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

In Expecting Adam by Martha Beck, Martha and her husband must let go of all they have learned from their Harvard education and open their hearts and minds when they learn that Martha is five month’s pregnant with a baby with Down Syndrome.  Martha especially must face judgements from the Harvard academia and even her doctors when they are shocked to learn that she has decided to keep the baby.  Along the way, Martha discovers a way of living and thinking about a life that not only can be just as good, but is even more rewarding than she could ever imagine.

Before being diagnosed with Rheumatoid Arthritis (RA) in 2003 at the age of 33 I, while no Harvard graduate, had always excelled in everything I did.  In 2000 I had decided to give up my on-air radio personality career and go in a completely new direction, taking a job with no experience necessary, in order to train as a Recruiter.  I enjoyed the business, learning everything I could about recruiting and of the niche I was recruiting in.  In a couple of years my position changed to where I reported directly into the President.

Two months after I got married I felt the first pain of what would wind up being the rest of my life, ironically while I was on the treadmill in the gym.  It took me six months to get a diagnosis of RA, in between which my feet were swelling so badly I would have to take ice packs to work and even on business trips.  I worked in this manner for a few years, sometimes just being at my job numb from so many pain killers.  I tried to never miss a day, even if that meant vomiting in the morning and then getting ready for work.

In 2005, I appeared to be in remission, and feeling that I was in the best health that I would ever be in, my husband and I decided to try to conceive, which we were successful at on the first try.  My pregnancy went very well from a Rheumatological standpoint and I continued to do well until my son was about a year old.  My pain started to increase by the day, my hands swelling.  I would fall asleep driving to and from work, I was lucky I didn’t kill myself or anyone.  I was swallowing narcotics two at a time just so I could feel some relief from the pain. But I was a full-time working mother and I thought it was just my 6 a.m. to 11 p.m. hours of being a mommy and working.

Through the five years I had been working with my diagnosis, and with the help of the internet, I had seen hundreds, even thousands leave their full-time jobs.  That was unthinkable to me.  I was the main breadwinner in the family.  We were going to buy a home, help our son with college.  Not working was just not possible, not in the way I wanted to live my life.

In 2008 I worsened.  At the same time, my satellite office of the new job I had been at for a year was closing and I was laid off in March.  In July I got my diagnosis of “Lupus with RA overlap”.

I never went back to work.

And I lost everything.

My 401K, my son’s college fund, my credit rating.  In fact, this month the woman with a credit rating in the high 800s is filing for bankruptcy.

I always used to think “those people” with chronic illness who stopped working were just not as strong as I was, that my will was mightier than theirs.  That their families did not depend on their salary the way mine did.

Turns out I was wrong.  It wasn’t that I wasn’t any better than those who had just “given up”.

I just hadn’t become sick enough yet to the point where my body said, “This is it.  I am not going to do this any more for you.  I just can’t do it any more and I won’t.”

People wonder what I do all day, especially while my son is in school.  What I do all day is…be in pain…have trouble walking…thinking…sleep and rest.  I go to doctors, I apply for disability which is akin to writing one’s dissertation.  I wait, so far for over two years to see if the United States government decides to declare me disabled.  I file paper work for WIC and Food Stamps, things I never dreamed my family would be on.  I advocate for myself and for those like me.

At 42 years old, this certainly isn’t the life I thought I would be leading.  But with the pain, with the worry of living under the poverty line, there is also joy.

I get to spend more time with my child than most working mothers do.  I am home when he comes home from school and I am always there to watch my child walk in the Halloween parade or to partake in the Mother’s Day tea.

I get to write.  Something I never knew I wanted to do and something that I never knew I could.  Was my brain so full of thinking about work that there was no time to let my creative side be free?  Would I have ever even become a blogger if I had not become disabled?

And finally, I get to make a difference in people’s lives.  For those mothers who are sick like I am and for those who are mothers of special needs children.  For those who are mentally ill and need a voice.

Life certainly did not work out the way I planned it, but it is certainly not all bad.

The post Forgetting Everything I Knew first appeared on Mama Sick.

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

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

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

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

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

5. That he curses at my husband and I.

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

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

8. That I am scared to death for him.

The post What You Don’t Know About My Son… first appeared on Mama Sick.

I first lamented the fact that I have grown too heavy to where nothing anywhere near appropriate would fit me for the meeting except for capri pants.  Except it was 63 degrees and raining.  With my swollen feet, all I have still been wearing is flip-flops.  I debated going to the store that day but decided it would be too hard on me physically to have to rush to buy proper attire.  A fancy blue t-shirt, capris, and sparkly blue “dress” flip-flops.  Lip gloss and earrings.  This was as good as it was going to get.

Grant and I had a lot to say and we knew we had to do a lot of listening.  Whenever I have to do something stressful like this, I sort of go out of my body and the “actress”, the strong and confident Emily takes over.  The one who won’t cry and freak out.  After things like this are over, I come out of them thinking “Who was that woman?  What happened in there?”

It was Grant and I, and six women ranging from the Vice-Principal to Tyler’s teacher to three Support Staff teachers; teachers who assist the regular teachers with special needs children, one of which had already been assigned to Tyler.  A bit shocking, something that huge and we have never been told this?  Tyler had spoken to me about a new teacher in the class but I had just figured it was a teacher’s aide, never dreaming she was actually Tyler’s teacher!

The support instructor read her report about my son.  It began, “Tyler is an imaginative kindergartner…” and was mostly negative from there except he had higher math skills than the average kindergartner.  It said that he frequently trips in school, especially in gym class and that he bumps into the other kids.  That he cannot grip a pencil or other writing implement tight enough or press hard enough and so he writes his name at a level far below other children his age.  That when she tested him he was very fidgety.

The worst parts of the report is that throughout the day Tyler makes explosive sounds and uses his hands as if he is playing with them.  She said that she believed Tyler has a secret language known only to himself!

And then his teacher said that Tyler hates certain children but will not tell her why and that today he told another child that he was going to cut off his head.

Some of the things she said about Tyler I was ready to rebut, to explain.   A lot of it was worse than I thought.  We have daily problems with Tyler saying he hates us and he wants to kill us, I didn’t know that this was starting to happen in school.

Grant and I had taken notes.  Grant talked first about Tyler’s OCD, Anxiety and Tourette’s Syndrome and about how some of these things may be contributing factors, such as his poor handwriting and so-called poor gross motor skills.  He also told the team that Tyler has been bullied twice at two different daycares.

Then it was my turn.  I told him that he had no confidence, he knew he was not as good as me or even some other children and he was reluctant to try.  How at home he would yell at me, “I will never be as smart as you!”  How he knows when he is being tested, examined or evaluated and gets very nervous.  I told him how he plays games on my iPhone, uses an adult scissors and cuts well, and uses the touch mouse on my MacBook Air so the poor fine motor skills are not adding up at home.  I explained how in preschool when he was uninterested in a lesson how he would stop paying attention, go play and yet still learn the lesson because he was still listening.

Grant and I both said that we did not doubt that Tyler was making explosive noises but that he does not do that at home except when he is playing and we had never heard him speak anything but English.

We told them we were aware of Tyler’s verbal attacks and that we have an appointment scheduled for a child psychologist.

As Grant and I talked, I could see the team’s faces; lightbulbs going off in their heads, and all of them taking furious notes.

Unfortunately we were out of time!  We all agreed that for two weeks his teacher and his support teacher would work on trying to minimize Tyler’s disruption to the class and that we would meet again.  The Guidance Counselor told us she would be happy to start working with Tyler now that she had a clearer picture.

That night we received a call from the woman assigned to be Tyler’s Case Manager.  She said that she and the team were blown away at how Grant and I had contributed to the meeting.  That more than half the time the parents do not even show up and if they do, they don’t say a word.  She thanked us for being willing to share so much of Tyler’s background and that this was one of the most productive meetings she had ever been at.

Grant and I were surprised.  Aren’t parents supposed to show up to these meetings?  Aren’t they supposed to say things that can clarify what the teachers are seeing in order to better understand their child?

I don’t give ourselves any extra credit for “coming off” well at the meeting.  It’s just what any good parent would do for their child.

The post The Meeting With the School first appeared on Mama Sick.