Tuesdays With Tyler: A Mother’s Agony, A Son’s Anguish

On Thursday I came clean about what was going on with my son.  It wasn’t really a matter of “coming clean” as it was the right time to write about it.

Tyler no longer sleeps in bed with me but occasionally he will spend a night.  Now that it doesn’t happen every night I can enjoy it more and treasure the fact that some day he will not even want to live in this house!

We had turned out all the lights.  Usually if I can get Tyler into his “sleepy position” he will go out like a light.  He was still playing in the dark.  I had just gotten a Hello Kitty from the Build-A-Bear Workshop for my birthday. “Mommy, I think you are going to be mad at me.”  “Why, honey?”  “I was playing with Hello Kitty and by accident her slipper came off.”

“That’s no big deal”, I said, turning on the light to fix Hello Kitty’s slipper.  “I would never be mad at you over something you did by accident. Now, let’s go to sleep.”  “Is Hello Kitty mad at me?”  “Oh, no I’m not mad at you”, I said, in my best Hello Kitty voice.

A few minutes later we were laying in the dark and he asked, “Mommy, if I kicked you in the stomach and punched you in the eye, would you still love me?”

I think God or perhaps my dad in Heaven was guiding me as a parent because I came up with the quickest and best answer I could.

“Honey, I wouldn’t want you to do those things, and I might get mad at you if you did that, but, I would still love you.  You are my son and there is nothing you could do that would make me stop loving you.  I love you more than anyone else in the world, and I always will, no matter what.”

I hugged and kissed him.

There’s not too much more to write about after you write something like that.  Tyler knows that the feelings of aggression he has towards me are wrong, horrifyingly wrong, but he still has them.

Knowing that my son has that self-awareness, that he lives with this pain…it is almost too much for me to bear.

Except that I will bear it, because he is MY SON and I WILL always love him.

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Review and Contest For “Lost Edens”

(I read Lost Edens as a member of the From Left to Write book club.  I was given a free copy of this book.  The opinions, however, are my own.  If you would like to read the post that I was inspired to write after reading this book, you can go here.)

Lost Edens by Jamie Patterson is the true story of a woman in her mid-20s who decides to take her husband back after he admits to having an affair.  She does this without the support of any of her family or friends, there is not one person behind her, but Jamie is determined to make it work.

To tell you that the marriage does not work out is not spoiling it for you as it says right on the back cover, “(Jamie) lives in Minneapolis with her dog, Huey.”  But it is the middle of the book, the journey that Jamie takes from deciding to take her husband back to running like Hell that is the real story.

Lost Edens reads like a novel except for the very sad and terrifying fact that this book is not “based on a true story” but that it is a true story.  To watch Jamie go from determined young wife to how she leaves her husband is a study of a woman growing up and a study of a woman having to admit that she MUST leave.

For those who may be sensitive, there is abuse and mental illness in this book, and for those not recovered from their own personal experiences, this may not be the right book for you.

At 210 pages Lost Edens is the perfect memoir of a woman facing betrayal, innocence and finally, self-awareness.  It is the perfect book for curling up on a cold day and reading it in one sitting from cover to cover.

Would you like to win a gently used copy of Lost Edens?  

 Entering is easy and you have three chances to win:

1. Leave a comment below.

2. Tweet out the contest.

3. Post this contest on your Facebook wall.  

If you tweet and Facebook the contest, please let me know by leaving two more entries.  In other words, if you have commented, Tweeted and Facebooked, you will have THREE separate entries.  

The contest will end on Monday, November 14th at 11:59 p.m. EST.  A winner will be chosen at random. Good luck!

Congratulations to Deana, winner of Lost Edens.  Deana’s entry, #3 was chosen by random.org.  Thank you to all who entered and keep checking in because I hope to have some holiday contests coming up soon!   

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What You Don’t Know About My Son…

Inspired by Mama Kat’s Writer’s Workshop.

Prompt # 3:  Write a post that is eight lines long. (inspired by Mommy Nani Boo Boo)

 

1. That ever since he started kindergarten things have been a disaster.

2. That he is seeing a psychologist because of the things he does.

3. That twice he has beaten me up, once to the point of me thinking I might need to see a doctor.

4. That he threatens children at school and my husband and I.

5. That he curses at my husband and I.

6. “I’m going to punch you in the fucking stomach if you make me go back to bed!”

7. Did I notice my son stutters and that he may have some symptoms of Ataxia?

 

8. That I am scared to death for him.

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Tickets Now Open to the Public For the SmartTalk Women’s Series!

(I am working with SmartTalk in exchange for the opportunity to see these speakers at no cost to me, and for promotional opportunities for my blog.  I am not being monetarily compensated.)

Tickets are now available to the general public for the 2012 tour of SmartTalk Connected Conversations!

The series of five speakers at five different shows will be coming to the cities of Cincinnati, DesMoines, New Brunswick, NJ, Tampa Bay, the Twin Cities, and Wilmington, DE.; and the speakers include Arianna Huffington, Andie McDowell, Dr. Jane Goodall, Marie Osmond, and Sigourney Weaver.

SmartTalk believes that women can be inspired by the heart and voice of other remarkable women with the hope that the end results leave women thinking of, participating in and experiencing the most connected conversations of their lives!

Ticket Information for the cities are as follows:

The Cincinnati Arts Center

The Civic Center of Greater Des Moines 

The State Theatre of New Brunswick (My neck of the woods!)

Minneapolis:  the Hennepin Theatre

Wilmington, DE: The DuPont Theatre

Tampa Bay:  (Please contact The SmartTalk Women ticket site for more information)

Best of all, Mama Sick readers will have an opportunity to win tickets to one of the events!  I will be sure to keep you posted on when that takes place!  But if you are looking for something special to take your mom, daughter or a friend to, make sure you take a look at the SmartTalk Women’s Series!

 

 

 

 

 

 

 

 

 

 

 

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Tuesdays With Tyler: Halloween!

For the first time ever, I’d be willing to bet, school was closed on Halloween.  Due to the storm, some schools still didn’t have power and roads were still closed.  I’d also bet that it was the first time the school’s Halloween parade was cancelled on account of the snow!

Because of the sidewalk conditions, Grant and I decided to take Tyler trick or treating at a really nice mall about 35 minutes from us.  It was the best decision I have ever made about what to do about the problem of Halloween.  I can’t walk from house to house, so I used to drive alongside Grant and Tyler while they trick or treated.  Going to the mall, we got a wheelchair, and I was able to take part in everything!  I highly recommend this option if you are unable to walk any kind of distance.

If you’ve been keeping up with us, your memory is correct.  This is the THIRD year in a row that Tyler has gone as Spider-Man for Halloween!

Working out for Tyler to get into his Spider-Man costume has obviously paid off. Check out those muscles!

 

Weary of trick or treating, Tyler blew off some steam at a cute little indoor play park, free of charge that he is almost too big for.

I had to bribe Tyler that if he went to the play park he would have to take a picture with Mommy. Whatever it takes!

 

Even Superheroes Have to Eat

 

Luckily Tyler is a reasonable Trick or Treater and he didn’t want to stay at the mall more than a couple of hours. He got plenty of candy anyway!

Grant and Tyler examining the "loot"!

 

You can’t miss what you’ve never experienced, so Tyler really didn’t care that he missed the big Halloween parade at school.  He was happy with all the candy he got.  Now if I can only stay away from eating it…

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My Birthday: Good times!

Thanks to God and my friends’ and familys’ wishes for me to have a good day, I managed to have a nice, low pain birthday!

October 29th will go down in history as a record snowstorm.  Neither my mother nor I could ever remember it snowing on my birthday.  States of emergency have been declared in New Jersey (my neck of the woods), Connecticut and Massachusetts.

I am not one for taking pictures of the snow but on my birthday I had to!

Trees with leaves still on them collapsing under the weight of the snow.

 

Downed tree right next to my house, blocking traffic. I'll miss that tree!

 

Plans for the day changed drastically as soon as we went outside and were faced with ice and snow pelting us. The lovely lunch we had planned for my birthday was scrapped and we were lucky enough to make it to IHOP (International House of Pancakes for all of you non-Americans).  IHOP is not the worst place to have your birthday!  I had maple coffee and pumpkin pancakes with pecans and caramel sauce.  Hey, it’s my birthday and if not your birthday, when else can you go nuts?

After that we made our scary snow covered way to the grocery store and pharmacy to pick up medicine and groceries to hunker down for the rest of the storm.  When we got out of the store, the power had gone out and most of the lights on the road were out of power, forcing us to keep driving until we could make a turn to get back on the highway the other way towards home.  I was praying we were going to have power; 600,000 homes were without power.

I got my birthday wish, we had power and it was nice and warm!  Then we opened presents.

Tyler and I with our matching Perry the Platypus(es, i?). There was no way I was going to get one without Tyler getting one!

 

I finally got a piece of Melody Ross's art of The Brave Girls Club Blog! Love her and the blog!

 

We celebrated getting Perry the Platypus by watching an episode of Phineas and Ferb and then it was time for my birthday nap, one of the best gifts I got!

Even though I was really down in my last post, I feel like the universe came together and managed to give me a fun, as low pain as possible, unique birthday! Thank you again for all your good wishes and hopes that my birthday would be a good day!

 

 

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Another Birthday…At Least I’m Still Here??

Today is my birthday and it just happens that it looks like we are going to set a record in NJ for we are expecting up to three inches of snow, which never happens here and is never happened on my birthday, and I should know.

Today I am 42, and it’s not the age I turned, and I don’t hate or dread that number, it’s just that once again, I am so sick and in so much pain on this day.  I have the unfortunate luck of having been born in the season of Autumn.  For me and so many others like me, Fall is always my worst season and I dread it even more than Winter.  My body doesn’t like the sweeping temperatures, going from 35 degrees to 65 degrees, the really hot days with the sudden cool days.  If I am not flaring already, I start to, if I am in a flare it only gets worse.

Through the past years I could look back on Halloween or my birthday and remember that I would be having such a good time…if I wasn’t in for the pain.  For several years my township would have this Haunted Forest, before they became afraid of lawsuits, I guess, and shut it down.  It was one of the coolest Halloween things I had ever seen, it was put on by the local high school kids and was different every time.  I have an image of going to it on my birthday with Grant despite having a Costochondritis flare, before Tyler was born.  I wanted to go anyway despite being sick, I loved it so much.  But now when I remember it, I remember standing in line in the cold and it hurting so much to breathe.  That is my main memory of the event.

Last week, due to gaining so much weight because of the as yet undiagnosed hormonal issue, I had to go shopping for pants and shoes because nothing fits any more.  I went to DSW Shoes and I told one of the associates about how swollen my feet were and how I needed a sneaker with ankle support because sometimes I cannot walk, and she was very helpful in giving me advice about the type of shoe I needed.  To my surprise and dismay I fit into a size 11!  Last year I was a size 9.5 and before all of this started I was a size 9. I had known my feet were swollen, I had worn flip flops all summer, but not to this extent.  I was kind of shocked as I had first tried on a size 10 and moved my way up.  I was walking around with my size 11 sneakers and the woman came over to me.  “Are they comfortable?”  I told her yes but what I really wanted to say is, “You know what, my feet are NEVER comfortable, even when they are bare, they hurt every single second of my life!”  The size 11 was as good as it would ever get.  I also picked up a shoe which I was a size 10 in.  Other than these two pairs of shoes, I don’t have another shoe in my closet that fits.

On Thursday I went to the Rheumatologist because the drug that I have been taking for three years to keep the Lupus/Rheumatoid Arthritis in check is making me sick.  So now I am flaring and have no medication to take for it.  The doctor wanted to run all the blood tests for Lupus to see where I was in order to figure out the possibilities to treat me.  He examined my very swollen fingers and wrists and we talked about my visits to the endocrinologist’s and how frustrated I was at being undiagnosed.

“With everything you have, the longer you live, unfortunately it is common that you will receive more and more diagnoses.”  That it was just the way it is.

“I don’t mean to minimize what you have but at least you are still here, you know?”

That’s it?  All you have to tell me is that at least I’m still HERE?

I told him, “I know I am still here, but I am miserable every day of my LIFE.”  “I know you are”, he said, sympathetically.

I know people have it worse, that right now people with Lupus are in the hospital fighting for their lives.  I know people have died from some of the diseases I have, someone I know just died this month.  But is that the best I can say about my life, that at least I am still here??

I don’t want to be grateful that I am still here, I am tired of being grateful that I am still here. Being here is not what it is cracked up to be.  As I go into my 43rd year I am facing another year of constant pain, and another long journey to find out what is wrong with me now.  

Is it too much to ask and hope for that there should be more to my life than that I am just here?  For once, I would like to have something that resembles a normal life.  A day without pain, may I dare say a week?

On my birthday, is it wrong to not be grateful that I have made it to the ripe old age of 42?  

On my birthday, is it wrong to wish for life to be more than just existing?  

On my birthday, today I am so goddamned tired of being grateful that I am just still here.

 

Photo courtesy of 5 Minutes For Mom

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Vacation Lost

Due to Grant getting his disability and us now having a small nest egg, we decided to do something with Tyler we had never done…take him on a vacation.  It was going to be a mini-vacation to Hershey Park’s “Halloween in the Dark” in Pennsylvania.  We were supposed to go last weekend, but things were so crazy last week…we were preparing for bankruptcy (that’s for a later post) and I had just gotten bad/confusing medical news.  Grant said why not put it for to next weekend, Halloween weekend?  I was disappointed for Tyler’s sake, but made the reservations for this weekend instead.

This week, Grant threw out his back.  His asthma or a cold started to kick in as the temperatures dropped.  Fall is my worst time of the year and my joint pain and swelling, especially in my hands and wrists, started to increase to the point where my meds are no longer helping the pain like they should and it is hard trying getting to sleep, much less live. And tomorrow, which was to be our main day at the park, they are predicting snow showers, which never happens by me, at least not that I could remember.

I was telling Grant to go to the doctor to get some pain meds for his back.  I felt like complete shit but I didn’t care, I was literally obsessed that we should go on this vacation for Tyler.  I knew I would probably have a horrible time but I didn’t care, I wanted to do it for him.  Grant was practically shaking me.  “You are acting CRAZY about this vacation!  You are SO sick, I’m sick.  We are going to have a shitty time, Emily, you have to cancel this vacation!”

And so I finally admitted defeat and I cancelled our vacation, for good.  This is the last weekend that Hershey Park is open and it is already winter coat time here.  There will be no going anywhere for us until this Spring, and that’s if we could even afford it by then.  Grant really wants to see his parents and I want to see my relatives, perhaps over the Christmas break but that is no vacation for Tyler.

Around where we live, Tyler is about the only kid who has never gone on a vacation.  When he was four years old, Tyler asked me what a vacation was.  When we got Grant’s back pay for his disability I thought, “Finally we could afford to take him somewhere!”  Even if it was just a mini-vacation.

I know Tyler is not the only kid in America who is five years old who has never gone on a vacation.  Part of it is that when I was Tyler’s age I had already been on a vacation every year.

And a big part of it was that I am simply too sick to take Tyler anywhere.  

And in my heart I wonder…Will I ever be well enough to take my child on vacation?

 

Illustration for John Milton's Paradise Lost

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Scared the Hell Out of Me

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 3) Something that scared the Hell out of you when you were a child.

I guess this is the one I am choosing since this was an idea for a prompt that I had sent Mama Kat.  Yay and thanks, Mama Kat!  She chose it due to it’s Halloween-like theme but when I sent it to her that was not what I was thinking about.  I was thinking about something that I saw as a child that was completely different and completely real.

I was in 5th grade, it was Spring of 1980 and our whole school was presented with an assembly.  It was done by one man and he spoke about drugs.  When I say speak, I don’t mean he just gave a little talk.  I mean he did a presentation with slides.  The slides were so graphic, the one that stands out in my mind the most was a person’s arm that was infected because he had shot heroin so many times.  I had never even heard of heroin…or cocaine or any drug that he talked about.  I lived in the New Jersey suburbs in an excellent school district.  Everything he said was completely foreign to me, not like it is to kids today.  When I was younger I used to picture drugs looking like chocolate.  I knew that they tasted good but that they were very, very bad for you.  “Drugs” was the only word I really knew.

I saw an assembly, more than one, about how you shouldn’t drink alcohol.  I still drank alcohol.  I have never done an illegal drug in my life, including marijuana.

The man spoke with such feeling, the slides were so terrifying.  And in the end he told us why he had made it his life’s work to go around to schools to talk to kids about drugs…his younger sister had died from a heroin overdose.

There was complete silence in the auditorium.  I would never see another presentation like this again.

This man and his story affected ten year old me so much, for months.  I would have nightmares.  I became depressed.  I became paranoid.  One of the signs of being a heroin addict the man had said was if people wore long sleeves on a warm day.  I would see a girl with long sleeves on as the weather got warmer and wondered if my fellow ten year old classmate was on heroin.  I kept having visions of my father pulling up his sleeve and showing me his arm, all infected because he was doing heroin.

It got so bad that my parents considered taking me to a child psychologist, I was THAT freaked out.

And finally, finally, it got better.  The nightmares and thoughts stopped.

I don’t know how many kids around the country saw this man, but I am sure he was a large part of why I never tried any drugs.  I wonder if he saved any other kids.

I don’t know if they have assemblies like this any more.  I imagine that parents and teachers today would view the presentation and it’s slides as way too graphic.  I imagine that if I got that scared as a kid today, that my parents would have complained like Hell over what the school had showed children as young as nine and perhaps they would have made the school pay for any therapy I might have needed.  Maybe the media would have been called.

As horrific as that assembly was, as scarred as I was by it, I wish that when my son got older he could see an assembly like that.

I am willing to take the risk of scaring the Hell out of him.

Referential Website:  Educating your children about the dangers of heroin addiction is one great way of making sure they won’t ever need to sign up for heroin addiction treatment programs  later in their lives.

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Why I Stay

(I read Lost Edens as a member of the From Left to Write book club.  I was given a free copy of this book.  This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs. My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

Lost Edens by Jamie Patterson is the true story of a woman who decides to take her husband back after he admits to having an affair.  She does this without the support of any of her family or friends, there is not one person behind her, but Jamie is determined to make it work.  Throughout the book there is evidence of her husband having some serious mental illnesses.  And that’s all I am going to say because I don’t want to ruin how this amazing book turns out.

I am married to someone with severe mental illness, so severe that he receives disability as he is no longer able to work.  If you don’t know much about the Social Security Disability process, you pretty much need to be near death or severely mentally ill to be able to get disability on a first time application.  My husband was a “yes”, on his first try.

Grant has had mental illness since he was a teenager.  He spent his teenage years (in the mid ’80s) suffering until he was diagnosed with bipolar disorder.  In college he drank and abused prescription drugs and marijuana in an effort to self-medicate.  He got the most help when the ground-breaking drug Prozac and others that would follow became available to the mentally ill population.

When we met he was pretty well balanced, mental health wise.  The drugs were working for him.  Ours was a long distance relationship for a year when we decided that he would move to New Jersey from Ohio and move in with me.  I was 31 and I knew this was something special.  Grant was loving, generous, sensitive.  I had never met another man like him and I felt truly loved and respected.

We married in 2002.  Grant had a good job working for an insurance company that was free or at low cost for poor families. Unfortunately he happened to have the boss from Hell, and it wasn’t just him who thought so.  Part of what I loved about him was his sensitivity but it did not serve him well when it came to this woman.  Eventually, despite asking for an accommodation, they were not able to work things out and it was a mutual decision that Grant leave his job.

In his next job he worked as a Consumer Advocate, helping parents of disabled children get the services they deserved in the public school system.  Grant has never had a job that did not benefit mankind, something I really admired and envied, as while I liked my job, I often felt unfulfilled.  What was I doing to benefit humanity?

Unfortunately, after a couple of years, Grant began having difficulty there too.  He had trouble getting out of bed to face the day.  He had trouble getting through the day, and due to his OCD he was unable to keep up with the huge amounts of paperwork that the job required.  He had never asked for an accommodation and was fired in May of 2007.  He has not worked since.

When our son was born in 2006…I don’t want to blame him because Grant and I don’t regret having Tyler for one second.  Having a child, being a first time parent is hard for anyone, but for Grant it was like difficult times ten and throughout Tyler’s life I have been watching Grant sink deeper and deeper into his illnesses.

Grant is now to the point where he spends a good deal of the day just sleeping, having to medicate himself (under doctors’ watchful eyes) because life is sometimes too painful. The stress of me being chronically ill and collecting diagnoses along with our son having Tourette’s Syndrome, OCD, Anxiety and probably more doesn’t help.  Again, any husband or father would struggle having a sick wife and a child with emotional problems but for Grant it is times ten.

It’s no surprise that Grant’s mental illness has put a strain on our marriage.  Sometimes his mental illnesses make him say things that he doesn’t mean.  He will come up to me and say, “I want a divorce” or “I can’t do this any more, I need to leave, I need to go away”, only within the hour to come back to me and say he didn’t mean it and he loves me and is sorry.

It has been hard on me but I have learned to harden my heart and, as difficult as it sounds, take these kinds of things he says with a grain of salt.  Of course these conversations are not without damage to me, I would have to be soulless to say they aren’t.

I once called his therapist, crying because I couldn’t take it any more, I just couldn’t keep going on this roller coaster!  His therapist told me, “Emily, Grant adores you!  He loves you and does not want to leave you and Tyler. It is just his mental illness talking, he does not mean it!”

But as I said, these conversations do do damage to my heart and soul.

So, why do I stay? 

Because Grant is doing the very best he can.  He takes his meds, he sees his psychiatrist, he sees his therapist. He doesn’t stop trying every day.

I stay because of the love and support he has given me.  Me, with my over a dozen diagnoses and counting.  I cannot tell you how many men leave their wives when they become chronically ill, how many men cheat on their sick wives.  Grant is my biggest cheerleader.  He is my best friend.

I stay because, although he is not a perfect one, he IS a good father and tries every day to keep being a better one.  He cares almost too much about Tyler and agonizes over trying to do right by his son.  Meanwhile, Tyler thinks that Grant is the best daddy, the funniest daddy in the whole world.  Tyler doesn’t care that Grant is mentally ill, he still thinks his daddy hung the moon.

I stay because I took marriage vows.  For better or for worse, for richer or poorer, in sickness and in health.

And the number one reason why I stay?

Because no matter how the mental illnesses are destroying him, Grant is still the most loving, generous and sensitive person I have ever met.  

That person I fell in love with is STILL there.

 

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