I don't usually write about my mom's illness. It angers me, saddens me, and robs me of emotion all at the same time. But today I feel the need.
In case you haven't read the tabs on my blog, my mom has ALS, or Lou Gehrig's disease. She's was diagnosed nearly two years ago now.
She is paralyzed from the neck down. For weeks I have been saying she has "no muscle function" and the other day someone said something about being paralyzed, and it dawned on me, that's what she is. Paralyzed.
She's losing control of her head. She can't pucker up to kiss me. Her ability to chew and swallow foods gets worse and worse. Her ability to talk is 90% gone, and when she speaks, she is extremely difficult to understand.
When I got married in November of 2007, I imagined how excited she would be when I had babies. I'm an only child, you see, so my babies were her only grandbabies. I knew she would spoil them so, love them so much, be our go-to babysitter. We even discussed she and my stepdad keeping the kids when John and I went on an adults only vacation.
None of this would ever happen.
She held PJ a handful of times when he was a tiny baby, when she could still move her arms and still walk with assistance.
She's never held Maggie. She never will.
She's never hugged either of them.
She's never, ever changed a diaper. Fed a bottle. Picked them up in the air and watched them smile and giggle down at her.
She's never been able to go shopping and pick stuff out by rifling through the racks.
She's missed so much of their lives because she can't come to our house.
She didn't come to PJ's birthday party. She'll never be able to come to one of Maggie's or any of PJ's future parties.
She's never written them a birthday card.
She's never wrapped a present for them.
My own mother didn't meet my baby girl until she was over a week old, because she couldn't come to the hospital when she was born.
My mother in law is our go-to babysitter.
My children will not remember their grandma. If PJ does, it will be in a sense that is not her.
ALS traps you inside a body that does not work. It leaves your brain in tact so you know everything that is happening to you, and you know everything you cannot do.
Because of all these things, she is suffering. She is in more pain than any physical ailment.
Because of all these things, and many, many more I haven't listed, I don't want her to live this way anymore. She's not living.
The O'Gs. No, not the Original Gangstas. But close.
Tuesday, April 12, 2011
Monday, April 11, 2011
Well, nice weather, it's about freaking time.
It was unseasonably gorgeous this weekend in Chicago. 75 on Saturday and 84 yesterday. I'm talking beautiful. So we spent 4 hours outside each day, which of course led to glorious early bedtimes and mama being able to relax.
Our backyard is "the backyard." We have a bouncy house (yes, our very own), a slide, a swing, a sandbox, a water table (when it's warm enough), golf, baseball, basketball, lawn mower, Cozy Coupe, big wheel, and a swimming pool. I am talking there is something for kids to do at our house. It's super nice because PJ is never bored outside, and next year when Maggie can actually partake, there will be the addition of girly toys to this mix. Good times.
Anyway, my son is a better golfer than I am. Not that I am any kind of golfer, but he already sets up his hands on the club properly and has the stance down. He also tries to tee up the ball on anything he can. And he hits it pretty far. I am perfectly okay with my son becoming a wildly successful professional golfer. And his daddy wouldn't be able to contain his beaming pride.
Saturday we went to Fogo de Chao with some friends, so MIL babysat. Which is perfectly awesome. She's so strange though. I love the woman, but here's a few things that happened.
1. She locked EVERY SINGLE WINDOW IN OUR HOUSE. Now, our windows have those stoppers on them, so the window only opens about 2 inches, and I always have those on at night. But she closed and LOCKED every single window. I went to open them yesterday and had to unlock every single one.
2. She forces (sort of) PJ to stay up. When PJ doesn't nap, and he plays outside, he's out by 8 (last night 745). She said he went to bed at 830. It's funny. I know he's tired so I get him relaxed on the couch and he inevitably falls asleep. She just keeps him going.
3. She told us she had some of our Chips Ahoy cookies. No problem. Now, after I had some Friday night, there was a whole row left, save for a couple cookies. I went to have some last night and there were 7 left. SEVEN. The woman ate about 15 cookies. Seriously? 15 cookies??? I guess if that's the payment for babysitting, that's not too bad. But 15??
Our backyard is "the backyard." We have a bouncy house (yes, our very own), a slide, a swing, a sandbox, a water table (when it's warm enough), golf, baseball, basketball, lawn mower, Cozy Coupe, big wheel, and a swimming pool. I am talking there is something for kids to do at our house. It's super nice because PJ is never bored outside, and next year when Maggie can actually partake, there will be the addition of girly toys to this mix. Good times.
Anyway, my son is a better golfer than I am. Not that I am any kind of golfer, but he already sets up his hands on the club properly and has the stance down. He also tries to tee up the ball on anything he can. And he hits it pretty far. I am perfectly okay with my son becoming a wildly successful professional golfer. And his daddy wouldn't be able to contain his beaming pride.
Saturday we went to Fogo de Chao with some friends, so MIL babysat. Which is perfectly awesome. She's so strange though. I love the woman, but here's a few things that happened.
1. She locked EVERY SINGLE WINDOW IN OUR HOUSE. Now, our windows have those stoppers on them, so the window only opens about 2 inches, and I always have those on at night. But she closed and LOCKED every single window. I went to open them yesterday and had to unlock every single one.
2. She forces (sort of) PJ to stay up. When PJ doesn't nap, and he plays outside, he's out by 8 (last night 745). She said he went to bed at 830. It's funny. I know he's tired so I get him relaxed on the couch and he inevitably falls asleep. She just keeps him going.
3. She told us she had some of our Chips Ahoy cookies. No problem. Now, after I had some Friday night, there was a whole row left, save for a couple cookies. I went to have some last night and there were 7 left. SEVEN. The woman ate about 15 cookies. Seriously? 15 cookies??? I guess if that's the payment for babysitting, that's not too bad. But 15??
Friday, April 8, 2011
The "Hair Down There" Discovery
I am not sure why this just popped into my head today, but I felt the urge to share it with you fine ladies who follow me, and maybe, just maybe, get a few more followers in the process (I know some of you read and don't follow, come on dammit!!)
Anyway, I suddenly remembered the day -- hell the fucking MOMENT I realized I had pubic hair.
We were at GREAT AMERICA. Yes, Six Flags in all it's wonderment. I was 9. It was me, my mom, my stepdad and my uncle. My mom hates roller coasters. She went on the carousel, and maybe a water ride. So she was basically there so I didn't have to go into the ladies room by myself. I digress.
So I had to go pee, and we go to the bathroom. I go in the stall, close the door, pull down my pants. I'm doing the squat and hover (which, at 9, when you're about 4.5 feet tall, isn't really all that easy). I decide to look down. Sidenote: Had I never looked down before that day? It's not like all the hair just grew that morning or something.
Whoa. I have hair. Between my legs. This is weird.
Continue to take an unusually long time staring at the hair between my legs, meanwhile almost falling onto the toliet (gasp, germs) because my nine year old self cannot hold myself up this long.
I am amazed at this discovery. Must tell mom. I quickly wipe and run out of the stall, to see my mom waiting for me at the sink. I wash my hands.
"MOM! MOM!!"
"What?"
"Come here." I gesture for her to bend down so I can whisper in her ear. She obliges me.
"I have hair between my legs! I saw it just now!"
My mom, to her credit, did not laugh hysterically. She simply patted my head and said, "Honey, everybody does."
I spent the rest of the day wondering what "everybody" meant. Did boys? Did all my girlfriends? Did my mom??? Why did we have hair down there?
A couple days later, I got the nerve to ask my best friend (the best friend who got boobs before anyone else in school, who due to her boobularity forced me to wear a bra long before I needed it, just so when boys would clap me on the back, they'd feel a bra strap) if she knew about this revelation.
"Duh, everybody does."
Anyway, I suddenly remembered the day -- hell the fucking MOMENT I realized I had pubic hair.
We were at GREAT AMERICA. Yes, Six Flags in all it's wonderment. I was 9. It was me, my mom, my stepdad and my uncle. My mom hates roller coasters. She went on the carousel, and maybe a water ride. So she was basically there so I didn't have to go into the ladies room by myself. I digress.
So I had to go pee, and we go to the bathroom. I go in the stall, close the door, pull down my pants. I'm doing the squat and hover (which, at 9, when you're about 4.5 feet tall, isn't really all that easy). I decide to look down. Sidenote: Had I never looked down before that day? It's not like all the hair just grew that morning or something.
Whoa. I have hair. Between my legs. This is weird.
Continue to take an unusually long time staring at the hair between my legs, meanwhile almost falling onto the toliet (gasp, germs) because my nine year old self cannot hold myself up this long.
I am amazed at this discovery. Must tell mom. I quickly wipe and run out of the stall, to see my mom waiting for me at the sink. I wash my hands.
"MOM! MOM!!"
"What?"
"Come here." I gesture for her to bend down so I can whisper in her ear. She obliges me.
"I have hair between my legs! I saw it just now!"
My mom, to her credit, did not laugh hysterically. She simply patted my head and said, "Honey, everybody does."
I spent the rest of the day wondering what "everybody" meant. Did boys? Did all my girlfriends? Did my mom??? Why did we have hair down there?
A couple days later, I got the nerve to ask my best friend (the best friend who got boobs before anyone else in school, who due to her boobularity forced me to wear a bra long before I needed it, just so when boys would clap me on the back, they'd feel a bra strap) if she knew about this revelation.
"Duh, everybody does."
A little bit of a fam update
So my beautiful Maggie will be 6 months old on Sunday. Yes, that's right. SIX MONTHS OLD. Anyway, she can sit pretty good. She's not totally steady -- I wouldn't leave her on a hard surface because she still falls over - but she can sit for a decent amount of time, and reach for toys to play with. YAY!
She also can get all fours like nobody's business. She is constantly rocking back and forth, and can scoot backwards -- she's going to be crawling soon, I think. She will even push herself up on her tippy toes like she is stretching! My baby girl. She's so fucking pretty, too. It's kind of annoying. ;)
PJ is saying more and more words, some we understand, some not, but I wish he would say I love you already!! I am dying for it. He understands so much, which is good. He also is pretty much a pro at going up and down the stairs, which he has been able to do for awhile, but now I am comfortable letting him do it on his own, without me holding his hand because he's such a pro. He also turns anything and everything into a golf club and tries to make his own tees. It's extremely adorable and makes his daddy VERY proud. ;)
He's still waking up at night, which sucks, because usually I end up bringing him to bed with us so he'll stay asleep. But I think he needs a twin bed. I think part of the reason he wakes up is because those crib mattresss are hard -- he needs a cozier bed. I think we might get him one real soon. Because he'll sleep all by himself in our bed, so I don't think it's so much us as the bed! At least I hope.
Johnny boy and I are going to dinner with some good friends tomorrow night to the always awesome Fogo de Chao. I'm excited. We haven't had a date night in a long while.
Have a good weekend everyone! :)
She also can get all fours like nobody's business. She is constantly rocking back and forth, and can scoot backwards -- she's going to be crawling soon, I think. She will even push herself up on her tippy toes like she is stretching! My baby girl. She's so fucking pretty, too. It's kind of annoying. ;)
PJ is saying more and more words, some we understand, some not, but I wish he would say I love you already!! I am dying for it. He understands so much, which is good. He also is pretty much a pro at going up and down the stairs, which he has been able to do for awhile, but now I am comfortable letting him do it on his own, without me holding his hand because he's such a pro. He also turns anything and everything into a golf club and tries to make his own tees. It's extremely adorable and makes his daddy VERY proud. ;)
He's still waking up at night, which sucks, because usually I end up bringing him to bed with us so he'll stay asleep. But I think he needs a twin bed. I think part of the reason he wakes up is because those crib mattresss are hard -- he needs a cozier bed. I think we might get him one real soon. Because he'll sleep all by himself in our bed, so I don't think it's so much us as the bed! At least I hope.
Johnny boy and I are going to dinner with some good friends tomorrow night to the always awesome Fogo de Chao. I'm excited. We haven't had a date night in a long while.
Have a good weekend everyone! :)
Thursday, April 7, 2011
If you really knew me...
I am stealing this from Sara at Life's Recipe because I thought it was a terrific post and wanted to do something similar. So here goes.
If you really knew me...
...you would know that I hate cleaning. I am terrible at it, and tend to "tidy" up more than clean. I firmly believe people are too anal about germs now days.
...you would know that although I hate makeup, and never wear it, I sometimes wonder what it would be like if I did actually know how to use it and did wear it.
...but I worry that John wouldn't think I was pretty without it if I ever wore it, so I never will.
...I think ALS is the most devastating disease a person can have. A person with ALS is trapped inside a body that doesn't work.
...Because of this, I wish my mom's suffering would end, because she's not living any kind of life, and the mom I had is gone.
...I am very picky about who I trust with my kids. I trust my BFF over my SIL. I can't tell you why, and I could never tell my husband that.
...I worry that PJ won't be good at sports and John will be devastated.
...I worry Maggie will hate sports and I will be devastated.
...I hate bugs of all kinds. HATE. Will scream like a little girl for John to come kill one and if he's not home, the kids and I will leave.
...I am a very loyal friend, and very forgiving. However, if you decide that you don't have time for me in your life, I won't have time for you in mine.
...I fell in love with my best friend.
And a few other things:
Maggie is almost sitting up by herself. She's got the tripod down.
PJ gets his own spoons now.
Check out Sara's blog.
If you really knew me...
...you would know that I hate cleaning. I am terrible at it, and tend to "tidy" up more than clean. I firmly believe people are too anal about germs now days.
...you would know that although I hate makeup, and never wear it, I sometimes wonder what it would be like if I did actually know how to use it and did wear it.
...but I worry that John wouldn't think I was pretty without it if I ever wore it, so I never will.
...I think ALS is the most devastating disease a person can have. A person with ALS is trapped inside a body that doesn't work.
...Because of this, I wish my mom's suffering would end, because she's not living any kind of life, and the mom I had is gone.
...I am very picky about who I trust with my kids. I trust my BFF over my SIL. I can't tell you why, and I could never tell my husband that.
...I worry that PJ won't be good at sports and John will be devastated.
...I worry Maggie will hate sports and I will be devastated.
...I hate bugs of all kinds. HATE. Will scream like a little girl for John to come kill one and if he's not home, the kids and I will leave.
...I am a very loyal friend, and very forgiving. However, if you decide that you don't have time for me in your life, I won't have time for you in mine.
...I fell in love with my best friend.
And a few other things:
Maggie is almost sitting up by herself. She's got the tripod down.
PJ gets his own spoons now.
Check out Sara's blog.
Wednesday, April 6, 2011
PYHO Wednesday - Stop Inviting Me to Your Pity Party
It's time for our weekly PYHO, thanks to Shel.
I am tired of pity parties. They aren't fun. They in no way reflect how I want to spend one iota of my time.
It's one thing to bitch. Life sucks sometimes. Bitch away. Bitch about your job, your boss, bitch about not having enough money, your husband sitting on the couch playing video games, bitch about the fact that your kids are in that "I do whatever I want stage", bitch, bitch, bitch. I will gladly join in bitchfest with you, because lord knows we all have something to bitch about.
It's when you start whining, start saying those vague statements, or posting vague FB statuses, where it's obvious you want pity, that I don't give a fuck anymore.
"It's so hard to be happy when everything is going wrong."
Really? Am I supposed to say something caring like, "Oh honey, chin up! It'll get better!" or better yet, "Oh NO! WHAT HAPPENED?" so you can tell me your sob story and I can feel sorry for you. Neither is going to happen. When you unleash your pity statements, I suddenly go deaf. I no longer care about anything you have to say, because I do not want to come to your pity party. Don't say the open ended things so I can ask you what's going on. (Big sigh) "I haven't had any time to even watch Grey's because I've just been so busy." I'm not going to ask you what you've been doing. But if you say, "I've been so fucking busy at work I haven't even watched Grey's. (SPOILER ALERT) what the fuck happened to Callie??" I will GLADLY indulge you. I will even bash your work that I know nothing about. Because you are bitching. Because yes, your life sucks right now, but when you bitch you are putting the attitude that you realize that although your life is crappy now, you realize that OTHERS are having hard times as well, and a lot probably harder times than you. When you have a pity party, you think you are the only one. And let's be real. You're not. Someone has it worse. Probably a lot of someones.
Some people, who I DO feel sorry for, never have the pity party. Most of the time, the things they deserve to be sad about aren't even the things that bitch about. And then there's the ones who complain and whine about things that in reality aren't even worth it.
So the next time you want to whine, make a vague statement that is begging for me to inquire, do me a favor. Send the invitation to someone else.
Monday, April 4, 2011
Monday Musing
So, the music wasn't the end all of Maggie's sleeping issues. I am hoping my poor little girl is getting teeth, because otherwise, I don't know what to do. She's waking up often, and it's taking a toll on me. She seems to be doing the pain cry as opposed to the I just don't want to be in my crib cry, so maybe we'll get some teeth soon and then I can get some sleep. Wowsers.
It was a beautiful day yesterday and we were able to play outside a lot. PJ is quite the golfer. He hits his golf balls pretty far. Maybe he'll be the next Tiger Woods -- but a moral Tiger Woods, of course.
I had girls night out Saturday and it was so much fun. There were 8 of us and we did fondue and it was just a great time. All of us are now married and most have kids (two pregnant ladies) and it was just great to get together.
And Finally, my beautiful baby girl had her six month pics this weekend. Tell me she is not absolutely fucking gorgeous. I mean SERIOUSLY.
It was a beautiful day yesterday and we were able to play outside a lot. PJ is quite the golfer. He hits his golf balls pretty far. Maybe he'll be the next Tiger Woods -- but a moral Tiger Woods, of course.
I had girls night out Saturday and it was so much fun. There were 8 of us and we did fondue and it was just a great time. All of us are now married and most have kids (two pregnant ladies) and it was just great to get together.
And Finally, my beautiful baby girl had her six month pics this weekend. Tell me she is not absolutely fucking gorgeous. I mean SERIOUSLY.
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