Help to create a world without ALS

If you are a regular reader of my blog, you know I lost my mom to ALS, or Lou Gehrig's disease, just a couple months ago.

ALS has been around for 70 years.  We are no closer to curing it now than we were then.

ALS is a debilitating, devastating, horrible diease.  In less than three years, my mom was stripped of her ability to walk, talk, eat, smile, move a finger, scratch an itch.  She was completely paralyzed save for blinking her eyelids.

I watched it destroy her body.  I watched it destroy her spirit and her mind.

I watched it take her from me.

We participate in the Walk to Defeat ALS, and have for the past 3 years. This will be our fourth walk, and our first walk in her memory.

I hate that my mom suffered through this horrible disease.  I hate that other people are still suffering, and still more will.  I hate that because not "enough" people have ALS, the government provides no funding for research towards a cure.  It's up to donations.

I know many of you donate to other causes.  But if you can, please consider donating to me in my quest to help find a cure for this disease.  We shouldn't have to live with this in the world.

To learn more about ALS, please visit the ALS Association.

To donate to me -- and no donation is too small, please click here. You can also donate to PJ or Maggie.

Thank you.

MLK Weekend

This particular weekend isn't usually a great weekend for us.

In 2009, John's best friend's dad died the Friday of MLK weekend.

In 2010, John's dad was admitted to the hospital again.

In 2011, John's dad died -- the Friday of MLK weekend.

We celebrated my father-in-law's life with a remberance party on Saturday at my SIL's house.  We had all his favorite foods.  Friends, family gathered.  We did shots.  We watched football. 

I have no doubt he was smiling down on us.

Due to the ominous things that have occurred this weekend, I had a feeling that we were going to lose my mom this weekend.  Maybe not this weekend, but I was on edge about it.

Two people in her life told me on Thursday about dreams they had about her.

In one, she went into the ocean and started getting better.  Told her friend she had contemplated suicide, but knew she had to just fight ALS for a little while longer and they would have a cure.

In the other, she was climbing out of an apartment window onto a fire escape.  There was a lot of people around, most of them her former boss never knew.  He kept telling her to be careful, and she kept saying, "Don't worry, I'm fine."

I'm not really superstitious, but these dreams seemed telling to me.

They still do.

I want her to be at peace, I want her suffering to end. 

But I am not at all prepared for it.

PYHO: Cruel and Unusual Punishment

I read something on Facebook the other day.  It was something along the lines of "I pretend to sympathize with my friends when they complain about fighting with their mothers, when I wish I had a mother around to fight with."

Technically, my mother is still here.

Well, her body is.

I would give ANYTHING to have an argument with her.  To get exasperated with her, to complain to John about how annoying she is.

I'd give anything to call her and tell her that PJ said water last night.

I'd give anything to have her come over Saturday night to baby-sit.

I'd give anything to have her sign my birthday card.  Or come to my kids' birthday parties.  Or send me an email. 

To hear her say she loves me.

To have her hug me back.

To have a girls day where we go to lunch, and to the spa, and shopping.

To have her make me egg salad.

I wish she knew that PJ loves bananas.

I wish she knew that Maggie loves grapes.

I wish she knew that PJ loves Buzz, Cars, trains, and dinosaurs.

I wish she knew that Maggie says hi, bye, ma, da, and mine.

I wish I would have known sooner that the last years she'd be alive would be cruel and unrelentless.  That they would consist of her being trapped in a body that doesn't work, unable to speak, eat, move or enjoy any part of life.

I wish I could bring myself to go see her more.  I wish it didn't make me so depressed, so sad, so helpless that I would rather not see her.

I wish I could help my stepdad.  He is overwhelmed.  He won't get hospice since she won't accept that she needs it.  I worry everyday something would happen to him.

I wish she would die so I could finish mourning her properly.  So she could no longer be in pain.  Be suffering be miserable.

It's the worst disease I've ever seen.  It's cruel and heartless.  It affects not only the patient, but everyone who loves them.

Every time I see her, she has withered away a little more.  And every time I see her, I think it can not be possible for her to look or get worse.  And I am proven wrong every time.

PYHO: Anxious

Last week, a man named Tim LaFollette died. 

Tim was 31 years old.

I never met Tim, but I watched his story unfold.

Tim had ALS.  He was struck young because he was one of the 5% of sufferers who have familial ALS, where pretty much everyone in the family gets it.  His grandmother and mother died from it.  He knew he would too.

A web series was created to follow his story, which was how I found him.

If you'd like to learn more about ALS and tim, I'll give you a link to the first video at the end of this post.

Tim embraced his disease and did everything he could to stay alive as long as he could.

The opposite of my mom.

Which is fine with me, because people should choose what they want to do. Tim still went out, Tim still had visitors, Tim lived as long as he could, whereas my mom just didn't.

She needs hospice.  Desperately.  She's in pain.  But she can't get pain medication without a nurse or doctor coming to the house, and she won't get it.

My stepdad.  In denial that she needs it.  In denial that he needs it.  Because he needs help.  And a break.

I've spoken with her nurse from the doctor's office, since she refuses to go to the doctor.

Jennifer tells me she's end-stage, and probably has about six months.  Could be more, of course.  Could be less.

She's going to die.

She could die in pan.  Or she can die comfortably.

My uncle, my mom's brother, is coming in from North Carolina to visit in November.  He decided this when he was here in July, figuring it would be the last time he will see her.

I think my mom will leave this world after he comes.

And I am anxious for her to.

Because it's very difficult to mourn her when she's still here.

And I've been mourning the loss of my mom for over two years.

Here is the first video of the Often Awesome series, taken right after Tim was diagnosed.    Rest in peace, Tim.

PYHO: Trapped

Linking up with Shell again for PYHO.

For all intensive purposes, the past month or so has been pretty great.  We went on vacation (more on that tomorrow) and I got a new job and am getting hell out of this terrible place.  My kids are amazing, my husband loves me.  Life is pretty good.

But no matter how awesome life is going, there's a cloud that hangs over me.

I don't know that I've ever said this in these words.  I always beat around the bush.

I want my mom to die.

I haven't seen her since vacation.  She has no life at all.  She can barely even move her head any more, or sip from a cup.  My stepdad has to carry her from place to place, and when he put over his shoulder, she was like a sack of potatoes.  She's been like that for awhile, but for some reason that time, that image, seemed so much WORSE to me.

She can't say much, but you can make out (sort of) Hi, Love you, Pretty (Maggie), but not much more.

I called her after vacation and she tried to say hi, but I could no longer make out.  I only knew it was Hi because it's my mom.  Before, anyone would have been able to tell it was Hi.  Not anymore.

She sits in the family room, on the couch or in a chair, all day long.  She can't move.  She can't even move to tap her finger, or to move a hair from her face.  She doesn't even really sneeze ever because the muscles that cause you to sneeze are paralyzed.

Someone feeds her.

Takes her to the bathroom.

Wipes her.

Moves her hand if she wants it in a different spot.

She can't do anything.  Her life is one of nothing.  And no matter how happy it makes her to see us, and her grandkids, her life is NOTHING.  She has no life.  Seeing people you love cannot overcome that sadness, that depression, that ache to simply be able to pucker up to give someone a kiss.

I know she is miserable.  I know she is not accepting help because she has finally accepted the fact that she wont' beat this.  That she can't win.   That she's going to die, and most likely soon.  That she can't do anything she wanted to do before she died.  That she'll die never holding her grandchildren.

At least she knows I love her.

And I love her so much, I want to let her go.

When things suddenly turn everything upside down.

Two years ago today my mom was diagnosed with ALS.

PJ was just two months old.  I was still on maternity leave.  It was a Wednesday.  His christening was that Sunday coming up. 

I had set up the appointment for my mom at the ALS clinic, because I'd read that you should go to an ALS specialist so that someone with experience can determine for sure whether or not you have ALS, since there is no definitive test for it.

I had set up with the expectation she was going so they could tell her she did not have ALS, something else, and she could stop worrying about it.

I'll never forget that phone call.  My phone was on the charger, sitting on the stairs.  It rang and I picked up my 2 month old son and went to the phone.

It took all my strength not to drop the phone. 

It took all my strength not to burst into tears on the phone.

Prior to this day, my mom had some issues with her hand, and a little with her foot.

After this, it seemed like the disease plugged ahead full force.

She continued to work for about a month after her diagnosis.  She tripped one day and cut her chin.  She fell another time.  On my parents wedding anniversary, June 25, she fell again and had to go to the hospital.

After this, her HR person came to the house and told her they thought it would be best if she retired.  It was too dangerous for her.  And they were right.  Her firm was incredible -- gave her 2 months of severance, full benefits, made sure she got her long-term disability coverage.

They raised $20,000 for her.

Her boss offered to pay for, and continues to pay for, her home health care aide, because my stepdad can't afford to stop working and they can't afford to pay for it themselves.

At the beginning, my mom would say she was gonna beat it.  That she was gonna get better, and be able to stay home still so she could watch PJ for me.  For free, of course.  Her eyes would dance and gleam when she said this.

Then the disease continued to progress.  Her other hand was getting stiff. Her legs.  It was difficult for her to walk.  She couldn't cut her own food.   She needed a wheelchair if she had to walk more than a couple feet.

She couldn't pick up PJ.  Or change his diaper. 

She couldn't go shopping with me anymore.

In the early days, we went over there almost every weekend.  As she got worse and worse, it became more and more difficult for me to see her.  I was losing her.  Right before my very eyes.

I never imagine my children wouldn't know my mom.  I never imagined my mom wouldn't be able to come to the hospital to meet her granddaughter.  That she wouldn't meet her till she was 3 weeks old.

I never imagined she'd miss my husband's 30th birthday party.

I never imagined she wouldn't be able to come to PJ's 2nd birthday party.

I never imagined I'd never be able to ask her to babysit, something she LONGED to do.  Something she offered to do when I was 12 weeks pregnant, saying we could go on vacation, and she'd take off work and keep PJ so we could enjoy ourselves.

This disease is the worst I've ever seen.  It robs you of your body, piece by piece.  You are trapped in a body that doesn't work.   It's been around for 70 years and there is nothing to slow it down, nothing to help it, nothing.

This day, two years ago, the question, "Hey, how's your mom doing?" took on an entirely different meaning.

To read more about my mom's condition, please click on the ALS label at the bottom of this post.

PYHO: Letting Go

Once again, I'm linking up with Shell for PYHO.

And I apologize for the somber feeling of my posts today and yesterday.

It's been brought to my attention that my mom is starting to give up.

She doesn't think the doctors, aides, equipment will help her.  She doesn't want to use them.

She doesn't want to extend the inevitable.  What's the point of living longer when you are trapped inside a body that doesn't move?  All the stuff that can be done will only prolong her life -- for how long?  A month?  Two?  Six?  We don't know.  And what kind of life is it?  It isn't one.

I don't blame her.  And if she is done, if she no longer wants to live this way, I support her 100%. 

And I am going to tell her this.

I am going to tell her that I cannot imagine sitting in one place for an entire day.  That if a piece of hair falls in my eye, I can't lift my hand to move it, I can't open my mouth to ask someone to move it for me.  I have to sit and wait for someone to hear my grunt or noise and somehow gesture with my eyes or maybe one or two face muscles what I need done, because that's all I can move.

I am going to tell her that I cannot stand to see her suffer this way, and I understand if she no longer wants to. 

I am going to tell her that I will be okay.  That I love her more than anything, and I will miss her like crazy -- and that I already do, but I am totally 100% in support of whatever she wants and respect her decision.

I am going to tell her it's okay for her to let go.

It's okay to leave.

Because she's not living.  Her body has failed her.  Her mind is starting to fail her because she is depressed.  Who wouldn't be?  If she gets on anti-depressants, will she want to live?  Why would she?  Nothing will change.  She still won't be able to wave hello.  Or kiss her grandchildren.  Or have a glass of wine.  Or move.

My stepdad wakes up every two hours at night to move her.  So she doesn't stay in the same place for two long.  She can't even move her foot if she wanted to.  I wonder what happens if she wakes up say, half an hour after that.  She can't tell him to wake up.  She can't shake him awake.  She has to sit there and hope he hears her grunting or just wait for him to wake up.

I am hoping she can get some hospice care -- not for her, but for my stepdad.  He needs help.   But will he take it?  I doubt it. 

So I need to ler her know that I love her, that she'll always be with me.  That I am not selfish enough to expect her to live this way when she has the most horrific disease I can think of.  I am not sure how I am going to have this conversation.  She can't say anything back to me.  But I need her to know she doesn't have to stay here for me.

I already miss her.  A good blogger friend put it best.  I hate that it would be easier if she weren't around so I could finish mourning her.

It's okay Mom.  Grief is a part of life.  I love you and I always will.  I respect your decision.  Go.

Who would have thought a phone number could make you cry.

I was sitting here at work, ecstatic about the beautiful weather, when my phone rang.

I looked over at the phone and saw the number on the Caller ID.

It was my mom's cell phone.

My mom can't make phone calls.  I picked up the phone in a panic.

"Hello?"  I couldn't say Hi, Mom, because I knew it wouldn't be her.

It was Linda, her best friend, who I've known since I was in the womb.

She visits my mom every Tuesday. 

I wrote a message to my mom in her Mother's Day card.  I told her not to read it while I was there, to read it when she was ready, because it would probably make her cry (ALS makes you cry and/or laugh uncontrollably, my mom is more of the crier).

She waited till today, till Linda came over to read it.

She had Linda call to tell me it was totally totally awesome.  And she loved me very much.

I told her what a great mom she was.  I told her how hard it was for me to see her in pain and suffering, and how I am sorry I don't come by as much as I should but it's so difficult for me to see her that way.  I told her I couldn't imagine what she's going through but I could never find enough words to tell her how much I loved her.

I told her that she showed me what it means to be a terrific mom.  And that I'll spend my life trying to be half as good as she was.

I could hear her crying in the background.

Me?  I'm in tears because the last time she actually called me I didn't realize it would be the last time. 

This time, I know.

PYHO: Losing Mom

Linking up to Shell once again this week.

I posted a couple weeks ago about my mom, and was told by a friend I should continue to blog about her, even though I try to keep my blog upbeat and happy.  But today I feel the need again, as she's been on my mind more than usual lately (if that's possible).

I miss bullshitting with her.  I miss telling her stories about my friends -- who all know and love her -- and watching her crack up.  I miss her head tilt and smile when I talked about certain friends she loved so very much.  I miss asking her what she thought about the dress I got for so-and-so's wedding.

I miss the email I'd have everyday when I got to work.  I still have the very last email from work she ever sent me.  I sometimes still pick up the phone to call her at work, when she hasn't worked in nearly two years.

I hate that when I need advice about something with my children, I can't call her, because she can't tell me.  I hate that I've raised my children pretty much without any guidance from her -- not that I always needed it, but before, I would have told her when PJ coughed, or Maggie was fussy, on a daily basis, because we spoke on a daily basis.  Now I just tell her the milestones, usually over email that her caregiver types or when we go visit her.

I hate that we can't go out shopping, or out to lunch.  I hate that she can't watch my kids when John and I want to go out or have something to do.  I hate that she told me she would take them for a week when John and I went on our 5 year anniversary vacation, that she'd take the week off work and they'd do all kinds of fun stuff.

I hate that I hate going to her house, because seeing her this way makes me sick to my stomach.  I hate that I'd rather NOT see her because it's just so terrible to see the woman who was always on the go, so vibrant, so full of life, so loud, boisterous, such a loving woman be confined to whatever spot she was put it, without so much as being able to lift her hand to brush a piece of hair out of her face.

I hate that I want her to die, because her quality of life is nothing, and her life sucks beyond all stretches of the imagination.  I hate that she knows EXACTLY what she is missing out on, because her brain is perfectly fine.

I hate that she will never ever be able to wear the 65 plus pairs of high heels that she loved to wear again.

I hate that she will never be able to wear the dress she wore to our wedding again.

I hate that she will never attend one of my children's birthday parties, school functions, sporting events or anything else they do.

I hate that I will never receive another birthday card that she signed.

I hate that I cannot find the last birthday card she did sign.

I hate that I constantly think about all the plans that will be made when she does die.  I hate that I think about if my stepdad is going to want to move out of the house and give it to us.

I hate that although I know these feelings are normal and expected, I feel like a selfish asshole.

I hate that my mom is physically here, but my MOM is gone.

Paralyzed.

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.

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.

Babes, and other stuff, but not happy stuff

Good night of sleeping for miss Maggie last night.  Good thing too.

My FIL is back in the hospital.  There's a laundry list of things that are wrong with him, and things that could be wrong with him, so I'll save it till we have an answer.

I never thought, at 31 years old, when I have two small children, that the imminent death of not only my own mom, but my husband's dad wou.ld be something to be concerned about.  My grandmother was 82 when she died.  John's grandma was 77, and he still has his other three grandparents, all nearing 80.  Their children are in their 50s.  Why do we have to worry about this in our 30s??

I'm amazed my FIL is still around, to be honest.  It defies logic.  It also infuriates me that the things that are wrong with him he did to HIMSELF, whereas my mom is suffering from what I am convinced is the worst disease you can possibly have.  Through no fault of her own.  Through no ability to prevent, treat or cure ALS.  I've seen her go from the never stopping, always doing something, spunky mom that I had to someone who cannot move at all on her own, barely can speak, and has wittled down to 93 pounds in less than two years.  And I have to know that she KNOWS what is going on.  It's the worst fucking disease out there.  I get the cancer is bad.  I get that other diseases are bad.  But not only is ALS so fucking terrible, there's no funding for it.  There's no research, because the government doesn't think enough people have it.  Nice.

If my mom is here one year from today, I'd be beyond surprised.  The Universe has shit on us for awhile -- we've gotten some amazing things too -- our wonderful, amazing, phenomenal kids.  PJ and Maggie are the world to both of us.  I honestly don't think we'd have gotten through any of the bullshit without them.  But we've lost a baby, we've lost Neo, our dear dog, my mom got diagnosed with ALS, John's dad has so many things wrong with him.  I just hope, Universe, that you don't decide to take my mom and John's dad around the same time.  Because that would just be the cruelest punishment for two people who really, really don't deserve it.

This has nothing to do with babies.

But occasionally, one of these posts is gonna come up.

So my wonderful (and I mean that these days, because as weird/annoying/odd as she was when all the shit was going on, now she truly is wonderful) MIL wanted to go with her boyfriend, me and Johnny over to my parents so they could meet Ken (her BF) and she could see my mom, because they get along well.   We planned it for next weekend, the 25th.

So my mom calls me today and says she wants to do it in May.   I say, well, that's gonna be difficult because MIL and BF go to their lakehouse and I know they are going the first weekend in May, the next weekend is Mother's Day, the weekend after that we have stuff going on, etc...why do you want to wait till May?  She says because she wants to be outside.  Um....okay, it might be nice outside.  But the table is not out there.  I don't get it.   I tell her May won't work, and we'll probably have to wait till June.  Oh that's fine she says.  And then.

She starts crying.  For those of you who don't know, a symptom of ALS is the inability to control your emotions, which means crying/laughing for no reason.   Even though I know this, I can't help but feel like I made her start crying when she starts while talking to me.  And then she cries, and tries to speak, and forgive me for using this word, and she sounds retarded.  And I can't stand it.   So I tell her to stop crying, and she can't, so she says she'll call me back.

She does.  She says she's sorry, I say it's fine. She says we'll do it in June, I say fine.  Even though, to me, it's not fine.

And then I find out that other people are going over to her house to visit her next weekend.  That's okay?? They don't have to be outside?? WHAT THE FUCK.

My MIL doesn't have to go over there.   But she wants to.  And she has been an unbelievable support to me and I am pissed off that for some reason, other people can go see my mom and be inside or whatever the fuck but my MIL cannot.   And I am pissed and there is nothing I can do about it.  Just like there was nothing I can do about the fact that they showed up 90 minutes LATE for PJ's birthday party, and then proceeded to leave 90 minutes later.   I know things take longer nowadays, but you KNOW what time it starts. And they had the cake.

Sigh.  I'm so fucking tired of all of this.