Resentment: What Ive Feared the Most is Already Happening

Posted on June 25, 2011 by

(Laptop update, yep, I am still using hubby’s.  I finally dragged myself back to the store where I had to leave my laptop again with them.  I hope they will take good care of her.  They told me she would be ready in 24 hours, fingers crossed.  What happened there and this afternoon is a post for another day. If you are new to my blog or catching up, Grants laptop has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

(Also, for whatever reason, my formatting in this post is a mess.  I have emailed a friend to help me fix it, but I beg you, please stick with it, or at least come back later when it is fixed.  I really wanted to put this up and if you read on you will see why.  Thank you.)

Lately I have been feeling what I usually refer to as Less Than My Usual Level of Crap as I honestly never can say I am having a good day. Theres either Crap or Less Than Crap.  First off, I have had some stubborn bug bites that despite treatments of antibiotic, anti-itch creams and bandages, have refused to heal for a couple of weeks now and they look so bad that I have made an appointment to get them checked out by my Primary Physician on Monday.  And they happen to be on a very embarrassing spot on my body, my, uh, tush.  As I do spend a good part of the day bed-bound, be it from being unwell or just plain being on the computer half the day, the paranoia in me is fearing bed sores, of course.  But when you have Lupus, it can make your body do some whacked-out things with something as simple as a bug bite.

To add to that, for the past two days I have been having some sort of low-grade infection, coughing up stuff, having a sore throat and a low-grade fever. More achy than usual and feeling hung over when I awake, or more hung over, I should say.

I have been wanting to put up a post and pictures of Tyler’s wonderful graduation but have just been feeling too sick and now so gloomy, post-ceremony and post-celebration, to do the occasion justice.

As I had written above, today was an interesting day with a lot of meaningful ups and downs worth a post of its own. Tyler and I had been out and about doing chores.  School ended the day he graduated, Wednesday; camp will start on Monday.  Again, a post worth all its own.

When I came home I collapsed into bed, around 4:00, and had set my alarm for 6:00 p.m.  Tyler knocked on my door at around 5:30.  Mommy, wake up! I got up, I had to go to the bathroom anyway.  I felt like I hadn’t slept in days.  Honey, let Mommy sleep for another half an hour.  She will get up when this television show is over.

When the alarm rang, I got up for good.  I felt so awful.  Freezing from the fever, in pain, shaky and exhausted.  What I didn’t know and realized only now was that Grant had fallen asleep too.  Usually we make it a point to have one of us up with Tyler, like in shifts, and if this ever happens, we have instructed Tyler to wake Daddy up, to even jump on him if he needs to, but for some reason he didn’t wake Grant up.  He wanted ME and he was hopping mad that I had slept for two hours.

Tyler started asking me for stuff, to play, to watch t.v., to get him a snack, even though I would be making dinner soon. He was yelling.  I told him the first thing I needed to do was to make myself a cup of coffee.  I needed to rest on the couch for like 15 to 20 minutes and then I told him I would be making dinner.  Please do not think that we do not feed the child, he gets plenty of meals and snacks.

I started making the coffee.  I was feeling so awful, the worst in a long time.  I was feeling guilty too, even though Tyler and I had had a nice day together.

Mommy, I hate you!

Normally I don’t let what Tyler says bother me, but I was feeling so vulnerable.  I hated me too.

I don’t want to live with you any more!  I want to be with Marks parents!

Oh you do, do you? I started to shake and I felt tears forming.

I don’t like you!

For the first time ever, I lost it, with my child, my four-and-a-half-year-old child, who can go from I Hate You to Youre The Best Mommy In The World in a matter of 60 seconds.  Whose mind changes like the wind.  I started to cry. Probably the worst thing you could let your child see you do, probably damaging him forever.  He had the power, he had to have been scared to see me crack.  But he kept on.

Dont talk to me!  I don’t want to talk to you any more!

At this point this physically, mentally ill mom, who is always in pain started to really cry.  And then Tyler realized what he had done. The Child had become the Adult and realized how much he had hurt his mother.  He started to calm down but still wasnt exactly ready to admit that he was wrong.

I don’t like you, but I still love you.

And then the Sick Mommy began to turn back into Adult Mommy.  That’s okay.  You know how we always talk about how a lot of times you can not like what the person is doing , but you still love them anyway?  Like I might get mad at something you did, but I will always love you.

We hugged.  And a few minutes later Tyler became the Good Child and said, I’m sorry mommy, I love you.

I love you too, honey.

And we both felt better.

The end.  Or lamentably, just the beginning.  The beginning of a lot of arguments where Tyler will blame me for screwing up his whole life; for not being able to take him to Disney World, for not being able to buy him his own computer.  For being embarrassed to have friends over.  For having to work while his friends are out having a good time.  For not being able to help him buy a car. For being so poor.   All will be blamed on my illness which had led me to become so poor.

But starting at just four-and-a-half-years-old?  I knew it was coming, I just didn’t know it would happen so soon.  And now I wait…for the next time.

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Tuesdays With Tyler: On the Eve of My Sons Graduation

Posted on June 22, 2011 by

(After having just a precious 2 days with my beloved laptop, there is a problem with the new hard drive they put in, so once again, I must bring it in to the shop.  Things have been so crazy, yeah its crazy being poor and sick!, I have had to reschedule twice; Im thinking Friday now. Anyway, I am writing this post on my husbands laptop.  His has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

How time flies.  I would never believe that it would be the night before my sons graduation…from pre-school. If you have never had any children you are probably laughing your head off right now, if you do have kids you are nodding and smiling, either of the memories or of the anticipation. I remember being childless and thinking these pre-school or kindergarten graduations were utterly ridiculous!  And yet now presents are coming in through the mail, and guests are coming to see my four-and-a-half-year-old perform a program in song and in sign language for his graduation in his cap and gown.

Tyler has certainly put in his time. He has been in daycare or school since he was seven-and-a-half-months old.  When I got too sick to work, when Tyler was a year-and-a-half-old, I kept him in daycare, as I was too sick to care for him as well. Through these four years, I struggled mightily with the guilt I had.  A woman staying home full-time, not working at all, and having her child in daycare full-time?  It just wasnt right, what was she doing all day? How could she do this to her child?  But I just couldnt take care of Tyler, could not entertain him, could not teach him things, could not even take him to the park.  I needed my days, to rest and sleep, to be in pain, to scream, to cry, to shake in my bed, frozen, when my Anxiety wouldnt let me leave it.

Most days Grant would take him to and from school but on the days when I would drop Tyler off, especially in the earlier years, I would run out of there crying, wondering if I was doing the right thing and feeling like a total waste of space.  I was a stay at home…what?  A sick person?

I finally came to terms with it, reasoning that if I was working full-time, Tyler would be in full-time daycare anyway.  And I hope through this blog that I helped other women come to terms with it as well, helping them through the feeling that they were failing their children, surrendering them to some other woman who might catch their childs first step or first pee pee in the potty, or the first time they wrote their name.  Helping them to realize, along with my own realization, that yes, they were turning them over to someone else, but that they needed that time, because just like any working mother, they were still going to be the ones responsible for bathing them, feeding them, changing them and more, and while the well moms worked, the sick moms slept, so we could be the moms our children needed us to be. Or, as I tell Tyler, Mommy needs to nap so she can wake up and be Super Mommy again.

But tomorrow Tyler will graduate from his school, never to set foot in there again and he will start his first real Summer vacation, with some camps here and there but mostly home.  And in September he will start big boy school, kindergarten.

And over the summer he will forget his teachers, has already forgotten the ones from when he was nine months old, and a year-and-a-half, and two.  And in the end there will be only one woman he will remember, the woman who got him ready for school every day and made him dinner every night and put him to bed with stories and games and talking.  The woman he kissed good morning to and the last woman he would say Sweet Dreams to.

In the end, there will only be…Mommy.

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Sweating Stuff Big and Small

Posted on June 18, 2011 by

(After having just a precious 2 days with my beloved laptop, there is a problem with the new hard drive they put in, so once again, I must bring it to the shop this weekend, yeah, Happy Fathers Day to you too. !  I am writing this post on my husbands laptop.  His has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

You know the saying, Dont Sweat the Small Stuff?  Well when you are dealing with large scale catastrophic things nearly ever day, the Small Stuff becomes unrecognizable.  I was taking Tyler to school yesterday when I saw that my car had been scraped and dented.  A weird school bus yellow paint covered the whole drivers side.  I kept asking Tyler if I was scaring him because I couldnt stop being upset, trying not to cry and trying to curb the language.

I called Grant and he said not to worry, just to be careful driving, and come home so he could take a look. Thoughts kept running through my mind such as driving around my neighborhood looking for a yellow car, calling the police and taking pictures of the damage as soon as I got home.

When I pulled up, Grant came out and he said, Im sorry, I did that last night.

You WHAT?  What happened?  How come you didnt tell me last night?

Grant said that he scraped the car against one of those light posts in the shopping center, the kind with a cement base.  He got out of the car but it was so dark he could not see.  He couldnt see any paint at all on the car and neither could another guy who saw the accident so he assumed that he didnt do any damage.

Grant and I share a car since we are disabled and are often housebound.  When I had my own car (I was a Volkswagen Beetle type of girl) I kept it in a pristine state, washing it ever two weeks, inside and out, and if there was any dents or dings from a person slamming their door into my car, I fixed it right away.  Of course, now we cant afford to do something like this, to our 7 month old car.

I need to vent here and tell you that Grant might possibly be one of the worse drivers I have ever seen.  We had to get our brakes replaced in our last car, less than three years after we had gotten it.  He is always slamming on them. He has had many near misses. He is constantly hitting light posts and support beams.  It didnt matter so much when it was his own car, that was his problem, but I dont have much in this world and our car was the last purchase we made before we proceeded to trash our credit.

I was crying and shaking, its not just about the car, you know, its just…EVERYTHING.  I went to a car wash, the first car wash ever for my seven month old car to see if any of the paint would come off.  The very friendly man must have thought I looked pathetic because after the car wash, for free, he lacquered off the paint, leaving only the small dents and scratches. At least I didn’t have any bright yellow paint on my car any more, I could live with it, until one day when we have money again, I could get the rest of the car fixed.

The man told me that since he had taken the cars original coating off, that I needed to wax it in the next few days or it would start to rust.  He was very honest and told me I could find wax a lot cheaper somewhere else. So I headed to the automotive store and picked up the wax.  As I was driving home, Grant called and said that my PCP had the medical records I needed for my disability so I went and picked them up.  One thing accomplished.

Since I was so close, I decided to stop over at the pharmacy that handles my pain medication.  Last month, even though I pay over $600 in private health insurance a month, because my pain med, Opana ER, does not come in a generic form, the two doses I have to take, one 30 mg tablet every 12 hours, and 5 mg.s for breakthrough pain, the CO-PAY cost over $300!  It really set us back last month, a surprise expense like that, and I had never had to pay for something this much out of pocket, while already paying for my own private insurance.

The pharmacist at this local pharmacy can be happy, annoyed, humorous, brusque; I honestly think that he may have some mental issues.  I usually go to a chain pharmacy but this pharmacy is a headquarters for medication and they always have what you need, so my PCP wanted me to go through him.  But a week ago when I gave him my Rxs again, he told me that he was going to do the best he could for me.  What is this, lets make a deal?, I said.   Emily you are so funny!, he laughed.

Things are pretty bad right now for us, I couldnt afford to pay $300 so I wanted to see what he meant when he told me he would do the best he could for me.

When I came in, I asked him how he did on my Opana Rxs.  Who are you?, he asked.  I was really taken aback by this. Remember last week when you told me you were going to see what you could do for me?  You were going to make me a deal?

What deal?, he snapped.  I dont make deals with people about their medications!…Oh, yeah, I called the company to try to get you a $25 coupon and they told me they didnt have any.

One of his assistants gives me the drugs, over $300.  I started to shake and the tears started coming.  I dont have the money for them.  This was not what I was expecting when Owen said he would help me.

Are you okay? the assistant asked.  I wasnt.  This is the first time it really hit me; I dont have any money, I cannot afford my medication, how will I function when even with the medication, I am still in a lot of pain?  I asked to speak to the pharmacist privately.  My thought was that perhaps he could fill the Rxs and I could take them from him, little by little and pay for them little by little.

The pharmacist was not coming over to me.  I started to cry more and more.  It hurt to stand and the stress and the shock were making the pain worse.

What do you want? You are wasting my associates time, my time and my customers time!

I told him about my proposal and he said, No, I cannot do such a thing!  You are not a customer here!

And then, this was probably one of the most awful, embarrassing things I have encountered since I have been on this journey of being sick and so poor, he threw my written prescriptions in my face!

I was so shocked I couldnt move.  I cannot help you! And he walked away from me.  All of the customers were looking at me.  The pharmacy techs were in disbelief.  How do you treat a human being like that, and a very sick one in chronic pain as well?

I dont know how I was even able to drive but I went into the next parking lot I could go into and called my regular pharmacist.  I was hysterical.  I explained my situation and proposal, and I dont know if this is exactly legal, but she agreed to help me.  Thank God.

I did some grocery shopping while I was there.  I felt so out of control.  And then, I decided to do something that always cheers me up.  I bought something for Tyler.  The woman who could not afford her pain medication bought her son the Thor comic book hes been wanting. I was in control of something…the delight on my childs face when I gave him his comic book.

*Photo courtesy of ARTDUH.COM.

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Alien Summer Campers!

Posted on June 16, 2011 by

(After having just a precious 2 days with my beloved laptop, there is a problem with the new hard drive they put in, so once again, I must bring it to the shop!  I am writing this post on my husbands laptop.  His has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

Inspired by Mama Kat’s Writer’s Workshop


3.) Share a Summer Camp memory.

I was a strange type of kid.  I got called WEIRD, LESBIAN, FREAK, ALIEN, etc. in junior high school.  Except for some reason that I cant explain, it didnt really bother me.  I knew I was better than the kids who were making fun of me and I always had this This Too Will Pass kind of attitude.  Having a best friend name Jennifer who got called the same stuff made it a lot easier.  Jennifer and I were as close as two best friends could be and we didnt need to be friends with someone else who didnt want us in their clique.  This is not to say we had no other friends though.  Jennifer had some older friends, I had a boyfriend and my clique, if you could call it that, was of the brainy kind.

Youre weird, you know that? Thank you, I would say, infuriating the would-be bully.

Emily and Jennifer are space aliens, space aliens. Whatever.

The summer before we were going in to the eighth grade, Jennifer and I went to the Summer day camp through our township.  We hated to be spending a summer amongst THOSE people, but it was the only way if you wanted to be assured of getting a job as a Counsellor in Training next year, that you be a camper before eighth grade.

Camp was pretty fun, actually, with a lot of field trips to the Jersey Shore; the beaches and rides at Asbury Park , the water slides and the Haunted Mansion of Long Branch.  These are the field trips that really stick in my mind, because, besides the fun, they were a way to beat the heat!  If we didnt have a field trip like that, we were stuck in non-airconditioned classrooms or out on the field, playing soft ball or kick ball, my, ahem, favorites.  Jennifer and I were the types of kids who were always picked last for the teams.

When lunch came, you were pretty much on your own, after all, you were a whole 11 years old.  As long as you stayed on school grounds, you could eat anywhere.  Jennifer and I usually ate in the woods surrounding the school from the housing development, and afterwards we would go hiking.

Where do you aliens go for lunch?, the other kids would ask us, since no one dared go into the woods, but we liked them very much.  So peaceful, so much time just to talk and a break from the dunderheads we were going to camp with.

One day it was extremely hot.  We ate quickly and sat by a brook.  I cant stand this, I said, I cant survive in this heat!

I dont remember whose idea it was, Jennifers or Is, but we had about 45 minutes left of lunch period, and so we decided to leave school grounds, in search of a house with a pool! We scratched and scraped our way through the woods until we were in the development and began to explore.  A few minutes later we heard kids laughter and splashing.  It was like an oasis in the desert!  A couple of moms were watching their young kids playing in the pool. We had our camp shirts on, opened up the fence and told the mothers that we were so hot and asked if we could use their pool just for a few minutes.  They were surprised but they said yes.

Jennifer and I had a blast and we even played with the little kids in the pool!  I think the hostess even gave us some snacks and drinks!  Finally it was time to go back to camp.  Mind you, we had gone swimming in our t-shirts and shorts so when we arrived back to camp we were soaking wet.  The other campers noticed that what looked like profuse sweating was actually a couple of cooled off weirdos.

How, how did you get so wet?, they asked.

Oh, I said.  Well, you know how you guys are always calling us Space Aliens?  Well, we are and we just built our own pool and went swimming.

The kids took a step back from us.  They were so stupid and so inside the box, live and die by the rules, it didnt even occur to them that we could have left school grounds and FOUND a pool!

From then on, the Space Alien taunt pretty much disappeared from their unimaginative list of names that they called us.

Because you wouldnt want to cross a Space Alien now would you?  Bwah, ha, ha, ha, ha!

 

 

 

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Tuesdays With Tyler: Gaining My Religion, at the Book Sale

Posted on June 14, 2011 by

(After having just a precious 2 days with my beloved laptop, there is a problem with the new hard drive they put in, so once again, I must bring it to the shop!  I am writing this post on my husbands laptop.  His has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

This Saturday, Tyler and I went to our library’s thrice yearly book sale. The whole book sale really tickes Tyler, going to the library and getting to KEEP a book??  Being a Mommy Blogger, I get plenty of books sent to me so I usually go just to pick out a few for Tyler.  The paperbacks are 50 cents, the hard covers a dollar-fifty, so I make sure I just don’t simply pile a stack into our basket as money remains tight.

Two books stuck out for us on our trip.  We came across Noah’s Arc by Lucy Cousins, who is best knows for her Maisy the Mouse series, but she also writes some downright hilarious versions of fairy tales such as The Three Little Pigs or Little Red Riding Hood, with some incredible illustrations.

We picked up Noah’s Ark right away, me counting my good fortune.

As a young man who worked there was helping us look for things that suited our needs, as every thing was pretty much mixed all around, we both spied upon The Children’s Bible.

“I had the exact same Bible when I a was a child”, I said, tears forming in my eyes. “So did I”, he said.  Tyler was still a little big for the 500 plus pages but I decided this was indeed a keeper.  Noah’s Arc and The Bible, what great finds, among a few others.

On Saturday night, Tyler and I were going through our loot of books.  I love childrens books, love to read to Tyler, and get just as excited as he does, maybe even more to read them! Tyler chose Ms. Cousins’s Noah’s Ark and I dove right in, thinking we would learn the story as well as get a good chuckle. To my surprise it was a straight, serious read, albeit with beautifully illustrated pages.

I had a hard time trying to explain the concept of Noahs Ark, how God told him to pack up his wife and kids, and two animals of every species into a giant boat, and how God was going to flood the rest of the world and kill everyone else and every other animal with it.

This was worse than the movies I have let Tyler watch.

Why Mommy, Tyler asked.  Why would God do that?

I told him that when God first put people on the earth they became bad, but Noah was good, and God was going to destroy every living thing except Noah and his children and two animals of every kind, so that the animals could have babies.  I dont study The Bible that much never but I did remember that God told Noah that he would never ever do that again, so we didn’t have to worry about it.

Tyler still had more questions and so I said, Would you like to read more about Noahs Ark in The Bible?, and he said yes.  My heart skipped a beat as Tyler has taken to religion the way he has taken to water. Talk about scarier than a movie.  I guess we children were tougher back in those days as I had to explain to Tyler that the animals and the people were drowning while the flood was happening.

Mommy, whats a flood?  Whats drowning?

We stopped reading after the rain stopped.

Is this how parents teach their children about religion?  Being a mom with chronic illness, pain and fatigue, I have never taken Tyler to church, although I know I need to and I want to. Its hard because there is no one around me who is a Catholic.  Grant is Agnostic.

I know that next year, in the first grade, Tyler will have to start CCD if he is to make his Holy First Communion on time.

I had made my peace with God and Jesus.  I have a strong belief in Them but I do not believe that They are holding it against me that I am not attending church, as I am usually sleeping, and not the lazy, sleeping-in way, but the way that if I do not sleep I will get very ill type of way.  I think They get that.

But I have a well child.  A well child who I AM trying to do things for, like taking him to the library or to karate class.  And now I will have to find it in me to take my well child to Church for there is no one else to do it for me. Please God and Jesus, let me be well enough to be able to take my little boy to church, even if it isnt every week, please let me be able to do this for him…and for me.

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If I Had Never Had My Child…

Posted on June 9, 2011 by

(I am writing this post on my husbands laptop, as mine has crashed.  His laptop has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

Inspired by Mama Kat’s Writer’s Workshop.

 

 

 

3.) Describe what you think your life would be like if you had never had kids.
(inspired by Amy from Somebody’s Parent)

I must thank Amy for this prompt for this is something that chronically ill people who are raising children probably think about every day of their lives.

My husband and I were married when I was 33 years old in 2002 and had planned to wait about a year before we would try to have a child, but two months into our marriage I started to show the symptoms of Rheumatoid Arthritis. Children had to go on the back-burner, as I would go on a journey of extreme pain and frustration until I was properly diagnosed.  Once I was, it took me over a year to start feeling decent to the point that living with RA was not such a struggle and that as long as I took my medication regimen, I felt pretty good. Other diseases and conditions developed such as Fibromyalgia and Chronic Fatigue, but with medication and proper rest, my illnesses were livable and I was able to continue working full-time.

In 2005, my husband, who is also chronically ill, and I felt we were in the best health we were ever going to be. We made an appointment with a genetic counsellor who told us that because Grant and I did not have a family history of our physical illnesses, a child would only have a 1-2% chance above the average population of inheriting them.  I researched my medications, decided what I would stay on and what I would come off of, and in October of 2005 I started to monitor my ovulation and basel temperature as I was 36 years old and was not sure how easy it would be to conceive.

Grant and I decided that we would leave conception up to God.  Meaning that for us, and I do not judge anyone else, if we could not conceive naturally then that would be a sign from God telling us that a child was not meant to be.

But I guess Tyler was because I conceived the first time I tried!  It was the happiest time of my life. I was the type of woman who had wanted a child since she was a child.  I think Grant and I were both thinking that we would want at least two children.

I found out I was pregnant January 7, 2006.  On January 9th, Grant and I were awarded a very large sum of money from a lawsuit.  We were on top of the world.

When Tyler was born I suffered terribly from postpartum depression.  I wouldnt describe Tyler as a baby who had colic, for he was happy most of the time, but he would stay up anywhere from 10 to 14 hours at a clip, which as many of you know, is extremely unusual for an infant!  I was exhausted, I would walk the floors, trying to get him to go to sleep.  When Tyler was four months old I found I could not walk on one of my feet, the pain was so bad that I went to the emergency room.  The diagnosis:  Your RA is flaring.  They sent me home with crutches, which was idiotic for someone who had Costochondritis.  Sure enough, all of my ribs started to flare.  I couldnt use the crutches so I had to crawl to my baby when he needed me and bring all of his things to the floor.  We lived on the floor.

Despite this and when those flares calmed down, I never tired of playing, singing and just being with Tyler.  As he became more mobile, I loved taking him to the park, pushing him on the swings, even going down the slides and playing on the jungle gyms myself.  Motherhood was finally the completion of the life that I wanted.

I went back to work when Tyler was seven-and-a-half-months-old.  I was doing the Super Mom thing.  Grants health began to fail so badly he was let go from his job in May of 2007, as he never told them about his illnesses.

In October I suddenly found myself very sick.  Painful joints, exhausted, I was popping narcotics like they were candy and falling asleep during my commute.  In March of 2008 I was laid off, a victim of the economy. I looked at this as a blessing.  I was just tired and if I rested I would get stronger, and then I would look for another job. Instead I just got sicker, by the day.

I was diagnosed with Lupus that June.  That was it for me.  I could not  work any more.  I kept Tyler in daycare because I couldnt take care of him on a 24/7 basis.  As I wait now for my disability, all of our money is gone and we will file for bankruptcy this month.

Did having Tyler make me sicker?  Yes, probably, as is often the case with hormonal, postpartum women.  Do I regret having him?  Here is where it gets tricky.  No, not for ME, for it is through him that I experience moments of profound joy.  But for HIM…yes, I do.  Gone are all of the dreams I had for my son.  The dreams that most American families have and achieve.  A house with a backyard, helping him go to college, taking him on vacations.  I dont know if this will ever be and I wonder if some day he will turn on me, and so he should.  He will never remember a time his parents werent sick.

Grant and I were stupid, naive.  It never occurred to us that we could get sicker.  If we had thought this through we never would have had a child because for US, and I capitalize that, because I do not want to offend other chronically ill parents, that would have been irresponsible.

If I had never had my child I might be a bit healthier, less tired, maybe still working, with a lot more money. But there would be a hole in both Grant and I s hearts, for Tyler is truly the completion of our family.

For us, Three is the Magic Number.

http://youtu.be/m3Li-rTuBKs


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Tuesdays With Tyler: Tyler’s Twitter Account!

Posted on June 7, 2011 by

(I am writing this post on my husbands laptop, as mine has crashed.  His laptop has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

Tyler, like most children, says a ton of cute, and often heartbreaking, endearing and profound things.  I have tried to write them all down, to save for future Tuesdays With Tyler, but I cannot keep up with them!  I dont mean to brag, and I have seen lots of mom bloggers find ways to post their childrens wisdom.  One mom blogger has a rolling type of thing on her blog entitled, Funny Things My Kid Says, but I am not that clever.  So I thought of a Twitter account for him.  I mean really, he is nearly five-years-old, it is like getting a bicycle (only Tyler doesnt want one), it is time.

Tyler knows that I write about him.  I really think he enjoys being exploited.  Sometimes I think he tries to come up with stuff that he thinks I will find funny and then he smiles and goes on and on when he sees I have taken my smartphone out, to either write it down for a future blog post or post the story to my friends on Face Book. Only Emily and Mama Sick do not have a Face Book account, although it is on my list!  So I felt that this was the best way for people who are interested in hearing more of Tyler to “share the love”.

Here is his cute little Avatar, for now at least! Notice his dirty face? I am just noticing this now. Oh, well.

Here is Tyler’s Twitter account.  It will be his actual quotes, along with what I think he is thinking as the son of two parents who are chronically ill, or even what he may have been thinking if he WAS here such as:

mamasicksson
mamasicksson mamasicksson 

My mommy is cleaning my room. I am taking a nap now. So is my daddy.
Or:
mamasicksson
mamasicksson mamasicksson 

Mommy, you smell like garbage! (Why does my mommy sometimes smell nice and sometimes smell like garbage?)
Or even this:
mamasicksson
mamasicksson mamasicksson 

I am a very good boy, I was at the toy store and I wanted to push the shopping cart. “I want to help your pain, Mommy.” My mommy is sick:-(

You see? If you would like to hear more from my darling son, please follow Tyler.  It will make him and his Mama very happy.  Thank you.

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At a Snails Pace

Posted on June 5, 2011 by

I read The Sound of a Wild Snail Eating, by Elisabeth Tova Bailey, as a member of the From Left to Write book club.  I was given a free copy as part of the book club.  This post was inspired by the book.

(I am writing this post on my husbands laptop, as mine has crashed.  His laptop has a possessive/quote key that works about 25% of the time.  As he is a professional writer I do not know how he can stand this, but there it is.  I write this to let people know that my grammar and editing are much better than it would appear. Thank you.)

I first heard of this book when I caught part of an interview with Bailey about her book on NPR.  Having chronic illness myself, I was immediately attracted to it.  This must be a book I would read.  I really wanted our book club to read it too, because I felt that it would provide some insight into the world, my world of a chronically ill, chronically in pain person, and so I set about measures to bring the book into my club, and here we all are.

Due to a many years undiagnosed illness, Bailey spent a good deal of her time bedridden, and had a lot of time to observe and find many parallels between her pet snail and herself.  Although I am not entirely bedridden, I do feel my best in bed, and spend as much time as I can there.  After spending a few hours of shopping with my son and my friend today, I went straight to bed, got up when I heard my little boy pounding on my door, and through sleepiness, fog and pain, put together a Lego fire truck and threw in some laundry.  After about an hour of that, I went back to bed for another hour an a half and it is here I will stay for the rest of the evening and through the night.  I live on pain killers to keep me upright and then pay the price for being upright.  I could definitely relate.

I am going to withdraw from the world; nothing that happens there is any concern of mine.  And the snail went into his house and puttied up the entrance. – Hans Christian Andersen, The Snail and the Rosebush, 1861

How powerful is this quote to the chronically ill person!  The feeling to pull away from the world, to protect themselves from becoming sicker by visiting friends, going to a party, even going to a mall.  And I know many people who have done just that, because living in LIFE hurts us too much, physically and mentally, and why would we want to cause ourselves more pain when we can live on our laptops, read books or watch television in bed?

But I have a four-and-a-half-year-old little boy who is active and thank God very healthy and I must step into the world with him.  I must take him places; zoos, museums, on play-dates.  And so I do and pay the consequences later.  But it is a labor of love, and we work as a team, him pulling me into the world and me doing as best as I can to see that he lives a normal as life as possible, doing the best I can to be SUPER MOM, despite my many limitations.

Tyler and I at his schools Mothers Day Program

As Bailey often speaks of in her book, she feels deserted by many of her friends and family.  As most people cannot grasp the concept of chronic illness, they do not know what to say, or what even to do with us.  So many times we must say NO to weddings, baby showers or cook-outs and then…they just stop inviting us.  Some of our friends and families outright just do not GET IT.  They may think we are lying or exaggerating our illness.  How could you be this sick for this long?  You do not look sick.  You are too young to be this sick.  When are you going to get better?

And for most of us the answer is, we ARENT, this is how we will live for the rest of our lives, and yes, it is not such a very nice life, and yes, I do sometimes wonder why I keep living it, suffering from my illnesses and the consequences of them such as poverty and the slow wasting away of my body.

But as I said, I have my son and a sick husband who needs me as well, and so I MUST go on living it.

As a Elisabeth Tova Bailey writes in her journal:

Lots to do at whatever pace I can go.  I must remember the snail, always remember the snail.

Wildsnailcover-210

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My Life In Six Words

Posted on June 2, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.


1.) Six Word Memoir: Write about a significant time in your life in just six words.

First asked why.  Found the purpose.

http://www.mamasick.com/2011/05/my-2nd-blogiversary-the-mission-continues/

http://www.smithmag.net/community/people.php/MamaSick


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Tuesdays With Tyler: Memorial Day Weekend!

Posted on May 31, 2011 by

(On my husbands laptop again.  As we speak my Genius Computer Guy is trying to recover my data from the old hard drive, and then hopefully put it on my new hard drive, please God!  Please note that my husbands possessive/quote key does not work (I dont know how he stands it!), I do not have bad grammar.  Thank you.  Oh, and also, no real names have been used here.  Ok.)

Memorial Day Weekend was looking bleak, with the most exciting thing we were going to do being going to the grocery store, when we got an impromptu invitation to an impromptu barbeque.  One of the friends that I have made through Tylers school, along with her husband, was throwing a barbeque, with three other sets of parents and kids from the school invited!  Tyler has a good friend in Mark but I have found an even better friend in his mother Maureen.  I dont know how, but she just seems to get that I am sick and accepts me for who I am and for what I cannot be.  If I need to cancel, shes cool, if Grant doesnt show up, its fine, she is really laid-back, but more than that, she is a wonderful friend who has been one of the first people I have let in in a long time.  I long to give Tyler a normal life, with play dates and parties, and Maureen has helped make this possible.

The barbeque was Sunday, and I was really proud of Grant and happy that he was able to come along.  For the first time in a very long time, we were a real family at a holiday party with food and kids and stimulating adult conversation.

Among Tylers quirks is that he hates water, the pool, the ocean.  He loves the bath, but anything else is too cold and he once told Grant that if you go in the water you die.  I had called the pediatrician a week ago about his fear of water, as well as dogs.  Was it his OCD, Anxiety, something else?  The doctor wanted to have Tyler evaluated by the school district but they do not do that until school starts.  (Can you believe he will be going to kindergarten in the Fall?!)  Until we find out what is going on, he did not want Tyler to be forced or coaxed into the water, or be exposed to any dog; the exact opposite of what I would have thought to do.  Maureen has a medium-size kiddie pool.  She had emailed me a picture of it.  I showed it to Tyler and he said, I will try it, Mommy, but when we got there it was a no-go.  It makes me sad that he does not enjoy the water as I did when I was a child, and I wonder what we are going to do all summer, but thats my kid.  The other boys were not in the pool all of the time so he had a wonderful time playing inside and out.

Tyler and his friends, at the little table, enjoying the EATS!

Tyler and his friends, at the little table, enjoying the EATS!

I decided to have one alcoholic drink at the party…my pharmacist told me I could, okay?  Anyway, I dont know if it was my diseases, my meds or the alcohol, but I was sweating more than a boiler room worker.  More than Maureens husband who was working the grill, more than my other friend who is 38 weeks pregnant (beautiful, pregnant bitch!).  It was SO embarrassing, I went through like 5 large napkins.

This is just a picture of my really cute kid.

This is just a picture of my really cute kid.

But all three of us did have a really good time.  Even though I immediately developed a sore throat and sores on my tongue and was exhausted.  Even though it took me two days to recover.  Even though I knew I was going to get sick.  Sometimes we sick moms just have to suffer for our families so that they can have a good time…and we can too.

Grant hangs out while the boys enjoy their popsicles.

Grant hangs out while the boys enjoy their popsicles.

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