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momunderquarantine

eekk everyone has germs!

Month

May 2016

I’m afraid of my dryer….thanks mom

So as silly as this sounds I’m totally terrified of my dryer. It’s not the dryer its self more of the possibility of fire. My mom all my life is always warning me of things. Some totally make sense some of them….not so much. Make sure to clean the lint out of your dryer or it can set on fire. Make sure to do x or fire. Make sure to pay attention to your surroundings in the morning because someone can kidnap you and kill you oh and they set you on fire. (that’s the one that doesn’t make much sense also I made up the fire bit on the last one). It took me 30 something years to figure out why I’m so paranoid about fires and other people. Hit me like a ton of bricks, it’s because of my mother.

With all of Katie’s supplies I’ve become like ten times more paranoid. We have her vent, all her other equipment. Not to mention the 12 oxygen tanks that are just chilling in my living room. Which she doesn’t even use anymore but have to be on hand just in case.

So now I’m legitimately terrified of that damn dryer. I clean out the lint trap every time but in the back of my mind is always fire.  I don’t know where I’m going with this I just wanted to share because I totally just turned off the dryer from running even though the clothes aren’t dry because it was freaking me out.

No mark made

Nowhere and I do mean nowhere is there even the slightest mention of my cousin’s death. I googled. I’m not sure why. Maybe curiosity? Anyhow she had a twitter and facebook and there is nothing about her passing. Nothing in the news about her body being found, literally nothing. No mark at all.

I got me thinking how sad that is. You live and you die. That’s the deal we all get we are born. What you do in between the two is what matters. Some of us make a huge mark on the world like Einstein or Henry Ford. Some of us become infamous for terrible things like Hitler or Charles Manson. Some of us become famous and touch others through their talent like Prince or Michael Jackson. Most of us only make a mark in the small scale through family, friends, co-workers, and acquaintances. Then there are the ones that make no mark at all. We never hear about them for various reasons, whether it’s because they burned all their bridges and are all alone or because they never interacted with anyone for whatever reason.

Patton Oswalt wrote a lovely tribute to his wife recently, it was on Time’s website and he said something that really hit home. She didn’t leave a hole, she left a blast crater.

Isn’t that what we should want to be remembered as? Someone that loved, lived, and cared to her fullest? Shouldn’t we all strive to leave our mark in a good way in our loved ones? Not just to leave a mark on the world but because you genuinely care and love the ones in your lives. Life is short they always say without thinking that life is the longest thing you ever do. It matters what you do in between and when someone you know dies I think that’s when we really realize how fragile life is. So I say be curious, learn new things, love your family and friends, let them know how much you care. Every. single. day. because one day hopefully long from now death will come knocking on your door. So be you and be kind and don’t just leave a hole, leave a blast crater.

 

If you haven’t seen the article Patton Oswalt wrote here is the url. It was beautifully sad. (http://time.com/4316653/patton-oswalt-remembers-michelle-mcnamara/).

 

 

Finally…..it’s happening!

Her pulmonologist appointment went amazing!! We FINALLY get to start weaning her!!!!! Literally a year and a week after her trach was placed we’ve gotten to the wean process. So the process goes like this. First we turn off her breathe rate (so she’s doing all the breathing on her own with only pressure support from the machine) for one hour in the morning and  one hour in the afternoon. Then every 5-7 day we up it by an hour until we get to five hours which should be all of her waking hours off the ventilator! Then on May 26th we go back to the clinic and they will cap her for an hour and she how she does with no support at all. If all goes well then we will take her completely off the machine for one hour in the morning and one hour in the afternoon. Then the process goes exactly like the breathe rate process then I’m not sure what happens exactly. I think that’s when we get to cap her during naps and then overnight until she’s off full time. So folks there is light at the end of the tunnel!

It’s been 6 days since her appointment and she’s done fantastic off the breathe rate and I got to bump her up to 2 hours today and she also did fantastic with that as well. Her breathing rate (on her own) has been in the normal range, no desating, and her heart rate has been steady with no retracting or having issues breathing. Every session I do something different with her so I know her reactions. Like I’ll do a session and do physical therapy at the same time or occupational therapy while she’s off the breathe rate. Also playtime and tummytime and she’s aced all of these. KNOCK ON WOOD! I am so excited about the end of the month I hope this month goes smoothly and we can get to the end of the month like now lol.

On another note I have further proof that I have an open nice face because the lady in line in front of me in Meijer basically used me as a therapist while in line. Telling me about her anxiety and how this was the first time she’s been out of the house in a month. So I told her I was proud of her and that I know how much anxiety sucks and just giving her praise for getting out of the house. My only regret is that I wasn’t wearing my shirt that says “Please keep talking I’m diagnosing you”. Really sweet lady I’ll probably never see her again in my life but I hope she gets better.

Shouldn’t I feel something

It’s odd when someone you know passes. Sometimes you are devastated because someone you truly loved and cared about is gone and you feel their lost like you are missing a limb. Other times when it’s someone you knew but not that well you feel sad because they are gone. Then there’s the other other times when you feel nothing at all. It’s still sad like reading about someone in the news that’s died too young but there’s no personal feelings attached. That’s how I feel right now and I’m not sure that’s a good thing.

My cousin Karri passed away last night, they aren’t sure how yet and apparently there will be an autopsy to find cause of death. She’s been into heavy drugs for a long time so it’s not surprising that this has happened. The last time I even saw her was years ago at least 8 years at a gas station and she was stoned out of her mind. I was never close to her even when she wasn’t into drugs. She was always considered to be the golden grandchild while the rest of us were treated like shit by our grandmother. She was never mean to me but we just never connected. It happens. I’m sorry she died in the manner she did and that she died so young but like I said earlier it’s that kind of feeling you feel about someone you don’t know that you read about in the news. It’s sad, it’s a shame but that’s about it.

The most surprising thing about the situation is that she’s outlived her mother. My aunt Ginger is a walking talking advert for why you should never drink or take drugs but somehow she’s still kicking. I don’t talk to her either and have no interest in doing so. Even now I feel no need to reach out to her. She was never a good mother and treated Karri like crap. Belittling her in front of others to make herself feel better about the crappy person she is. The funny part is I know she’s going to ham it up and pretend she was such an excellent mother and make Karri’s death more about herself than her daughter.

Who I feel anything for is Karri’s daughter and son. Though she wasn’t a good mother to either of them and thank god they had a competent father and step-mother, she was still their mother. I’m not sure how either one is doing with this at the moment. I’ve never been close to family members. I sent her daughter a message though just saying that I was sorry for what’s happened and lending any support that I can for her. She really is an amazing young woman she’s had a rough life but she’s smart and capable and above all very kind hearted. Even through everything her mother has put her through she still wants to be able to send her off in a loving way. I can’t say I would do the same. That’s how good of a person she is. If there is a funeral I already know I’m not going for Karri or Ginger I’m going because my cousin’s daughter.

So I guess the title is more of rhetorical question because I do feel something just not for the person that’s passed away.

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