Monday, February 27, 2012

My Moods & Some of My Favorite Movies

I'm thinking about retiring. I know, I'm a mostly stay-at-home mom, but holy crap! I had no idea this could be such hard work. The worst part about it is that I get very little recognition. No one is paying me a salary. No supervisor comes in to observe me and tells me I'm a natural. Sometimes, a little cherub gives me the smile, hug, and kiss that I need, but they feel few and far between lately. Instead, I'm overwhelmed by repetitious tantrums, screaming, and crying. I can't wait for this phase to pass.

Today I am really worn out. I'm experiencing a sad kind of laziness. I've listened to Taylor Swift's song "Safe & Sound" repeatedly this morning. It's haunting and it's stuck in my head. I'm not sure if it's improving my mood or making it worse.

Though I haven't felt it today, there are some mornings when I feel a little like Juliet as played by Claire Danes when she goes to the priest and screams (in her amazing, Claire Danes way), "I long to die!" Okay, so that's an exaggeration. I feel a little bit desperate like she is in that scene, but without the gun or star-crossed lover.

Then, after seeing so much sadness and difficulty in the world around me, I feel a little like Leeloo towards the end of the 5th Element. She's supposed to work as the ultimate weapon and save the world, but she breaks down and wonders, "Why?" What good is there in the world worth saving?

Of course, there's the ultimate solution to all of these issues. Love. It's the reason Romeo and Juliet live and die. It's the beauty that saves the world. 
"Above all things I believe in love!"
"Death cannot stop true love..."
Sometimes, I have to remember to look for and focus on love. It is all around me and I cling to it when I feel like I'm about to run out of strength. 

(Thank you, Google, for all of the lovely photos.)

Thursday, February 23, 2012

Cadbury Cream Eggs are Delicious.

I'm still on that chocolate kick. I blame this pregnancy, but the truth is that I have a wicked sweet tooth all of the time. I've just been a little more of a sugar fiend the past few months.

16 weeks. Emma took this photo. Not bad, eh?
We hit the 16 week mark and I had an appointment to hear the baby's heartbeat today. Thankfully, it has a healthy little beat, so I'm feeling happy. I still don't really look pregnant and haven't gained any weight. However, my guts are getting squished upwards and I've spent the past week either wearing pajamas, workout pants, or unbuttoned jeans. I decided it was time to bring the maternity clothes in from the garage. Today, I'm wearing jeans with a stretchy waist. Much more comfortable and much less frumpy. Our big ultrasound will be on March 19th and we'll learn the gender then, if baby cooperates. Wow. I'm going to have two kids before this year is over. Craziness. 

Notice the kicking legs.
Speaking of craziness, we've got plenty of that around here already. I don't know if Emma just feels poorly because she's getting over a cold, but she's been quite the cranky child this week. I suspect that someone told her about this thing called "The Terrible Twos" and she decided to try it out. Seriously.

Ah, the crying.
If she's not throwing a tantrum because she wants me to pick her up, she's throwing one because she wants to go somewhere, or doesn't want to go somewhere, or wants a different toy, or wants to help me feed the cat, or doesn't want me to leave the room. Should I go on? She's also decided to be a slow, horrible, eater. I have to keep popping food in her mouth, discreetly so she doesn't throw a tantrum, to get through a meal. It's wearing me down.

Good thing she's cute.
Good thing my pregnancy is uncomplicated.
Good thing it's Easter candy season. 

Wednesday, February 15, 2012

Drowning My Worries in Chocolate

Have you ever been in a situation where something is obviously wrong with yourself or someone you love, but you can't figure out what it is? There's a visible problem, but no one can tell you why it's happening, what started it, or when it will go away. A certain amount of terror starts to creep up your spine as you realize that no one has a clue as to how to help.

I'm afraid that's something that I'm going to be dealing with over and over again as a mother. Especially, as a mother of a chronically ill child.

Emma has a rash. It's been there for about a month. We tried antibiotic ointment. Nothing. Topical steroid ointment. Nothing. The really fantastic thing is that it has spread to a larger area of her body and has changed it's appearance. Em's amazing doctor doesn't know what it is. Her amazing rheumatologist doesn't think it is a reaction to her medication. A dermatologist took a peek at it today and doesn't know what it is. I'm taking her to a pediatric dermatologist later this week and am praying she knows what is going on. If no one can explain it, no one can help me fix it. I can't stop thinking that it is some complication of her JIA.

Add to that the recently released research results (That was one amazing alliteration.) that children with JIA have a higher risk of developing cancers than their healthy peers. Great. Then remember the challenges that go along with the fact that I am injecting one harsh chemo drug and one biologic immune-suppressing drug (that may increase her risk of cancer) into my 26-pound toddler each week, all in the name of controlling a disease that could otherwise destroy her body.

There's nothing that makes me feel more pathetic than being completely incapable of helping my child.

Please also remember that I am full of pregnancy hormones. That explains why I kept crying today after getting "I don't know" and a bag full of toxic medications from the doctor's office.

And that, my friends, is why the gigantic container of chocolate in my kitchen has several less pieces in it now than it did this morning.

Monday, February 13, 2012

24 Months. The Big Two!!!

Wow. My kid is officially two years old.

Emma is doing well. Her arthritis is pretty well under control, but it's still around. She's talking more and more every day, piecing words together to make little sentences. She loves music and sings a ton, which is highly amusing, unless Barry and I are trying to have a conversation in the car and we can't hear each other over Emma's musical endeavors. Still no sign of her final baby molars. I'm trying to teach her how to brush her teeth with toothpaste but she keeps swallowing instead of spitting. She always wants to help, from sweeping the floor, to feeding the cats, to putting away groceries. It's a lot of fun.
She is sassy, funny, adorable, and the light of my life.
She wouldn't hold still or smile, so I tickled her.

Mmm... Pizza!

We celebrated on her actual birthday, Saturday the 11th. I don't know why, but I apparently like throwing big birthday parties for her. For both her first and second birthdays, I invited a bunch of friend and ended up with about 30 people at my parents' house to celebrate. If we tried to fit that many people (and their accompanying toddlers) into my house, it would be a very close, crowded disaster. I love seeing friends from all different areas of our lives together for one event. Emma went crazy with excitement. So many friends all in one place was definitely an enjoyable experience for her too.

The kids played with toys and chased each other in circles. The adults stood or sat, talked a bunch, and ate. It was a very low-key event, but very enjoyable. Thank you, Coscto, for supplying me with lots of delicious food!

Happy 2nd Birthday, Emma!!!!!!

Thursday, February 9, 2012

"Panzees Scared"

Today is my wedding anniversary. Nothing says, "I love you" like waking up to find a giant vase of candy on the table. Thank you, Husband.

We're experiencing another uncommonly lovely day for February and this weather must be enjoyed. That's why the Bean and I headed to the Oakland Zoo today. An annual zoo membership was the best Mother's Day gift I've ever bought myself. Today's visit was great. I like to get there right when the zoo opens at 10 A.M. so we can make it around to almost every animal by lunch time and get into the car in time for Emma's nap. The only problem with my plan is that every other family with a toddler has the exact same plan, so the zoo is full of mommies and strollers. We fit in just fine.
When the chimps get noisy, Emma says, "Panzees scared."
Here, Kitty Kitty!

I am celebrating more than just four years of marriage today; I am also celebrating three weeks since Emma has been taking her oral anti-inflammatory only once daily instead of twice a day. The three week mark means we can stop giving it completely, since she's been doing wonderfully at the lower daily dose. Yay! One medicine down! Of course, Em's still getting the scary injectable meds once a week, but that's just how it's going to be for a while.

It's hard to see, but there is a meerkat to the right of Em on the other side of the window!
Here's the really exciting part: During our three hour adventure at the zoo today, Miss Emma walked the entire time and never asked to be picked up or ride in the stroller. That's the first time this has ever happened! Granted, she's getting older, stronger, and more stubborn, but she's also more comfortable than she's been in a long time. Thank goodness. Part of me worries that she'll be sore tomorrow. I wonder if I should have made her take a break and ride in the stroller. Part of me is grateful that she had the energy to be a crazy, little kid.

It's been a great day so far. Happy anniversary to me.

Wednesday, February 8, 2012

February Springtime

I need to paint a quick picture so that I don't forget.

Emma, Torah, and I took a walk this afternoon with my friend and her baby. On the way home, I pushed the double-wide stroller while Emma walked along beside it. Thankfully, Torah is SO GOOD about sitting in a stroller. She enjoyed her ride, wiggling her feet and watching the world go by. The sky was a clear, bright blue. Even though it's only February and it was cool and rainy yesterday, the sun was hot and shining brightly today. Many of the trees around here have been suckered by the mild winter and are showing off their blooms that shouldn't be here until Spring.

As we walked by a group of trees full of white blossoms, Emma ran ahead of me. I watched my remarkable, little girl frolic under the blue sky and white flowers, felt the warm sun on my skin, and knew that the moment was perfect. My wee-one, with her thin blonde hair, denim overalls, and pink Converse shoes*, was the image of childhood joy.

Sometimes I complain about the little complications in life. Today's sunny moment reminded me that I have so much to be grateful for, so much to enjoy.

*The Converse are hand-me-downs. While I do appreciate the adorableness of such things, I am not one to spend money on brand names for my toddler who will only take a few minutes to outgrow said expensive purchases.

Saturday, February 4, 2012

Outspoken? No, But I'll Speak Out.

Sometimes, I'm shy and maybe even a little insecure. I stay away from uncomfortable conversations or choose to keep my mouth shut if I don't know how my words might be received.

Other times, I'm bold and have no problem explaining how I feel. This is especially easy for me if I know that I am speaking up and sharing the general opinion of a group. I can't even remember how many times I was the spokesperson for Cohort 80 during my Teaching Credential Program. The majority of the class would be muttering the same complaint, wondering the same question, privately disagreeing with the professor in the same way, and I would be the one to speak up and voice our concerns. If so many people agree in a particular way, someone aught to explain that aloud for the other party to understand, right?

I got to use my diplomatic speaking-up skills recently.

There's a woman in the world who is trying her best to do good and raise awareness of Juvenile Arthritis. It came to my attention that many parents of children with JA do not agree with this woman's methods. As I saw the concern of these JA Moms, I couldn't sit back and observe quietly. If SO many people feel this way, why hasn't anyone told her? Surely she'd listen to the voices of the people for whom she is advocating.

So, I spoke up and wrote my spiel. It was quite lovely. You can read it if you'd like:

    I'm grateful that you are taking an interest in raising awareness about JA, but I have to ask you something about a tweet you posted earlier today... Why are you unwilling to show the nasty side of this disease?
    It seems like a bit of a disservice to these children to only show the public the smiling, happy moments of their painful lives. Raising awareness of a disease means educating the public about the good and the bad. That includes the swollen joints, the difficult treatment, the trials of daily life, the sickness, hospital visits, drugs, pain and tears. Without the unpleasant treatments and medications, our kids wouldn't be able to smile and put on happy faces for the photos posted on this page or shown on t.v.
    I know that you suffered a lot in secret before your RA was controlled, but you've stated that you want to be open about arthritis now. Please consider the fact that hiding the ugly side of JA from the public is hiding the reality of JA. Putting a pretty face to JA masks the truth that JA is NOT a pretty disease.
    To really help these children, please consider showing the public what JA truly looks like. Do something selfless and use the proceeds of your book sales to donate to research and fight this disease. Stand up for these kids by helping the public see that they are NOT like regular children, but that they long to be.

(She responded and I responded right back. My words are below.)

   Thanks for explaining it a little bit more. I really do appreciate all the awareness that you are raising for these children. I know that it is making some difference, and that is wonderful, but I fear that it is an uneducated awareness that the public will gain.
    You know a lot more about the media than I do, so I appreciate your input on the matter. However, I notice that the media shows child cancer patients without hair. Children with MS are shown in wheelchairs. These images create a feeling of sympathy in others while showing the truth behind the diseases. I don't see why that wouldn't work for JA as well.
    I agree with you that we absolutely need to have a positive, hopeful attitude, but that doesn't mean that the difficulties need to be hidden. It's my opinion that adversity makes the bright points brighter. 

I think that turned out rather nicely, not catty or mean. Well, the lady didn't like it. She thought it was all rather negative and upsetting. She would prefer to show only the happy, smiling faces of children with JA. Okay. That is her choice and she is welcome to do it, but I hope she knows that she is doing so without the support of many JA Parents who want the reality of this disease to be known. 

What good does it do to bring awareness of a disease if that awareness does not educate and inform the public? 

First real haircut!
Here's my daughter looking cute. Lots of kids are cute though, but not lots of kids have autoimmune arthritis. This picture doesn't raise much awareness of the disease she fights.

Look at the one below. This is Juvenile Arthritis, diaper and all. I don't have any video of how she limped while her joints were this swollen, nor do I have video of how she cried in the mornings and leaned against the wall for support to stand. I wish I did.

Look at that knee at the onset of her JA.
Vitamins, Iron, Naproxen, Ranitidine, and Methotrexate
These are her meds before starting her second injectable drug. I don't have any photos of her actually getting her injections because the process requires all of the people in my household and leaves no one to take pictures. 

If you'd like to learn more autoimmune arthritis, search for blogs of other JA families. Go check out IAAM or the Arthritis Foundation. Want to show some support for my family, help us as we participate in the Arthritis Walk this Spring. Join Team Emma or make a donation.

Pretty pictures aren't really helping anyone learn anything. 

Okay, I'm getting off my soapbox now. 

Wednesday, February 1, 2012

Growing a Family

Meet Baby #2. Isn't s/he a charmer?

Feb 1st - 13 weeks along
Emma was my Bean from the very beginning, but I'm not sure what to call this one. According to my weekly Baby Center email, the wee one is currently the length of a medium sized shrimp. I know it's not exactly endearing, but it isn't inaccurate either, so the baby will be referred to as "Shrimpy" for the remainder of this post.

I found out I was pregnant at the beginning of December and actually managed to keep it a secret until Christmas. Well, mostly a secret. For safety reasons, I have to let all of my coworkers and bosses know I'm pregnant right away so no one asks me to take X-rays or help with chemo treatments, so I got to share the news with the Vet Ladies. Having some friends to talk to about made it a lot easier to keep such important news from my mother.

I think she's excited.
My parents and Barry's dad found out as part of their Christmas presents. Emma was wearing this shirt on Christmas day. Grammie unzipped Em's sweatshirt for me, saw what Emma was wearing, and proceeded to scream and squeal in my daughter's face. Poor Emma had no idea what was going on and started to cry. It was priceless.

I am extremely grateful that this pregnancy has been smooth sailing, just like the first one. I've been nauseous but haven't vomited at all, aside from that quick stomach flu a few weeks ago, but that doesn't count. I am very tired. No. That's not the right word. Exhausted is a much more accurate description. Not only am I hosting a parasitic, super fast growing human in my uterus, I am also chasing around at least one small child all day. It wears on a girl. As the first trimester is finishing up, I'm starting to feel a little of my energy coming back, but I'm fairly certain that I still look like a zombie most of the time.

The main difference between pregnancies is that I don't get to sit around and think about this one. Poor Shrimpy only gets my thoughts a few times a day, especially when Emma come and asks to "see" the baby and softly rubs my tummy to say hello. (Sweetest thing, ever.) I also ponder my pregnancy each night as I lie in bed and have some quiet time to myself. Otherwise, my attention is usually on my wild and crazy almost two year old, or I'm zoning out with a good book. By this point of my first pregnancy we had already picked out a boy and girl name, so we were ready. Now, with Shrimpy, we've agreed on a potential middle name for a boy, and that's it. It's weird how life changes.

I'm very excited for this baby. I am happy that Emma will have a little brother or sister to play with and grow up loving. I'm looking forward to feeling Shrimpy move, getting a big, fat belly, and experiencing all of the changes of pregnancy. I am especially excited to watch our family grow and adjust as we add another child to the madness of it all.

I'll be sure to keep you updated.

(Oh. Maybe I should mention. The kiddo is due in early August.)