When I got sick I went from the stay at home mom who made a promise to herself to always be dressed in real clothes when she got her kids off the bus. To the mom who often gets her kids off the bus in clean pajamas,. Now this was never a knock against anyone who did stay in pajamas all day. This was for my own piece of mind. I knew that once Piper started school I would be sort of lost. I was used to working for years. Now I had no schedule except what needed to be done for the kids. So to keep myself from going down that fucking rabbit hole I made that promise.
Then I got sick and I went from make up every day, hair done, & dressed. To showering only when someone was home in case I fell. Never wearing make up and making sure my hair was clean. I can honestly say I probably went months without really looking at myself in a mirror. Then things started to improve and I started to make somewhat of an effort again. Make up here and there, a hair cut, and some clothes that could double as pajamas. (Thank you leggings)
Things started getting really bad again right around Christmas. I got infection after infection. Ended up with the original problem plus bacterial meningitis and have been going down hill ever since. So I’ve been trying to at least do all this self-care bullshit everyone is always talking about. Taking care of my skin, and hair and all that happy horse crap. Trying to keep up some appearance of a normal person. Rather than letting how bad I feel show. Trying to keep the kids entertained as we are housebound because I can’t even drive. Trying to laugh off that I had to buy a walker with a seat because I can’t walk around stores anymore. I’m doing all I can to not worry about all that is still unknown. Not think about the several doctor’s I need to call and make appointment’s with but I can’t bring myself too.
I am trying so hard not to fall down the rabbit hole. I can’t allow myself to give up or even give into depression on top of all this. I’m not sure why I have thought all this girly crap was going to help. Maybe I bought into the whole looking good can make you feel good thing. I read all these blogs for chronic illness and caregiver pages and you always see the same posts: You Have To Take Time For Yourself. Yeah, my time for myself is in the middle of the night when they are all asleep and I can’t sleep because of the pain. I can’t read a book because I can’t concentrate. T.V. is a joke. I have the attention span of a gnat. My arms wont allow me to do crafts. I can’t clean when they’re sleeping because I will wake someone up. So I surf the net and do weird facials. At least I’m holding myself out of the fucking rabbit hole.
The hub’s works 50-70 hour weeks in order for me to stay home with the kids. This is the way it’s been long before I got sick. I was just lucky I had stopped working before getting sick. While me being sick has changed the role of stay at home mom for us, it was an easier transition than if I had been working.
The hub’s takes off very few days. Typically any off days but Sunday are focused around mine or Riley’s appointments. Because of the possible spinal fluid leak I had to do a series of week long tests this. We were not able to know ahead of time what the times of each appointment would be day to day. So he took a week of vacation in order to make sure these tests got done. That is just part of marriage, right? In my eyes yes.
What makes the realtionship though are the times he held me when I cried because I’m afraid, the never ending jokes to get me out of my own head, making sure I’m eating and doing all the things I seem to forget about, and the icing on the cake…lemon bars. Out of nowhere I started having a craving for lemon bars. I posted on Facebook a few times about it…finally flat out telling my sister she needed to make me some.
Yesterday after a long week for himself as well, he went to the store and bought the stuff to make me leomon bars. I just ate another and as bad as I feel, that lemon bar made all the difference in the world. You see he’s dealing with his own stress, seeing me hurting, worrying about and raising kids, and then work. But he has put all of that aside this week to help me through it. To make me lemon bars.
I decided to call this blog/page If You’re Flappy and You Know it for a couple reasons. The first being the first time Riley ever followed instructions was when I was singing that song. So much so that I sang it all the time and added more and more crazy steps. Each one helped him follow multiple step instructions. The second being I saw the happy brought to Riley when he flapped. Long before I decided to reach out to find others who might understand our journey I was saying “Happy and flappy.” Even at that stage I knew how important it was that he be able stim. That he needed it to regulate so many emotions and feelings. We were lucky that while I had to push for him to be able to stim in school he was able to somewhat. This year he got the greatest teacher who knows her kids and just rolls with the stims.
I keep seeing so much about the fidget cubes and spinners. So many people are getting a little glimpse into the ADHD/Autism world without even really realizing it. These things are a real tool for so many people to get through their day. It just so happens this now the latest toy craze.
We all stim (self-stimulating behavior). I am a pen tapper, swayer, knee shaker, and doodler myself. Oh where are all my fellow pacers while talking on the phone? Yep, even that’s a stim. So I personally think these things making it into the main stream have opened up a door to the not so main stream. I know I’ve had talks with people about how they’re used to help kids like Riley and all of a sudden his flapping makes sense. Piper has told me about talking about it with kids at school. So wooo hooo for some awareness. But and you know there was going to be a but, not enough people are talking about what they were made for. Not enough people are saying yes, that kid who is flapping is no different than you in this way. They just are flapping, finger flicking, pacing, rocking etc. instead of tapping their pen or shaking their knee. It’s all helping you both deal with a situation. One is just not considered the norm. One might seem over the top. But it’s the same thing. So if you see a kid out flappy and happy or flappy and angry even remember that fidget spinner you got your kid and thought was so fun. Oh, by the way Riley has spinners and a cube. He thinks they’re stupid.
I am trying to get the house cleaned up for family coming in for Riley’s first Special Olympics meet in a couple of weeks. The problem is that I am not supposed to do much because of the leaky brain and meningitis. Well the real problem is I can’t do much really. I’ve been told before to stay in bed and it hasn’t ever stopped me. I can’t manage more than 20 minutes of cleaning before I have to rest. Reaching over my head to doing anything is near impossible. If I bend over the vertigo is bad. If I climb up it hits bad. I’m a freaking mess. So you can imagine just doing the usual stuff for the kids is hard now. but I am doing as much as I can,
I got a lot done today without hurting myself too bad. Piper was helping and chatting my ear off the entire time. I decided to come into the computer room and either mess around on Facebook, or take the 20 minutes to straighten the toy and jacket explosion. Open up good old Facebook and every single post in my feed is from the PTO at Piper’s school with pictures of the father daughter dance. She had already asked her Daddy and he wasn’t able to do it because of work. So she wanted to ask her Uncle Steve. Then I got stuck in the hospital and I forgot all about it. She was hanging out with me begging to help me clean, instead of at the dance. Now don’t get me wrong she loves to clean. Which is surprising because she is a mini hoarder who wants to recycle everything into art. But I know a lot of her enthusiasm is because she wants to help me.
See those cute pictures with all the little girls dressed up with their dad’s made me think. Am I failing them as a mother? Yes, I know these are some strange and special circumstances. Every person I know is giving me shit about worrying about cleaning for company. And I truly am not worried about it because I refuse to make myself worse. But you see while I was in the hospital they were scared but they were having a ball. Big brother, trampoline, Uncle Steve, the park, Aunt Sally, cousins…pfffftttt I get it.
But does this mean those things were so cool because they never get to do that with me. I can’t do the park and Riley with the way I move. I can’t get on the trampoline. I try as hard as I can to do what I can with and for them. And I know while it’s not enough it’s all I can do. Is my health messing them up? My inability to be the mom I used to be. I try. They’re always in the front of my mind. Something I can do with them to give them the attention they need and deserve. Why do you think I have to clean for company? Because it’s all about them and I save my energy for them. By not being able to do some of the normal things am I messing them up?
They’re great kids. They’re caring, funny, smart, goofy, loveable little people. Who have had to deal with a lot for their ages. Up until now I really thought they were fairly well adjusted all things considered. But this makes me wonder if I am way off. I’m terrified I am failing them.
I’ve been in the hospital with bacterial meningitis and what they believe is spinal fluid in my mastoid cavity. So putting it mildly I am sick. Like seriously scaring me sick. I’m in a lot of pain and am fairly well medicated…So bare with me.
I have never been one to ask for help but from a few people. I don’t even take it when it’s offered. Even when I do need it, I will just figure it out myself. The sad thing is most of the reason I say now is because I’m embarrassed by how my house looks. Now I was never Suzy homemaker. If you remember I’m a stay at home mom..Not a housewife. Just as I was first getting sick I was picking out paint colors to paint just about every room. That I’d course didn’t happen. Add in 2 kids, 3 dogs, a kitten, and me with a broken body well my house is nothing like it used to be. We have oil heat so we get this crazy film on the walls. I always did a deep spring and fall clean. It’s been 2 1/2 years. So you can imagine. I can’t scrub, bend over much, or really do much.
I realized I have about two and half weeks to get my house in order for company. Some of which will be staying with us. It’s all family. Who knows I’m sick. But still I don’t want to be embarrassed. My plan is to try and do one thing a day that I can. If I can’t I might have to ask for help. It scares me that I am to this point. I might have to accept this whole you’re really sick sick. This might not ever go away. I might not ever get my old life back.
Then again I might just say fuck it and get the few super important stuff done. Let everyone just deal and be happy they’re here. I just don’t know if I can do either of those.