Mama Sick’s Handy Guide For the Healthy Person

Posted on September 16, 2011 by

(This will be my final contribution to Invisible Illness Awareness Week.  If I have helped one new chronically ill person find strength, one chronically ill mom say “Me too!”, if I have educated just one person when it comes to better understanding those of us with Invisible Illness, then I will consider my efforts a success!  Four posts in a row on chronic illness, whew!)

Dear Healthy People,

I know you mean the very best when you say certain things to us chronically ill people, but here are a couple of things that you always say that kind of cheeses me off, and I cannot be alone in this:

Scenario 1

“Feel better.”

Whether I have talked with a healthy person and told them only about my Lupus or that I have 15 diagnoses (and counting!), the answer is always the same:  “Feel better.”

Sir or madam, I have 15 diseases.  It is unlikely that even one of them is going to be cured in the next five years, much less my lifetime.  When you tell me to “Feel better”, I politely say “thank you”, or if you happen to be the judge in my disability case who told me to “Feel better” and has YET to give me her decision for two months now, I may say, “Thank you very much but with all due respect, you honor I will NEVER feel better!”

Here is a better response when you have ended your conversation with a person who has a major disease, or many diseases:

“Well, I hope you can be as well as is possible.”

or

“I hope you are as well as can be.”

See the big difference?  Look how easy that is!  Your end to your awkward conversation has been resolved!”

Scenario 2

I am talking to a neighbor or a friend that I haven’t known very well:

a) “Stop saying you are sick!  You look just fine to me!”

or

b) “You need to be more positive!  You have so many joys in your life!  You have a wonderful son! You have got to LIVE for HIM!”

or

c) “Well, you are still so beautiful!  You look like you are in your twenties!  You certainly don’t look sick!”

Why I do not need to hear quote a):

If you don’t want to hear that I am sick then please don’t even ask how I am doing.  A simple “How are you?” or “Hello!” in passing will suffice.  Please do not debate that I am sick, no matter how well I look, and if you keep on doing it I will have my Rheumatologist give you a call to confirm that I am, indeed, very ill.

Why I do not need to hear quote b):

I am not a negative person, I am a realistic person.  I have 15 diseases, one of which can be fatal. Google those stats on your computer.  I am most likely not going to have an average life expectancy. It is not negativity, it is fact.  And if I do happen to live to 80, it’s a bonus!

I do have many joys in my life, one who is my son and HE IS one of the great motivators in my life. Yes, thank you, I am aware how wonderful my son is, he lives with me.  And I am not just living for him, I enjoy writing, reading, talking with my friends, being with my husband, laughing…

I am more than my diseases, I do know that.  Life’s not all pain, sickness and poverty, I have much love and happiness.

And why I do not need to hear quote c):

Thank you for the compliment.  I know that I am an attractive female.  I was born that way. The natural oils in my skin which gave me acne that plagued me through my teens is serving me well now that I am forty.

Thanks for saying I don’t look sick but…

I would gladly give up my looks and look ten years older to be well again so I can enjoy my son, and husband, and zoos and museums and Disney World without having to be sick in bed for two days afterwards.

So, what should you say to a chronically ill person?  Listen to us, please don’t feel you need to give us any advice, we are not asking you for any.  You do not need to be our cheering coach, you just need to be our friends.

And the reason I don’t look sick?

That is why this is Invisible Illness Awareness Week.

 

 

 

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You Are NOT The Only One

Posted on September 15, 2011 by

(As Invisible Illness Awareness Week continues, I am dedicating my posts to those with Chronic Invisible Illnesses, and to helping those who may know of someone with an Invisible Illness better understand them.  It is an honor for me to be a part of this cause!)

Not only do I blog about chronic illness, I “talk the talk” as well.  Having been chronically ill since 2003, I seemed to have developed somewhat of a “sixth sense”.  it is weird, but I have this instinct for being able to “see” people who have Invisible Illnesses.

This summer I was getting coffee at a Dunkin’ Donuts and I saw this pretty young woman carrying her infant in the removable car seat.  Everyone was remarking how beautiful the little girl was and she had one of those traditional names like Charlotte or Lily that I love.

I said to the woman, “How are you doing?”, and I told her how I remembered how heavy carrying a 20 pound car seat with a ten + pound baby was.  She said, “Yes it is hard and…it’s not just that…I have M.S.”  I told her that I had Lupus and I had Rheumatoid Arthritis when my son was born.  “You did?  You do?”  I told her my story, the short form, about how I used to have to crawl to Tyler when I could not walk and Tyler was crying or needed to be changed or fed.

And then, she started to cry.  “There’s no one else like us in the world!”  And she broke down.

I put my arm around her.  “Aren’t you on any support groups for your M.S.?”

“Oh, no. Those places are just depressing. People just moan about how bad they feel.  And they don’t understand what it is like to have M.S. and have a baby.”

I guess I had been living in a bubble.  I had thought if you had a major disease in this day and age, you would be on at least one internet support group.  And that if you were a mom with a major illness you would be on several!

But I live in the world of Social Media.  I am a blogger, a tweeter, I am on Face Book, Google+.  I never would have made it, literally, not have been on this planet today without the support of my friends that I have found on the internet.

“Rachel, you are wrong about you and I being the only ones!  There are hundreds of thousands of women just like us who are raising children while dealing with not just one disease but many!  They are doing it every day.  They are getting through it, and you will too!”

I told her about sites like But You Don’t Look Sick and Chronic Babe.  That they weren’t the depressing, “poor us” sights she thought they were.  That they were fun and the people on them were interesting and cool and beautiful and they were from all over the world.  And that we laugh and that I have made REAL friends that I can share my life with, and yes, when I am in trouble, I have their phone numbers because sometimes I need to speak to someone…

Just like me.

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Chronic Illness and Our Children

Posted on September 14, 2011 by

(In honor of Invisible Illness Awareness Week, I am dedicating my posts to those with chronic illnesses and to helping those who may know someone with a chronic illness to better understand them.  It is an honor for me to be a part of this cause!)

Tyler will never know a day in his life when I did not feel so sick. He will not remember me taking him to the playground, pushing him on the swings, and sliding down the slide with him.  He will not remember the first birthday bash I threw for him, dealing with caterers and squishing two dozen adults and children into my “too small for that” apartment.

Lupus struck me in October of 2007 and I was diagnosed with it nine months later, when Tyler was almost three years old.

We bought lots of books.  Books like “My Mommy Has Lupus!”  “My Mommy is Sick!”  (These may or may not be real books, I am just going by memory.)

We never used the books.

To explain my illness we used…Spider-Man.  If you are a regular reader you are laughing, and if you are new here (welcome!) you should know that my son has been obsessed with everything that is Spider-Man since he was three-years-old, and we use Spider-Man for just about anything we need to explain to Tyler.

If you are a Spider-Man freak (doubtful) you may know about Six-Armed Spider-Man.  In the version Tyler knows about, Spider-Man starts to become more Spider than Man.  In the beginning he suffers great pain “The pain is excruciating!”  (That’s how Tyler learned the word ‘excruciating’) coming from his ribs.  Eventually he completely turns into a giant monster spider.

Laugh if you may, but because of this episode saga, Tyler began to understand what pain meant.  I told him, “You know how Spider-Man holds his ribs before his other arms pop out? That’s kind of like the pain Mommy feels when her pain is really bad.”

And he got it.

Since then, Tyler, now five, has been my biggest champion in the smallest body.  When I was faced with losing my hair he said to me, “But you will still be pretty, Mommy.”  When we go shopping, he insists on pushing the cart so I don’t have to.  He has asked people to give me a ride because I was having trouble walking.

He kind of has to be my defender and protector.  Over the summer I started to need to wear bandages on my wrists and knees, and sometimes ankles because I am suffering with Hypermobility Syndrome.  It has yet to be categorized and typed, I can only deal with so many diseases at a time.  The bandages help stabilize my joints, so the pain can be less and so I can use my wrists and be able to walk.  Usually people can only see my wrists because I mostly wear Capri pants in the summer.

Every time I am out with Tyler, strangers come right up to me and say, “What happened to YOU?” I know they do not mean anything by it.  They look at me and think Wow, what kind of accident did this woman have that she needs bandages on both hands??  I look at it as akin to breaking your leg and a stranger asking, “How did you do that?”

You can say one of my illnesses is now VISIBLE.

They do not like the answer that I give when I tell them the truth.  Their faces fall, their body language indicates that they are horribly uncomfortable.  Hah!  That’s what you get for asking!

Actually, I really don’t think that.  Instead, I look at it as an opportunity to educate each and every one of those people.  I try to make them comfortable again.  I try to make them see that I am not a freak.  They usually end up smiling and saying, “Wow, I have never even heard of that disease before!”

Anyway, I imagine how tough it must be for Tyler to hear it every single time we are out together. Sometimes more than twice a day.

The way I see it, my son is either going to grow up to be a doctor or a very messed up adult.

I am loving my child, I am being the best parent that I can possibly be with the tools that I have been given.

I’m hoping for the doctor.

Fun With Nutella!

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Take a Breath

Posted on September 13, 2011 by

(We interrupt our regularly scheduled Tuesdays With Tyler in honor of Invisible Illness Awareness Week. For the rest of the week, as much as I can, I hope to concentrate on comforting those who are first experiencing illness, those who continue to live a life in chronic pain and with chronic illness, and educating those who do not know about what it is like to live with an Invisible Illness.  (That’s where the Awareness part comes in!))

The theme for this year’s Invisible Illness Awareness Week is “Take a Breath”.  What do you do when you are told by a doctor that you have Ehlers-Danlos Syndrome? Even worse, what do you do when you know you are sick and every doctor in the world is telling you you aren’t?

There are a lot of scenarios.  What do you do when you start collecting Invisible Illnesses like one would collect stamps?

Having 15 different diagnoses and conditions, I have chosen to write about how I have dealt with being given diagnoses upon diagnoses.  I have been fortunate that the longest I ever went without a diagnosis was for six months, before I was diagnosed with Rheumatoid Arthritis in 2003.  I do consider myself lucky that I have very little joint damage due to a proper diagnoses and the medicines available to me and others like me in this day and age.

I thought Rheumatoid Arthritis was the worst disease I would ever get.  I cried and cried.  I wondered about my future, would I ever be able to have the children my new husband and I dreamed of?  How was I going to manage work with this excruciating pain, how would I ever be able to work out again at the gym, when I couldn’t even walk without pain?

Slowly, my life changed and I was forced to accept it because what other choice did I have?  I lived to work, meaning, if I wasn’t working, I pretty much was resting, napping or sleeping until I had to go back to work.  When I went on business trips I had to take ice packs with me so that I could use them on my break, in the morning or at night to ice down my swollen feet.  It was not uncommon for me to throw up in the morning and then get ready to go to work.  I look back on those years and I wonder, “How the Hell did I DO that?”  

There is no real answer to that question.  I did it because I HAD TO.  Grant and I s’ marriage was a partnership but I was the main breadwinner, so there just was no choice other than to keep on going.  Nights were the worse.  I surfed the internet, I watched mindless television like Newlyweds: Nick and Jessica, anything to distract me from the pain; even though I was on narcotics, the pain was still breaking through.  Eventually I came upon the website But You Don’t Look Sick, run by Christine Miserandino, whom I truly believe I owe my life to.

To write about all 15 diseases I have would take a book.  There is one disease that I dreaded, the one that if I thought I got, I would NEVER be able to deal with it.  I was warned that having Rheumatoid Arthritis, I could “cross over into” that disease at any time.

It happened a year after I had my son.  I was working in a new job and in October of 2007 I felt the pain and swelling increasing.  On Thanksgiving, not having any medication because I had felt okay without it, I was ashamed to admit that I stopped at a liquor store in an effort to get some relief from the pain, or I could not make it through Thanksgiving.  Eventually I saw my Primary Care Doctor who, God bless him, gave me Percocet.

I was taking 8 Percocet a day just to get through my work day.  I had problems with a co-worker stealing my drugs.  Very few people knew what I was going through at work because I knew that my company’s environment was not “disability friendly”.  I was falling asleep driving to and from work.  It is with God’s grace that I never hurt or killed myself or anyone else.

In March of 2008 I was laid off from my job.  It was the start of the economy having a meltdown. Last hired, first laid off.  They never knew how sick I was.  As angry as I was about the situation, I looked upon it as a blessing.  I was probably just a tired working mom, trying to do it all.  I would collect unemployment and take a couple of months just to rest and relax and then I would get better.

Instead I just kept getting sicker, by the day.

I had a Rheumatologist who did not believe I was in the pain I said I was in.  My blood work was saying “Normal”.  I fired this doctor.  I found a new Rheumatologist who was recommended to me by my primary doctor.  I would have to wait two-and-a-half months to see her, but at that point I had realized that any doctor with a waiting list that long had to be good.

In June of 2008 I had my appointment with her.  She spent an hour with me.  She listened to me. She examined me all over.  She believed me.  She told me about a company out in California who works exclusively with the blood work of people with Auto Immune Diseases and suspected Auto Immune Diseases.  I asked her what she thought I had and she said, “Oh, I’m not even going to guess until I see the whole picture.”  As frustrating as it was to hear that, I knew that I had finally found MY Rheumatologist.

And then, there is was, in black and white, as they say.  LUPUS.  My type, my titer, my pattern, everything.  I had the disease that I had feared the most: LUPUS.

I remember going to the message boards of ButYouDontLookSick.com.  At that time I was one of the Moderators of the boards and posting in the Lupus forum.  My topic was, “I Didn’t Want to Have to Post Here.”  I didn’t want to be in that forum, I did not want to tell my fucking Lupus story!  I remember someone replying back to me, “None of us want to be here.”

No one wants to have Lupus.

With a one-and-a-half-year-old, how would I deal with it?  I couldn’t cry, I couldn’t mourn, my baby needed me.

I was never able to go back to work after my Lupus diagnosis.  It was the old straw that broke my chronically ill back you could say.

I was forced to take a breath.  I had to.  I was a mother, I was a wife.  I could no longer work, but I still had those jobs.

My will to live is very strong, I know that now.  I will do whatever it takes, take what ever medication and treatments are needed to keep going.  I want to live, at least until my son is a grown-up, I don’ think that is too unreasonable a request.  I will take the joys that life offers me, along with the pain.

I will keep going.

I will keep breathing.

 

 

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For My Son on His 5th Birthday

Posted on September 12, 2011 by

Well, my darling, you have hit the “big 5!”  Today after school we will take you to Toys r Us to pick something out and we are going to have a cake, a small celebration, just the three of us, plus Lizzie and Scotty!  What would a birthday be like without the kitties, right?  You absolutely adore Lizzie and the feeling is mutual!  You enjoy playing hide and seek with her and chasing her around the house, and she loves it too!  You are keeping her young and I thank you for that.

We are counting down the days to your birthday party with Spider-Man and all of your friends.  Five more days!  I made a calendar for you to show you what your important days were for September. Not only was it your birthday but you started kindergarten!  You are in big-boy school!  What a month for you!  Today begins your second week of school.  You tell me you like it but that it is a long day!  You claim that your girlfriend is in your school, but we don’t know if we believe you.

You grew up a lot this year.  You are no longer afraid of dogs.  You are no longer afraid of the flush in a public restroom.  These things that Mommy worried about are no more.

Right now, dear son, I am worried about how you will do in school.  How or if your Tourette’s Syndrome or OCD and other issues will affect you.  I am worried that once you get comfortable with school you might start acting out.  You are still acting out at home, and our 90-day checks for good behavior chart to get a prize takes a long time to fill out.

You are finally moving out of my bed, realizing that this isn’t the right place for you.  You often sleep on our love seat, you are still not ready yet to sleep in your own room, but I know that it will be soon and I better start looking for some new furniture for you and quickly!  You still cannot be left alone. Mommy cannot get the mail without you, or the newspaper, and if we walk what you consider to be too far away from you in a store, you start screaming for us, fearing that we will leave you behind.  I think it is normal for what you have been through, and I know you will grow out of all of these things with time.

You love girls.  Every girl you meet you want to be her boyfriend.  You are so handsome, it is not just me who says so, so I know it to be true!  You are going to break a lot of hearts and maybe soon!

Your favorite shows are The Mickey Mouse Club House, Phineas and Ferb, and so many of the Cartoon Network shows.  You love watching the Batman cartoon and all of the Spider-Man Movies, and two Spider-Man t.v. series that we have on DVD.

Spider-Man is still your favorite toy, favorite everything.  For the third year in a row, you are going as Spider-Man for Halloween!  This time you will be going back to the “Red” Spider-Man.

You love your Batman toys too, everything that is superhero.  You love Legos and have created some amazing things with them.  You are starting to collect the Lego Ninjago series and Mommy is loving doing them with you.

You started karate this summer and you love it!  You look so cute in your uniform!  So small!  I really hope you keep up with it because I know that it will help you with your concentration and behavior issues.  It will help you not be the victim of a bully.  It will let you know that if you ever needed to, you can defend yourself, but I hope you never need to.

You saw your first movie this year! You saw Cars 2 this summer and so far you have seen Winnie the Pooh and The Smurfs.  Daddy and I enjoyed seeing them with you too.  You weigh too little for the chair and you hate the booster seat so you sort of lean through the whole movie.  Soon enough you will be big enough to sit in the comfy movie chairs.

You are so smart, you honestly scare me.  You quote from movies and television programs, I am amazed at your memory.  You cannot read yet but you memorize the books and are able to “read” them to the therapy dog I took you to, to get over your fear of dogs, and the other children.  You “get” things that you are too young to be getting.  You see the two different levels of the Looney Tunes cartoons.  I worry that you will “out-brain” me soon, if you haven’t already.  You love to play practical jokes, make up scenes and plays with your superhero characters; you have an amazing imagination.

I didn’t know that you would be pulling away from me already, my baby.  It is already hard to get a “real” hug or cuddle.  I sneak them while we are gently rough-housing, if that can be a phrase.  You know how easy it is to hurt Mommy.  You have accepted me for who I am, how I look, the bandages I need to wear.  People right in front of you are always asking what is wrong with me, because they think I broke both of my wrists.  I bet you wonder why they do that.

On your 5th birthday, yes, you do have some real issues that we are going to have to deal with, but for the most part you are a delight to be around.  Know that no matter how tough things may get, that I will always love you.  When you, Daddy, and I are watching the new Looney Tunes show on Tuesday nights, there is no where else I would rather be in the whole world, and I cannot imagine being any more content.

Happy Birthday, my darling boy, from the person who I think loves you more than any other person does, or will ever will.  I am looking forward to seeing what five-year-old you will bring.

Always on the go! Taken the weekend before his fifth birthday.

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September 11th: Through a Child’s Eyes

Posted on September 11, 2011 by

I started tearing up yesterday.  My friend, who had lost his father on September 11, 2001 on Flight 93, had put up a tribute to one of our classmates who had worked in one of the Twin Towers. Today I got up and I felt so upset.  But I have a little boy who is going to turn five tomorrow and who wouldn’t understand why his mommy might “lose it” today.  It seems every channel except Disney and The Cartoon Network is covering the anniversary.  Other than New York, New Jersey lost the most state citizens on 9-11, so we may have more coverage than where you are living.

My son was born September 12th, 2006.  My dad died September 13th, 2003.  On the fifth anniversary of September 11th, I was scheduled to be induced.  I remember being hesitant about the date.  I have to admit, I did not want to have a September 11th baby.  But my induction was scheduled for the evening, and I was just going to be receiving Cervidil, a mild drug to help me get ready for labor.  My Ob/Gyn told me it was very unlikely I would have the baby on September 11th. On that day I was still running around, even going to the baby furniture store because I still didn’t have my changing table.  I got stopped by a policeman for walking down a road that was closed due to construction.

“Can you PLEASE give me a break, I am going to have a baby today!  I have to get to the post office!  One look at my bulging stomach and he let me continue on my walk.

So on the fifth anniversary on September 11th, you could say my mind was on other things.

When Osama Bin Laden died this May, I let Tyler see some of the coverage.  I pulled out my September 11th tribute books.  We told him that Osama Bin Laden was like the worst villain that Spider-Man or Batman could ever face and that he had been killed.  Spider-Man and Batman do not kill the villains, but this man killed more people than any villain ever had.

And then I found out that “the experts” said that with children under six, you should avoid discussing Osama Bin Laden altogether.  Oh, well.

As we looked through my September 11th books with photos of the Twin Towers burning, collapsing, and all of the people covered in ashes, Tyler did not seem scared.  He did not cry.

“I am sad because the people died.”

“Me too, honey, I am sad too.  I am very sad”, I replied, trying to hold back my tears.

“Did all the people love each other?”

“Well…the people who died were mommies and daddies, they had friends and other family.  So yes, when The Bad Man killed all of those people, their families and friends were very, very sad.  They loved the people who died when The Bad Man attacked us.”

“Why couldn’t Spider-Man help?”

“Well…I am sure he did help, I bet he saved an awful lot of people but what This Man did was so bad, he blew up buildings and three planes crashed, Spider-Man couldn’t save them all.”

“Did he see them?”

“Yes, Spider-Man saw them and he saved as many people as he could, honey, it was just too much for him.”

“I want to get my Spider-Man.”

And discussion over, we watched a new episode of The Looney Tunes show.

Tyler never brought up Osama Bin Laden again.  And now…today.  I want to see some coverage, some memorials, but our family has only one television.  I want to cry and mourn, but how can I do that without upsetting Tyler, with his birthday being tomorrow, and us celebrating, believe it or not, my husband’s anniversary of getting his cat, Scotty on September 11, 1995.

Today is a hard day for any parent with young children.  I can’t even imagine the victims’ families explaining it to their children, why they are still crying, ten years later.  And all of them with young children who never knew their grandparents, their aunts, their uncles, their parents’ best friends.

My prayers are with you today, Chris Driscoll, for your father.  My prayers are with the family of Chris Gray, my classmate, who worked for Cantor Fitzgerald.  Almost 25% of the people who died on September 11th were employees of Cantor Fitzgerald.

My prayers are with every family member or friend who lost someone to the tragedy on September 11, 2001.

The widow of Joe Driscoll, at the Flight 93 Memorial on September 10, 2011.

Shortly after the death of Osama Bin Laden, I interviewed Joe Driscoll’s son, Chris, about his feelings.  It was an article I am very proud of, one of the most important articles I have ever written and it can be read here.

 

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9-11: Never Forgotten

Posted on September 8, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt #4.  9-11 Memories

Like most people who were probably aged 20 and older, I will never forget where I was when I first realized what was happening on 9-11.  Mine isn’t the most “exciting” story of where I was, in fact it is probably pretty average.  I am going to tell it like I remember it, without checking for factual errors.

I was 31 years old and working for a small recruitment firm that was owned by my boss.  It was the day after Labor Day, back to work after the long weekend, the unofficial end of summer.  As a Recruiter, my job was based on who was at work elsewhere and the short week was always slow as many people took vacation that week as well.   I knew it would be a tough day to “make it happen” as my boss used to say, although I did have one promising candidate who was interviewing in the afternoon.

We all had cubicles and “Mark” who sat behind me, used to keep his radio tuned to an NPR-Classical Music Station.  Mark kept it low so that it would not distract anyone.  Work began promptly at 8:30.  At 9:00, Mark said, “You’re not going to believe it…a plane has crashed into one of the Twin Towers.”  “What?”, we all said.  “Yes, they think it is a tourist plane.”  “Oh, my God”, I said, “It must have been one of those pilots with very little experience.”  We all shook our heads sadly. About ten minutes later, Mark said, with kind of a nervous laugh, “You’re never going to believe this. Another plane has crashed into the World Trade Center!”  I slid my chair back and I knew. Terrorism; it had to be!

At this point we all got up.  Someone ran into my boss’s office and told him what was going on.  The internet was no where near as fast back then and when my boss asked if we would like to come to his home and watch what was going on, we all took him up on his offer, except for one of our administrative assistants as our office was still open.  I remember her saying she knew who did this. “Who?”, many of us asked.  “Osama Bin Laden”, she spat out his name.

I had never heard of him.

I think there were about six of us there.  My boss had, I believe, just gotten one of those big, flat-screen Plasma televisions.  We could watch the horrific events unfurl as if we were watching a movie.

I remember being in my boss’s den and I was facing the television dead on.  My co-workers who were twins were holding hands.  They were twenty-four years old and had not lived as much as I had.  No one there had ever covered a news story like I had.  I was remembering back to the horrible things that I had to cover when I was in radio news.  The domestic terrorism by Timothy McVeigh, the first World Trade Center bombing.  A part of me, the old “newshound” in me, was thinking about if I was still doing radio, how I would be reporting on it, and what assignment in this enormous, horrific event I would be working on.  A part of me wished I still was in the business.

We watched everything live, the Pentagon, the towers, all of them on fire, as well as the surrounding buildings.  I remember looking at one of the towers that was burning really badly and thinking, “The tower is going to come down, the tower is going to come down”, but not saying anything to anyone else.  Why upset them with my conjecture?

And minutes later we all watched as the tower came tumbling down, like a movie that it is either computer-generated or miniaturized…trying to wrap my mind that this was REAL and that there were so many people in there.

We watched the second tower come down too.  I remember the news constantly repeating the footage they had of one of the planes crashing into the towers.  Over and over again.

After about two hours we had had enough.  My candidate called me and told me he had postponed his interview with our client, and that they had understood.  “This isn’t a day for interviewing, or for anything else.” he said. “Except being home with your family.”

When we went back to the office, we were interviewing for another recruiter.  She showed up so I and a few others had to interview her.  That brought us up to about 1:00 and then my boss said that we could all just go home.

Yes, home.  I needed to be home.  I needed to be at home with Grant, we were not married yet, holding him.  I think Grant had gotten home around the same time as I did.  We laid on the couch, in each others arms, just watching the news.  I cried and cried and Grant just watched.

I cried every day for two weeks after September 11, 2001.

One of my classmates’ fathers died in the September 11th tragedy.  He was on Flight 93, the one where the passengers tried to take back the plane.  One of my classmates also died.  70 year old Joe Driscoll of Manalapan, NJ was on his way to Yosemite National Park for his annual hiking trip with some friends.  An annual memorial 5K walk, “Walk With Joe”, was set up in his honor.  It takes place this Saturday on September 10th.  Proceeds from the walk go directly to local area charities such as The Samaritan Center in Manalapan Township, the Flight 93 National Memorial in Shanksville, PA, and the Child Advocacy Center in Freehold, NJ.  For more information on the Walk With Joe, please click here.

 

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Tyler’s First, First Day

Posted on September 7, 2011 by

Monday night I could not sleep.  It was nothing new really; when I wake up, whether to go to the bathroom or I hear a noise, I often awake in pain, and then I need to take something for the pain to go away as it is too much for me just to dose right off again.  Monday night was the eve of Tyler’s first, first day, his first day of kindergarten!  I read for two hours and then decided that I had to try to get back to sleep, even though I didn’t feel tired.

Instead I just laid there, thoughts of the first day of kindergarten swirling in my head.  All of my school-readiness strategies had been cast to the wind on Monday night as I had felt way too sick to lay out Tyler’s clothes, pack Tyler’s snack, and take a shower.  I had to set my alarm for seven a.m. instead of the more comfortable 7:30.  I lay there so freaked out!  I took a sedative, it was now nearly six a.m.

When the alarm woke me, I think the adrenaline kicked in.  I was feeling pretty good for someone who had been up in the middle of the night for three hours.  Was I the only one who ironed my son’s first day of school outfit???  As we got ready to leave Grant said, “Now I won’t have you looking like a fool, taking pictures of Tyler.  If no one else is taking pictures, you aren’t either.”  I didn’t bother arguing I just said, “Believe me, there will be other people taking pictures.”

Of course it had to be pouring rain for the first day of school!  We are under a flood watch and New Jersey had the most damage out of any state from Hurricane Irene, I believe.   It is supposed to rain for at least the next five days!  About two dozen kids and parents were at the bus stop with umbrellas.

 

"I'm going to be doing what now?"

 

Yep, I sure as heck wasn’t alone in the taking of pictures, with some moms even making other kids wait so they could get that “standing by the school bus shot” or the “on the school bus stairs shot”.  Believe me, I restrained myself!

 

The condemned little man

 

 

After we put Tyler on the bus, Grant and I drove to the school because he had too much “stuff” for him to carry in his back pack.  First day of school stuff like a change of clothes, glue sticks, notebooks, all of the stuff that would stay in school with him.  Tyler’s bus actually beat us there because we had to stop for gas.

When we got to his class, there were a little over 20 kids sitting in a very large circle. “Mrs. Q.” (not even her real last name initial, who I had formerly termed “Mrs. Drillsergeant“) has turned out to be a very nice teacher.  We met on Friday for a conference between her and the three of us.  I had the feeling she was either going to be a really horrible teacher or a really great one and I am happy to report that she falls into the latter category!  She really seems committed to keeping Tyler in her class despite his diagnoses of Tourette’s Syndrome, OCD, and Anxiety!

Anyway, she was asking the kids for their notebooks, changes of clothes, checking to see who wanted lunch (Tyler’s is completely free due to our financial situation), and making a fun game out of it.  Tyler smiled and waved when he saw us there and probably breathed a sigh of relief, as we had all or most of that stuff with us…and Tyler had NO CLUE what was in his back pack anyway, except for Eeyore.

Tyler was doing pretty well, he seemed to be calm and comfortable.  One of the little girls was crying and shaking, I felt so badly for her!  I don’t know if her parents were there or not, not everyone has the great “flexibility” of not working to be able to be in the kindergarten classroom after 9 a.m.  Being in daycare since he was seven and a half months old, Tyler is a veteran, thankfully.

And then it was time to go.  Mrs. Q told the kids to stay in the circle and to blow kisses to mom and dad and we would blow them back.

In a parallel universe, five years ago I had my bag for the hospital all packed on September 6th as my due date was September 9th.  And now, here we are, the three of us.  Tyler starting his education, and Tyler, Grant and I all set to celebrate his imminent 5th birthday.

 

 

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The Summer of Chronic

Posted on September 4, 2011 by

About ten minutes ago (around 7 a.m.) I got my first sense of “back to school” dread.  Even though I was a good student, I was a girl who loved her summers.  I was a tom boy; a tree climber, a child who tried to prolong bathing as long as she could, and a fish underwater at our pool club at the YMCA.  My brother and I were always outside. I remember we would pretend we were monkeys.  I, being the oldest, would be the Mommy monkey and he would be my son, and we would swing from trees and eat “monkey” food, which was basically mud pies.

As I got older I still loved summertime.  That freedom (except for when Required Summer Reading came, let’s not even go there) to play all day, watch Gidget , Get Smart, and all the other reruns I could ask for, to read the books that I wanted to (Judy Blume books, read about ten times each book, anything by Paul Zindel, and Harriet the Spy, another book I read ten times) and the days that never ended, being able to play outside until nine ‘o clock at night.

I loved my summers so much that even now, as the weather gets cooler and with only two more days left to go, I still shiver when it is “Back to School Time”.

Of course, this was probably the most unique summer of my life.  For the first time ever, Tyler stayed home with us, except for four weeks of camp that were three hours a day long. It was easier having him stay at home, by the time I would get back home from dropping him off, it was practically time to pick him up!

I have to say that when Tyler graduated from pre-school at the end of June, with Grant and I both disabled, I didn’t think we were going to “make it” with him being home all summer.  It truly was the first summer he would be home with us, as he was born in September so by the next summer, he was already in daycare.  How was I going to hide my pain from Tyler? How would Grant lay on the couch all day, crippled by depression and anxiety?  How would I hide my meltdowns when I got bad news, from either the Social Security Administration or another diagnosis?  How would I just make it through the day?  There was just NO WAY this was going to happen.  But it had to, because Grant and I could no longer afford daycare/camp/preschool, or whatever you want to call it.

I was not optimistic.  I thought that we were going to have to end up putting Tyler in some sort of camp, that the money was just going to have to be found, in some way.  That this was just not going to work.

With just two days left until my son starts his first day of kindergarten, I can now say, “We did it! We made it!  Woo hoo!”  

I feel really good and proud about Grant and I s’ abilities to stretch our limits to the max.  I really think we gave Tyler a good summer.  A big worry that I had was that Grant and I both do not well in the heat.  Depending upon if you want to look at it as a blessing or a curse, Tyler, due to some of his sensory issues or perhaps his OCD, abhors water; the beach and the pool, and my pediatrician told us not to force him into the pool or the ocean, that it would be doing more harm than good.  So, I guess you could say, none of us were into many outdoor activities during the super hot, poor air quality summer of Central New Jersey.

When Tyler was not at camp, which again, was most of the summer, we lived at the library.  We are fortunate enough to be in a township that has one of the greatest local libraries as far as children’s programs go.  Tyler “read” to a therapy dog, which got him over his fear of dogs (!), joined the Lego Club, did arts and crafts and “took in” an hour long program on butterflies.  All free!  He also did karate.  We do plan on continuing library programs and karate, but we will see how it is all going to work once Tyler’s school schedule starts.  We are blessed with full-day kindergarten!

I was also worried about how Grant and I were going to get our work done.  Grant, if you do not know, is a freelance writer, I am a voiceover artist and this little blog that you are reading requires a lot of attention, more than I would have ever imagined.  Grant and I definitely made less money this summer because we had less time to devote to our work, but any decent camp around here is about a grand a month (I know your mouth might be hanging open if you do not live in the tri-state area of New York, New Jersey or Connecticut) so we were probably still ahead of the game.

My routine would be to get up when Tyler got up, make my coffee and get right on the computer, of course tending to Tyler’s needs like a breakfast snack, as he doesn’t like to eat a lot when he wakes up, breakfast, and any bathroom…”issues” that he needed help with.  I would also try to throw in some housework, a laundry here, a dishwasher run there.  I worked to 1:00 every day and then it was quitting time with me devoting the rest of the day to hanging out with Tyler or getting out to do something.  We did see The Cars 2 (Tyler’s first movie!), Winnie the Pooh, and The Smurfs. Tyler did get outside during camp, and he did go to the park a few times with my mother and Grant and even me!

I have to say that overall he was very good for someone who is about to turn five, with the exception of him still needing to learn that when we are on the phone you do not talk to us. That “when I hold up my hand like a stop sign, it means you should not interrupt me” solution is not quite working out.

Because we didn’t have many plans, except for doctor appointments and special programs at the library, we had a lot of flexibility so I was able to keep what I like to call “Lupus hours”. That is, sleeping when I want to sleep.  Grant was for the most part able to take over when I needed a nap or be up when I needed to go to bed for the night at 8:00.  Grant likes to joke that due to our disabilities we make one full parent together, but I do think we managed pretty well this summer!

And now with just a holiday separating us from when Tyler begins kindergarten, I am beginning to get misty.  I am actually going to miss having my child home so much with me, because at almost five, he is able to do a lot of things by himself, and with some exceptions, he is a joy to be around. Don’t worry chronic moms, or just moms with young children…it DOES get easier!

Those “back to school blues” are kicking in.  Physically, Autumn is the worst time of the year for me because of the drastic changes in weather.  And then Autumn leads to Winter, which is a bummer all around.   And now, my little boy is starting what will be the first of I hope at least 17 years of school for him.  He is nervous, and so am I.

I guess you can say that for the three of us, we are all going back to school.

 

 

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Wrong Bus

Posted on September 1, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt #1.) Write a post about a childhood memory as if you’re in that moment again…from the perspective of yourself as that child.

I am in kindergarten now and I am going to be five in October!  Kindergarten is really fun!  My school is really big though and there are a lot of children who are a lot older than me.  It feels a little weird being one of the shortest kids in the whole school!

After school ends we all have to line up in our auditorium to get on our buses.  I think I am in the right line, I think this is my bus but I don’t remember the number and I can’t really read my bus pass.  I don’t know anyone on my bus yet.

I get on the bus.  I don’t know the bus driver but he is a big fat guy named Charlie and he is very jolly!

I am riding on the bus.  I know I have not ridden on the bus that many times but nothing looks like my neighborhood.   It’s nicer here, there are houses and big dark green trees, bigger trees than where I live.  My bus stop is kind of far from where I live anyway so it is probably going to be okay though.

More and more children are getting out and now I am getting scared.  I don’t know what to do!

I am the LAST child on the whole bus.  Charlie stops the bus and says, “Last stop!”

“But-but..this isn’t where I live!”

“I am sorry little girl, this is the last stop on the line.  I have GOT to let you off here.”

The bus door is standing open.  I get up and walk down the stairs and out the door.  Charlie drives away.

This neighborhood is pretty but it is not MINE! I DON’T KNOW WHERE I AM!

I am crying now on the corner.  I am so scared.  I know my mommy is waiting for me at MY bus stop.  How will she find me?  How am I going to get home?

Suddenly a girl comes up to me.  She is old, like a teenager and asks me why I am crying.  I tell her BECAUSE I AM LOST!  I am crying so much, I cannot help it, I am so scared!  She leaves me and a minute later she brings out her mommy and I tell her the same thing.  She asks me my name and address and I know it, I have it memorized even though it is really long with lots of numbers!  She takes me into her house, it is nice there, and she puts her arm around me to help me stop crying.  She is a nice lady.  She tells me she is going to call the police!  But to not worry, she is just going to let them know that I am lost.

The police pick me up.  I know not to be afraid of policemen!  I am going to be okay!  I am going to be going home!

When the policeman brings me back to where I live I see my mommy and all of my neighbors waiting.  “Oh, Emily! Emily!”, my mommy is crying and she hugs me hard but why is she crying because now I am not lost any more?

(The above story happened to me in 1974, in Queens, NY, when you didn’t hear about these kinds of things on television or read them in the newspaper, and you really should have.  NOTHING ever happened to the bus driver.  I know because one year he drove my bus route, and for a while I was afraid of him.  The school, the teacher that should have made sure that four-year-old me was getting on the right bus, no one was held responsible.  I know it was 1974, but I guess back then the school was the Almighty and parents were not as involved with school policy like they are today.

I realize how lucky I was, that I might not be here today.  Anyone could have found me on that corner.

As you can probably tell from my writing, that story still brings fear to the little girl that is still with me somewhere, and I do still tear up whenever I hear one of these stories now.

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