denial. So I am coping on my own with making sure doctor's appts. are scheduled, I deal with IEPs at school and meet with teachers, and also I'm the one who Nicolas goes to when he needs to talk about his disease. And it becomes so tiresome and it wears on us as parents... but we do it and try to keep it together - my advice is one day at a time.

I have to agree with Cheryl - sometimes anti depressants are a good option, and one that I may be looking into soon. Again, with you working 2 jobs, it's probably hard to find time to go to counseling yourself. Your mom sounds like a good support system. It is good to get the cry out - I cry at times with my sister.

I know that MDA gives assistance (a bit of money) to help with costs, and there are companies out there that will help put in ramps and make homes more handicapped accessible for a low cost. Maybe take a look or ask your mom to help you do some research to see if you can get your bathroom door widened. Maybe even contact a visiting nurses company or whatever they are called near you so that you can get someone in to help with a bath time once a week to give your son the option of having a bath once a week so he can play, and you can have help lifting him out.

No matter what, you are a very strong woman who is dealing with a lot on her plate. I wish you all the best, and hope that you can find some ease and rest time.
Heather: You are under a tremendous strain with all that you have on your plate, especially as a single Mom. Try to enlist as much outside help as possible, whether it be family or friends, or even respite care. Your Mom seems like a good resource. My daughter is not a single Mom, but she does have a full time job and has two little boys with DMD. So I know first-hand about a little of what you are going through. Other than just babysitting, I sometimes act as her "secretary" in handling things she doesn't have the physical time to do, such as medical insurance matters, kids appointments, etc.
Antidepressants or talk therapy might not be such a bad idea. It's like when you are on an airplane and they throw down those oxygen masks. They always tell you to put yours on first before you can help anyone else. Right now, your immediate problem seems to be the bathroom. As Michelle said, look into resources to help you get your bathroom more handicap accessible. This alone would take alot of the physical burden off of you. As a grandmother of two little boys with DMD, my heart goes out to you in every way possible. I know sometimes you must feel very alone, but please know that we are all out here, and possibly just venting to us can help ease your burden a little.

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