Tuesdays With Tyler: Red Light

Posted on February 8, 2011 by

Although I’d like to pretend that life with Tyler is all smiles and sunshine, (wouldn’t we all with our kids?) we do go through some rough times with him.

In the last few months Tyler has developed a temper which I have definitely connected to lack of sleep.  Boy, is he moody in the morning.  “I don’t want to get dressed, you’re a bad mommy…”, and sometimes, he has even hit me.  When he does that he gets punished with something special to him taken away.  And usually he thinks about it and says, “You are a good mommy, and I do love you.”

He’s had some incidents at school as well.  It’s not like a bully thing where kids are scared of him, it’s more like “he’s gonna blow” as he tries to hold his temper in, and the kids in school aren’t scared of him.

Grant and I, along with his teachers are teaching him to see a “red light” and to take a breath before he acts out.  And the always popular, say it with me now…”Use your words”.

Last week Grant and I had our voices raised.  I say that because we don’t really yell, ever.  But as much as we try to keep any angst from Tyler, sometimes it’s hard not to argue in front of him.  And he is very sensitive to it, as most kids are.

Anyway, as we had our “voices raised” in front of him, he suddenly shouts out, “Mommy! Daddy!  Calm down!”  We looked at him.  “Seeee the red liiiight”, he continued. “Now breeeathe, breeeathe.”

We stopped, wordless, looked at him, and then started laughing.  How long can you be frustrated with a four-year-old boy who teaches us that we need to “Use our words better”?

Traffic_light_red

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A Letter to My Future Teenage Son

Posted on February 3, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt #4:  A Letter to Your Future Teen

Dear Tyler:

I know that this is going to be a hard letter to write and at the end I will probably be bawling my eyes out.

You are only four-years-old right now.  You call me Super Mommy and still need help in the bathroom.  You are funny, clever, and love to cuddle with me.  You do not want to leave my side.  You say that mommy and daddy are your best friends. You do have a bit of the devil in you, you get angry and we are still trying to get you to “Use your words”.  We punish you by taking the Bat Cave away that you got for Christmas.

I know as you grow, in some ways it will be easier for me as you become more independent. You won’t need anyone to pour your drinks for you, or to work the three remotes we have for our television, and you will pick out you own clothes and dress and bathe yourself.

But mostly, I know it will be harder as I allow (do I really have a choice?) you to spread your wings.  I am a bit frightened because I have no idea what it is like to be a teenaged boy, although I can imagine, having been on the receiving end.

I worry a lot about your health, physical and mental, coming from two sick parents. Will you hate us for any diseases we may give you?  Will you hate that we are disabled and cannot work, and that because of that you may have to work harder for the things you want?  Or will you love us for it?  Maybe not as a teenager, but maybe as an adult?

You’ve never known your daddy and I without the swallowing of lots of pills and the safe that I have where I lock up my narcotics.  Will this make you want to try drugs more or make you realize that drugs are only for sick people?

I’m not sure what your father is thinking but I plan on being honest with you.  I want to tell you my experiences with drinking, drugs and sex and how I feel about them when I look back. I am probably not going to change your mind, but at least you will know that those things all existed way back in the 20th century!  I want to tell you what being a teenaged girl was like so that hopefully you will respect your female peers.

While I know you will no longer be cuddling with me on the couch, I hope that sometimes you will hug and kiss me and won’t be too embarrassed by your old mom!

And finally Tyler, no matter what you will look like and who you are, I will always love you. Through the arguments we will no doubt have about curfews, the car, smoking and more, I will never stop loving you.

And, I just want to throw this out to you, honey, that the offer to be your best friend still stands.

Yep, I’m crying.

Love,

Mom

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Tuesdays With Tyler: Afternoon Out

Posted on February 1, 2011 by

On Saturday I felt well enough (finally!) to take Tyler to the mall for boots (finally!).  I didn’t think we’d be lucky enough to actually find boots this late in the season but I at least wanted to get his feet measured so I could find some online.

The sales associate looked at me like I was crazy but Tyler measured a size 13 and they had the boots!!!  With lots of sales and clearance prices too!  My little boy is only four and his feet are already a 12.5!

We also had a Winter coat to return that someone had given us for Christmas.  I held on to the credit, thinking God only knows what size Tyler will be wearing in the spring. He is the tallest kid in his pre-K class!  At least his feet match his height!

Before we left the mall, Tyler wanted to take a ride.  What used to cost 25 cents and was a horse when I was a little girl now cost $1.25 and are race cars and rocket ships with video screens.  What looks like nothing to me is a big ride for Tyler, and I remember loving it too!

Tyler really wanted to go out to lunch.  Because of our financial difficulties going out to lunch is a real treat for us both.  I decided to go to Whole Foods Market.  Oh, how I miss shopping there!  Although I never was able to afford all of my food shopping there.  I still salivate though. They’ve got healthy, interesting lunches and the prices aren’t too bad to eat out, actually.  Plus I know Tyler will eat their baked macaroni and cheese!  I got Mulligatawny Soup and a whole grain roll.

The place was packed and there wasn’t anywhere to eat except for the counter and that had high bar stools.  I helped Tyler climb up the stool, his head was almost level with the counter!

“We are so high up!” Tyler said. “It’s like we’re in an airplane.  Let’s pretend we are flying!”

I love how kids think!  So I did my best “Ahh, good morning passengers we are flying at an altitude of 20,000 feet…” imitation of an airline pilot.  I even shook his chair when there was some turbulence and when we landed.

Just when we were driving home, I remembered how upset I’d been about something that morning and how the whole afternoon with Tyler I didn’t even think of it once. I thanked Tyler for a nice day out and he asked when we could go to the mall and have lunch out again.

“Soon, I hope, honey.  I hope very soon.”

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Win Tickets To See The Very Hungry Caterpillar at the State Theatre in New Brunswick!

Posted on January 31, 2011 by

(I was given tickets to see the puppet show by the State Theatre)

President’s Day (February 21st) is Family Day at the State Theatre in New Brunswick, NJ!

If you are home with your little ones that day there are a lot of activities going on at The Crossroads Stage, The George Street Playhouse and the Herr’s Hub City Big Top. Activities include storytelling, making a butterfly mobile and a paper bag puppet workshop!  Some events are free, but many do have a fee and registration is required.

And…the State Theatre Stage presents “The Very Hungry Caterpillar and Other Eric Carle Favorites!” Children will be enchanted by the black-light puppetry featuring the caterpillar, Little Cloud, and The Mixed Up Chameleon.

Tickets for the show are:

Monday, February 21, 2011 at 10:30 AM

Monday, February 21, 2011 at 1:00 PM

Monday, February 21, 2011 at 3:30 PM

Contact the State Theatre to purchase tickets.

OR:

You can win them here!  I am giving away 2 (tw0) Family 4-packs of tickets for the 1:00 p.m. show.

Entering is easy!

1.  Just leave a comment below and 2.  Tweet out this post and let me know, in a SECOND entry.  This gives you two chances to win!  The contest will end at 11:59 p.m. EST on February 7th.  The two winners will be chosen by random.org. Good luck! (Please only enter if you can make the 1:00, 2/21 show.)

Congratulations to Aimee and Lauren for winning the tickets to see “The Very Hungry Caterpillar”!  Their numbers, #4 and #7, were chosen by random.org.

Thank you to all who entered.  Even if you didn’t win, there are a lot of great family events at low prices taking place on President’s Day so check out the Family Day activities The State Theatre is offering!


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I Always Feel Left Out

Posted on January 27, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 3.)  Describe a time when you felt left out.

When you suffer from chronic illness and pain, there are a lot of celebrations that either you can no longer attend, or, if you force yourself to, you will regret it, be miserable at the event, and maybe need up to a few days to recover to where you were before, which for me is “my usual level of crap”.

I am not left out by my family and friends who have chosen to believe that my illnesses are real and serious.  I am still invited to baby showers, weddings or birthday parties, but I choose to leave myself out because I just don’t feel well enough to attend.

A friend whom I have known since high school is having a 40th birthday party in a couple of weeks, starting at 6:30 at night.  A very reasonable hour, but if I don’t get a good nap, which is often the case, I usually go to bed between 8 and 9:00.  Going to the party would mean having to shower, dress up, do my hair and make-up, and accessorize. I would be exhausted before I even got there!

Do I have to do those things?  I guess I don’t and people would understand, but I would feel like a total schlub.  People who know me would know why I might look like that but the rest might think, “Emily used to be so attractive, what happened to her?”  Perhaps instead of a name-tag I could wear a tag saying, “I look like crap because I have Lupus, Chronic Fatigue…”, the name tag would take up a large part of my chest.

And so I mostly say no to invites.  I would just rather be home and comfortable rather than suffer the consequences.  The only things I do try to do is to take my son to birthday parties, play dates, a museum or zoo; or, once a summer, a trip to the beach or an amusement park. Those trips devastate me but I want my son to have some sort of a normal life.

If you are a person with chronic illness, you are nodding that you understand and probably are turning down a lot of invites yourself.

If you are a person who knows someone with chronic illness, I would ask that you do keep inviting them to your events.  Even though we might say no, being asked does make us feel like we are still in the loop of life.  Please don’t be angry if we have said yes and need to cancel at the last minute. And who knows, we might surprise you and actually show up!

RSVP by Wedding Paper Divas.

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When Kids Attack!

Posted on January 25, 2011 by

Tyler is a rough and tumble, energetic, typical four-year-old boy.  It seems like he is always running around or jumping up and down.  Sometimes, by accident he will run into me, or he will spontaneously decide to jump on me affectionately; maybe hurting my arm, shoulder or chest.

In the chronically ill mom, this can be quite painful.  Especially with my Fibromyalgia, one bump into my arm could start my WHOLE body hurting.

Grant and I keep trying to work with Tyler on this.  We tell him that he cannot jump on Mommy whenever he wants to.  I don’t really like to emphasize my illnesses, so we tell him that he cannot just jump on any girl or woman, that we are more delicate than boys or men. (Feminists, give me a break, what else would you have me say?)

I know as he gets older, he will get calmer and watching out for Mommy will come naturally. In the meantime I am willing to take the pain in exchange for the cuddles and kisses, while I still can!

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Review and Contest For The Swan Thieves

Posted on January 24, 2011 by

I read  The Swan Thieves as a member of the From Left to Write book club.  I was given a free copy as part of the book club but this review is totally my own opinion.

The Swan Thieves, by Elizabeth Kostova, is the story of a famous painter, Robert Oliver, who attacks a painting in the National Gallery of Art and is put into a psychiatric ward. When Robert maintains a state of silence, his psychiatrist, Andrew Marlow, must investigate the artist’s world in order to treat him, which includes the women in Robert’s life.

If you are at all a lover of art and a study of the human psyche, this is a book for you. Elizabeth Kostova is one of those authors where you think to yourself, “Why can’t I write like this?  How could I ever describe something as well as this?”  I am not a reader who likes to scan books’ descriptions on the back or jacket flap.  This book to me seemed so real, the people so lifelike, I actually looked up Robert Oliver’s name to see if he was a real person.

The 550 page long book scared me a bit, but I read through it without any problem. Perhaps if I were not a mom I would describe this as a “book that you cannot put down!”

This is Kostova’s second novel, the first being The Historian. Many who have read both have found this book to be too long and her debut novel to be the better of the two, but I have not read it.  If people are saying her first book was better, then I definitely want to pick it up!

One caution you may want to be aware of is that the book does go into quite a bit of mental illnesses and behaviors.  I have to admit that in the beginning, due to my background and life, it was difficult to read and I wondered if I could keep on reading it.  So if you are one who may find such plots to be triggering, the book may not be for you.

I found The Swan Thieves to be an excellent read, something perfect when you are trapped indoors on these cold and snowy days.

Would you like to win this book that has never been read in the bathroom? Entering is easy!

1.  Just leave a comment below and 2.  Tweet out this post and let me know, in a SECOND entry.  This gives you two chances to win!  The contest will end at 11:59 p.m. EST on January 31st.  A winner will be chosen by random.org.  Good luck!

Congratulations to Tendai, whose entry, #6, was chosen by random.org! Thanks to all who entered!

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A Letter For The International Day of Acceptance

Posted on January 20, 2011 by

To my followers, my friends,

Today is The International Day of Acceptance, a day to start conversations, make new friends and educate people about anyone who is disabled; be it someone like myself who has Lupus and often can not walk or stand, someone who is mentally retarded, or someone who is a paraplegic.

As a blogger my mission statement for my blog has always been two-fold: 1) to let chronically ill parents know that they are not alone and 2) to blog about being a parent in general, or life in general, and attract well people to my blog in order to for them to realize that sick people and well people are not so far apart.

In my personal opinion, I feel that we as disabled bloggers need to reach out to those who are healthy.  To break down the barriers between us, to clear up the misconceptions about the chronically ill, and in general educate people about the challenges we face.

I try to write for other larger blogs, not just about my illness, but about a funny thing that my child said to me, or that my library is stalking me for a book I have overdue, or even about racial or religious slurs.  I try to get my writing on larger sites in hopes of people reading my post there, then coming over to my blog, and learning that “Emily has Lupus, but she is a lot like me.”

It is by gaining the acceptance of healthy people that our collective voice will grow larger and then they will advocate for us too, because we are people that deserve the same rights as everyone.

I usually describe myself in three words in order of importance: Mother, Wife, Sick but today, on The International Day of Acceptance, I will put a fourth word in front of them all:

PERSON

I am a person, just like you.

Most sincerely,

Emily Cullen

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Tuesdays With Tyler: “What’s That Smell?”

Posted on January 18, 2011 by

Okay, I admit it, the title was meant to draw you in.  (It’s my blog and I can call my posts what I want to!)

The above though is true.  But it was said to me by Tyler, in response to what I thought were lovely smelling heating pads.  Well, they weren’t lovely to him, as he wrinkled up his nose and backed away from me.

It made me sad because I felt the accoutrements of my chronic illness made Tyler not want to be with me.  Cuddling is what us chronic moms do best, but not if something we are wearing or are attached to scares our kids, looks weird to them, or, like me, even smells funny to them.

Does your CPAP machine, braces or a nurse coming to your home to give you an I.V. medication scare your child or turn them off to you?

There is hope though!  I still kept on using my heating pads up to three times a day.

One night Tyler came into my room and sniffed.  “Is that your heating pad?”

“Yes,” I said.

“I guess it doesn’t smell too bad any more”, he said, as he crawled into my bed, and allowed me to read to him.

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January 20th is The International Day of Acceptance

Posted on January 17, 2011 by

I am letting you know about The International Day of Acceptance early in case people would like to blog or tweet about it.  I will also blog about it on that day.

As people with disabilities we have rights, opinions, interests and lives.  We can make a difference in the world and have a voice.

If you are a family member or friend with someone in your life who is disabled, you can help too by telling the world that you accept us, and you can make an impact in our lives by demonstrating your acceptance to others.  You can write, blog or tweet about your loved one too, talk about misconceptions about disabled people and the challenges that we face.

I really love this website’s attitude.  Some of their slogans are:

Wheelchairs are sexy!

I don’t live disabled.  I live.

Love Life.

I hope you can join me.  Participation in any small way will make a difference.

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