Disabled Mother on a New (and better) Level

…they changed the site’s interface again…

   Kasper finally got a job.  I spent the week before last freaking out because Kasper was hired for an evening/night job in a restaurant. I did my best to be positive and keep my fears to myself – I have no idea if I was successful or not.  He had 2 days of training in the afternoon and then he would start his night shifts.  I was freaked out.  I kept counting my seizures, all but one happened at night.  I kept thinking about dinner time.  I really enjoy having dinner with all of my family.  We only have 3 chairs for the table so I sit on the couch  and eat on the coffee table but we are all close to each other; we don’t have to yell to be heard.  It also seems like I don’t quite feel “right” if I don’t have dinner started by 4 p.m and that’s when Kasper was told his shifts would start.  For some stupid reason this made me panic.  Then I started thinking about cleaning up after dinner with all the dishes and cleaning up toys and vacuuming, blah, blah, blah.  I was thinking about JJ and how he gives me a hard time in the tub.  I can get him in and take him out even with just one working arm and a leg I use mostly as a prop than anything else.  But if he decides he’s going to be crabby and stubborn I have no choice but to leave him in the tub naked, slightly wet, and pretty much alone.  It’s just safer that way.  Between our two tempers, his strength and my inability to literally stand tall and sturdy, it’s an accident waiting to happen.  The kid is a fighter and I am not exactly physically strong enough to handle him.  Needless to say, I was getting pretty overwhelmed by all that was facing me before Kasper even had his first day of training.  I mean, the whole reason(s) he has not been working since my stroke is because my hemiparesis limited me with a baby (JJ just turned 3), my seizures, my low stamina and endurance and newfound ability to become lethargic and fatigued without warning and Kasper was fixing to leave me hanging here alone with 2 kids right as the busiest time of a families day starts. And to add to it, Skas likes to argue about the instructions from his homework.
I kept positive by reminding myself of all the good things Kasper working means for us.  Of course, I could worry about food stamps getting cut, rent going up, possibly losing some medical assistance programs like the “Extra Help” I am on that helps me pay for my medications but that’s in our future no matter what we do.  We can at least be smart about it.  Kasper only plans to work part-time at slightly more than minimum wage.  The cuts shouldn’t be that steep and the reduced assistance shouldn’t create too wide a gap for us.  I’m hoping the transition off of government assistance is appropriately paced in the end.  I’m excited about it, honestly, but I’m also afraid of actually being a disabled mother with no one right there behind me in case I fail.
One of the things I look forward to the most in the first phase of this transition is that instead of being in that smallest chunk of the “47%” that just lays around all day “mooching” off the government, we are going to be a part of that larger chunk known as the “working poor.”  It sounds like a horrible thing to look forward to since it shouldn’t matter what or how other people view you but it doesn’t stop the sting when people get nosy about your situation and you fill them in on some of the smaller details.   It’s like you can see them evaluating you while they’re having a fake conversation with you.  They’re trying to decide if you actually “need” the assistance and do you “deserve” it?  We need it, but do we deserve it?  How do you tell who deserves it?
Luckily, Kasper was put on a day shift.  I couldn’t be happier.  I guess I could be happier but that’s beside the point.  I’m here alone with no kids from morning to afternoon.  I really haven’t done much since I’m trying to find a routine for my new schedule but I am enjoying all of this quiet! I don’t know if I’m an introvert but I am very “in my head.” Maybe I am, it depends on which meme you’re looking at, I suppose.
80926322ecb07e68aa85f337bb871ed1imagesI like to be alone, to do things my way, with my own rhythm in my own pattern.  I like to daydream, to let my mind wander.  I don’t appreciate drama, I don’t like friends that always want to do something or go somewhere and I like the quiet.  When I don’t get this time to myself I start to feel pent-up inside and I become aggressive like a wild animal tired of the cage it doesn’t understand and yet confines it.  But get me around people I am comfortable with like co-workers or something and I am extremely vocal, hyper and even animated.  But it’s not consistent.  So I don’t know what that is.  I really don’t care for labels but it helps others understand who you are if you have them.  Either way, I get this time to myself now that Kasper is working days, I get to start dinner when I want to, everyone is here to eat it and Kasper will still have an afternoon or two off in the week to do things like grocery shopping and whatnot with me.  It’ll be good; good for us and good for those people judging us.
I had my first challenge last weekend.  Kasper worked all weekend and I was super nervous.  I’d be alone with both boys all morning and afternoon and what I felt made it worse was that Kasper was working a couple extra hours both days.  I was so unsure if I could handle it that I lectured Skas over and over about how important his assistance would be.  I think he started zoning out after the tenth time of telling him this.  He’s a good boy, I have confidence in him, but I really needed to be sure I had some sort of back-up if I needed it.  What if I planned things in the wrong order and the day just fell apart and Kasper came home to find the house smeared in poop and me in a corner curled up in a ball? It’s totally senseless mental rambling but I  panicked anyway because I let these thoughts become rooted in my head and I was fully convinced that I would fail. A kid would get hurt because I’m not fast enough to catch them, JJ would throw a temper and I’m not strong enough in any capacity to handle it ans Skas would cry in his room all afternoon because I’d be so frustrated and disappointed in myself I’d take it all out on him.  Clearly, I give myself too little credit.
The weekend went fine, Skas even spent all of Saturday outside and JJ gave me very little problems.  We spent a lot of time working on his potty training and he did really well; it was one of those days that had me walking away polishing my nails on my invisible lapel. I was proud.  Sunday potty training didn’t work out so well but everything else went decently.  Except JJ had a bit of an attitude and was whiney but you can expect that with all kids.  I was proud of myself, as well as my kids.  We did well together and for the first time since my stroke I felt like a parent to my kids again.  I can love my kids all day long, I can hug and kiss them as often as I want, I can yell at them while Dad does the enforcing and I can hang out with them for a couple of hours until Dad gets home but when I spent two whole days with both my boys for the first time since my stroke I actually felt like I was doing more than simply contributing, being a backup voice and helping keep the slack from building up behind my husband.
The second test came this past Tuesday.  No school for the baby so I had him home with me, alone, all day.  I’ve got to say, it was an incredible day.  I always thought JJ was so different from Skas because of his own disability, because of the effect it has on his attitude, his temper and even personality.  But no, the kid has a well-developed character (for a 3 year-old) that I had been missing out on because I was so afraid of failing as a mother.  By the end of the day, I felt like not only a parent but like a mommy to my baby JJ.  He even slept on my lap while we watched cartoons.  He has never done that with me.  When I got pregnant with him all I could think was:

This one’s mine

Skas had been Kasper’s little sidekick since day one.  I was number two in the relationship.  Skas went to daddy for everything and only came to me if daddy wasn’t there.  I accepted this and fell into my role as “secondary” parent because they had such a strong connection.  I thought with JJ I could finally have that.  However, the stroke and resulting disabilities made it feel impossible to ever really bond with him.  I kept my distance, again, out of fear.  Fear of what?  Being rejected by yet another kid of mine.  I saw this last Tuesday that it had never been a real possibility.  Babies only react to what they feel and they mirror how their parents feel.  When you are apprehensive, that baby will be also.  If you are confident, your baby will be also.  If you love your baby, they will love you in return.  I think with Skas, he just has a naturally stronger bond with his dad.  After Tuesday with JJ, I see how foolish it was of me to back so far away from him.  I failed to see just how much over the last 3 years he had adapted to my disability.  I wonder how much more he would have adapted, how we would have adapted together if I had allowed it earlier on.

   So, I’m happy that Christmas will not be completely shabby since no matter what I report today with this new income, it won’t take e(a)ffect (I still don’t know the difference between affect and effect apparently) until January 2015.  I feel better about our situation in housing and on all these programs.  I feel much more confident about myself as a disabled person and mother.  So far, only one week in, I feel like this change will be good all around once the scheduling kinks are worked out.  I’m just very happy that things are finally, finally moving forward in our lives.  I hope I am not wrong about being so positive about it all.


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