Mama Sick

On Saturday I took Tyler to the pool for the first time this season.  Prior tries had been a disaster, with Tyler being either too cold or too scared to go in or let go of me.  But now at three-and-a-half, I figured if he didn’t start enjoying the pool experience there was some kind of issue going on.  My husband didn’t even want to go because he couldn’t bear to see Tyler cry.

It was hard for me to go alone but I was determined to take him.  I had gotten him a fish “floaty” and as luck would have it, a slightly younger boy had the same one so I think that gave Tyler some courage. We have been having a bit of a heatwave and the pool was as warm as an outdoor pool could get, too.

It took him a long time to get in.  I’m one of those who prefers to just jump right in but Tyler enjoys the step-by-step torture method.  I wasn’t going to force him to do anything so we went in gradually.  He kept looking at the boy with his fishy floaty and his mom having a good time, and finally he let me put it on him and get him in the water, and finally he stopped clinging to me like a monkey and held his arms over the floaty and let his legs dangle free.  Then I was able to take him for rides and bounce him around.  I was able to do almost everything that the other mom was doing except throw him up in the air.  I needed for him to be weightless in the pool so that I wouldn’t hurt myself.

It was one of those times where I felt like almost a normal mom.  I said, “I’m having one of the best times I’ve ever had with you, Tyler.”  “Me, too, Mommy.”

After almost an hour and a half in the pool we ate lunch and then he was just like a normal kid where you couldn’t get him to leave the pool except by threats of never coming back.  But I knew I had had all I could handle and wasn’t ready for another round.  I told him we could come again every weekend in the summer if he wanted and he said, “Really?”

I didn’t bring a camera, anticipating the worst, but it was definitely one of those times where I wish I had.  It will forever be in my memory though, the first good pool day I had with my son.

…New Jersey Moms Blog today, talking about our experience with Tyler at the Pediatric Neurologist.  I hope you will take a look!

Disclosure:  I received a free copy of this book courtesy of the Silicon Valley Moms Book Club.

Girl in Translation is loosely based on author Jean Kwok’s family’s experience in coming to New York City from Hong Kong.  Eleven-year-old Kimberly Chang and her mother come to New York with visions of the Statue of Liberty and Times Square.  Instead, they wind up living in an apartment with roaches and rats.  Her mother works in a sweatshop, with Kimberly having to help after school along with all the other workers’ children just so the work given to them can get done.

Kimberly was at the top of her class in Hong Kong but she speaks very little English.  Still, she works hard to learn the language and her intelligence hasn’t left her.  She knows that if anyone is going to get them out of that apartment and to a better life, that it is she.

This book showed me that there is “another America”, for those who were not lucky enough to be born here.

Sweatshops in America?  Can this even be?  Well the answer is yes.

Born in America or not, this wonderful novel speaks of the universal themes of life; growing up and finding you way.  Going through school and learning how or where we will fit in, those embarrassing moments that you can look at now without scars, but moments all the same that you will never forget. The giddiness and heartbreak of love, figuring out what we are going to do with the rest of our lives.  Kimberly goes through them all, and we cry with her and triumph with her as well.

This is a book that will stay with you for a long time, and change the way you think about your life, and others whom we don’t always give as much thought to.  It’s a great summer read that you won’t want to put down, but so much more than that.

Want to win this fabulous book that was read only once by a woman who has no contagious diseases?  Leave a comment here, and give yourself another chance to win by retweeting my tweet.  A winner will be chosen at random by midnight (12:00 a.m.) on Friday, July 2nd.  Good luck!

I read Girl in Translation by Jean Kwok as a part of the Silicon Valley Moms Group Book Club. This post is inspired by this book.

Eleven-year-old Kimberly Chang and her mother emigrate from Hong Kong to New York with visions of the Statue of Liberty and Times Square.  Instead, they wind up living in a condemned apartment with roaches and rats.  Her mother works in a sweatshop, with Kimberly having to help her after school just so the work given to her mother could get done.

Although the semi-autobiographical novel is told from Kimberly’s point of view, I found myself identifying strongly with her mother.  “Ma” was a music teacher in Hong Kong in a school where her husband was the school principal.  They lived a life that was considered to be a good one but Kimberly’s father died when she was three-years-old.

When I was pregnant with Tyler, my husband and I had the whole world.  We were both working, had a large savings, and were debt-free.  There were no money worries when we were preparing for Tyler’s birth.  My being laid off while I was on maternity leave turned into an unexpected opportunity as I accepted a position in 2007 that paid a lot more than my previous one.

I had been chronically ill with Rheumatoid Arthritis since 2003 but was able to work, even though there were some difficult times.  But in 2008 when I was diagnosed with Lupus, working just became too much for me and I had to quit.

Like “Ma”, my dreams and desires for my son are still there of course, but a lot more unreachable.  My worries about money are ever-present and the financial assistance I expected to provide for my son for college is now unimaginable.

As with Kimberly there will be a lot of pressure on Tyler to do as well as he can.  A lot will fall on him for him to make his way in life.

And I, like “Ma” will keep going as best as I can, and hoping that my best will be enough for my child to succeed.

It had been a while since I had visited my Father.  For Christmas and the date of his birthday it had just been to cold for me to stand outside but I know he understands.  Today I took Grant and Tyler.  I’ve taken Tyler before but he’s been too young to remember going or sometimes he was just napping too heavily for me to wake him up and take him over to his grandfather’s grave.

This morning I had told Tyler that we were going to visit his Grandpa in Heaven.  He’d still be up in Heaven and couldn’t talk to us but there was a little “sign” that had his name on it and he could listen to whatever we said to him.  He could tell him anything or ask for anything and that it was the best place to talk to him.

While I drove the forty minute drive, I thought about how my dad used to take us to visit his parents’ graves when we were smaller and went to his home state more often.  I wonder now how my father felt taking his children there and just being there.  I remember him praying, but was he sad or was he just paying his respects?  Not that my grandparents’ were bad people, but my father was one of seven children and he couldn’t have gotten the attention paid to him that my brother and I received.

When I got to his gravesite I immediately started to cry.  So many people had put balloons on their Fathers’ graves.  “Happy Father’s Day!”  “You’re the best, Dad!”  Balloons meant for those fathers who should be at barbecues or Sunday Brunches.

I hadn’t brought anything for my father, but I knew he wouldn’t want me to spend any money. I could just picture him saying, “Now why would you spend money on something I can’t use?”, and shaking his head at me.

Tyler had dozed off.  Grant went over first.  Then I woke up a cranky Tyler and told him we were here. Tyler stumbled over and asked, “Well, where is he?”  And I had to explain the whole thing again to him.  I told him to say I love you, grandpa, and that he could ask him anything.  Tyler looked up in the sky and said, “I want The Flash!” (The DC Comic Superhero) I sent him back to the car and sat down at my dad’s grave.

“Look how beautiful your grandson is”, I said.  My dad had never met him.  I was going to ask my dad for a big favor.  He had granted me something very special once before.  I told him how badly Grant and I were doing healthwise.  I’ve been sick for seven years so I wasn’t going to ask for a miracle.  I told him that our money was running out and I didn’t  know how much longer we could last without getting our disability, or some sort of break.

I told him that Tyler was beautiful and smart and loving and I wanted to have the resources to nurture those gifts.  I wanted a backyard for him to play in and maybe enough money to take him on vacation once a year, to anywhere.  I wanted to be able to give him the kind of childhood that my brother and I had because of him and I asked him to ask God and Jesus to help us.

Then I told him something that I haven’t even told Grant yet.  My mother has made the decision to be buried with her new husband and it breaks my heart that my dad is all alone in his little grave after 35 years of marriage and taking care of all of us.  I told him that I was going to tell Grant that if I were to die suddenly, be it in a car crash or if my Lupus worsens, that I would like to be by his side.  I told him he was the best father he ever could have been to a child.

Then I said some prayers, The Hail Mary and The Our Father, just as my dad used to do for his parents and said goodbye.

For those of you in the blogoshere who do not know yet, the blog I am a part of, Silicon Valley Moms Group, has decided to close it’s network of 13 cities and over 400 writers.  I am saddened, because for the last two years plus, I very much enjoyed being a part of this venture, writing for New Jersey Moms Blog, and I realize what it has meant to me.

Let’s start at the beginning.  After I had to stop working because of  Lupus, my mind stopped thinking less technically and analytically, and started to think more introspectively and creatively.  And with Tyler a little over one-year-old, I certainly had a muse.  I learned that NJMB was looking for writers and contacted Jill Asher, one of the founding members.   She told me to send over two posts from my blog and she would let me know.  Only I didn’t have a blog.  And I had never written anything before.  I quickly wrote two essay-like pieces that had been running around in my brain and sent them over and was surprised when Jill said she would take me on.  A year later I had this blog up and running.  So I kind of did things backwards.

While my blog is meant to be mostly a day to day about my life as a chronically ill mom, my posts on Silicon Valley focused more on what a woman went through when a child entered her life and as she raised him or her, or more.  I wrote about things like potty training and getting Tyler to sleep in his own bed, and Postpartum Anxiety.  It was a link to the world where everyone is just a mom, dealing with their children at different stages.  Some posts, of course, focused on what it was like to have Lupus and raise a child, the financial difficulties that come with chronic illness, and the pain I feel about not having a second child because I am sick.

I will miss having a venue to educate other moms about my struggles, and I will miss the opportunity of being able to share the joys and sorrows of being a mom with a larger audience.

Most importantly, I will miss the amazing women who ran SVMG and the writers that contributed. And I want to thank the group for giving me my start in the blogging world.  I look forward to my future in blogging.

I applied for Food Stamps on March 18th.  There was a lot of paperwork required, just like any government-oriented program.  I got a letter dated April 20th saying they needed more information and if I didn’t get it to them in 30 days I would have to apply all over again.  The information they needed included self-employment packets for Grant and I s’ meager freelance work and copies all over again of our checking and savings account statements.

Maybe it doesn’t sound like a lot to do in 30 days but it was tax season (our county had an extension) and I had received another load of paperwork to do for disability.  Plus everything else a normal mom has to do in between being sick.  I worked like Hell to get everything done in time, it was extremely stressful.

On May 20th I personally went to the Board of Social Services and dropped off what was needed to complete the application.  It was the day of the deadline.

A few weeks went by and I began to allow myself to get hopeful.  No rejections in the mail, no more letters needing more information.  Finally today I decided to call my caseworker, hoping for some good news.

I was surprised to get her on the phone.

“Oh”, she said, “Your application was denied because you missed the deadline to get the rest of the information in.”

“Wh-what?  I delivered the information in person on the day it was due.”

“Your information was due on May 18th and you got it in on the 20th.  Applications must be completed 60 days from your application date which was March 18th.”

I have never done this in my life but as I tried to explain my side, I started to cry.  “Excuse me, but nowhere in this letter does it say…(I am having trouble getting the words out because of my sobbing)…anything about a 60 day period.  It just says I have 30 days from the above date which says April 20th to get my application completed, and I did that.”

Now you’re probably getting a picture of some spinster-ish, uncaring bitch, but my caseworker is actually an attractive woman in her late 20s/early 30s.  I couldn’t believe I was crying to someone younger than me!

“Okay, take a breath, please…Are you okay?  Look, I could see where you might have gotten confused.  The letter should have been dated April 18th, but that was a Sunday, so your letter didn’t go out until Tuesday and that’s why it says the 20th.”

I was so angry but all I had was more tears.  “But, I’m not confused, there is a MISTAKE in your letter to me.  I should not be denied because there was an error made on YOUR part.”

“Emily, okay, okay.  Look, let me take a look at your application.  It’s still on my desk but I have never looked at it because it was automatically denied.  I will take a look at it and call you back today, I promise.”

“Th-thank you.”

“Are you going to be okay?”  I said I was and we hung up.

She called me later and said that she looked my application over and they were going to keep it active. She asked me some questions and said she needed some more specific information about my freelance work.  People just don’t seem to get freelance for some reason, they can’t grasp the unpredictability of it all.

This was one of the more embarrassing moments of my life, but I just couldn’t help it.  This is so important to my family, especially for my little boy.  I will starve before I would deny him anything.  I can’t believe we have to wait for even more time to see if we will be accepted into the program.

Tyler is a Spiderman freak and is pretty hard on Spidey and his villains.  All of them have held up pretty well except what he refers to as “Shiny Red Spiderman”, the one he plays with the most of course.  We’ve have to buy him a few Spidermans.

What happens to the figures is they begin to stretch at their joints and eventually a limb breaks off.  We have usually just thrown them away.  The other day a figure started to stretch. Tyler showed him to me and I started to walk him over to the garbage.  He said, “Mommy, could you not throw Shiny Red Spiderman away?  Can you just put him somewhere?  It would make me feel sad if we threw him away.”

I said, “Of course, honey” and put Spidey in one of his drawers.

Our exchange made me think of myself.  A mommy whom he loves, whose body has joint issues and a lot of other things wrong with it, with the possibility of more things going wrong in the future.  I was proud of my little boy, who is already so compassionate and loving that he could not allow his little damaged toy to be thrown away.

Okay, not exactly, but I am sure as Hell pissed off!  I have kept track of my referrals for my Orencia infusions.  Two months prior to my last referral in May I notified the staff of the status.  They’re all like, “Yeah, we’re aware of it.”  On my last visit in May I told the Office Manager that the next time I came in June I needed a new referral.  She was like, “I’m on it.”

On Thursday I got a call from one of the office admins who said she was calling me to confirm for my Monday appointment for Orencia.  I said, “Oh, so everything is fine, I have received the authorization?”  “Um, well no not yet but “Tracey” has made all the necessary calls and is waiting to hear back.”  “But it is only two business days until my appointment.”  “Look”, she said, “I’m calling YOU to confirm that YOU can make it on Monday.  If there is any problem we will call you before your appointment.”  She couldn’t have been any nastier.  I’m thinking Well, I’m confirmed, but my medication is not.

So my appointment was for 1:00 today.  I walk in at about ten to one and “Tracey” sees me and “Uh-oh” is written all over her face.  She never got the authorization.  She starts to explain to me and I said, “Look, I received a call from your staff saying that my appointment was confirmed and that if there was any problem, YOUR office would call me.”

But what I really wanted to say was, “Fuck you and your goddamn office staff!  Is my time, gas, health and energy not as important as yours?!”  I wanted to scream.  But I can’t because I need them to make copies for me, appointments, get authorizations, etc.  That’s why I am screaming here.

“Tracey” made all these calls (which should have been done Thursday, Friday and today before I was here) and an hour later I got my treatment.  Which completely threw off the rest of the afternoon.

I’m not only just venting.  Sometimes I just can’t stand dealing with office staff’s’ rude attitudes and I get intimidated into not calling.  But ultimately, they are idiots, and I should have called today to make sure everything was set, even if they angrily told me that everything was confirmed.

I spoke to my IV nurse about what happened and she told me this is hardly the first time this has happened in this office.

So lesson learned, even if I feel nervous due to my anxiety and to staff that is rude anyway, I MUST make these follow-up calls, because when it comes right down to it, the only person that cares about the patient is ultimately the PATIENT.

…New Jersey Moms Blog today, talking about taking your children to the circus despite animal cruelty.  I hope you’ll take a look!