Tuesday, January 29, 2013

JA Guilt

I'm only speaking for my family, here, but I'm pretty sure these sentiments are shared by most parents of children with health issues or chronic illness. I know they're real for JA families.

"Who Done It" Guilt

When I first found out that my sweet child is ill with some disease no one has ever heard of, the burning question was, "Why?" Why my baby? Why now? Why? Why? Why? Yet no one had an answer. There is no obvious reason for the pain and suffering that my child had to endure.

That was not acceptable to a parent's ears - there must be some reason.

In comes the guilt. It must be my fault. I provided half of her genetic make up, carried her in my womb for nine months, I breastfed her, chose her food from the store. It must be my fault. Logical or not, I went through this guilt. Thankfully, I moved beyond it, but it's a very real feeling for a parent reeling after a scary diagnosis.

"To Medicate or Not" Guilt

After a diagnosis of Juvenile Arthritis, the next step is to come up with a treatment plan. The medication out there for this disease is scary. Chemo therapy drugs, immune suppressants, steroids. These meds have a variety of terrifying side-effects on their own, plus they make kids more susceptible to infection. What if my baby develops cancer because I chose to give her these drugs? What if she becomes sterile and can't have children of her own? What if she gets a rare infectious disease and we end up in the hospital?

With each new medication, the same fears resurface. The same questions. The same guilt. 

Of course, the alternative is not to medicate. Then, the poor kid could end up unable to walk, tie her shoes, or hold a pencil. How long before she will need surgery to replace a knee or hip? How long will she be able to endure the chronic pain?

"Administering Meds" Guilt

Real life, every day, making my child swallow down the medication that will ease her pain while threatening her liver. Maybe I'm lucky and she takes it like a champ. Maybe she thinks it's gross and fights day after day.

Real life, every week, giving my child injections of medications that will decrease her inflammation and enable her to walk, but put her at higher risks for organ damage and infection. Maybe she screams and cries and my husband has to hold her down. Maybe she sits still and is proud of herself for being brave. But she's only two years old and shouldn't have to be brave.

Guilt. Guilt. Guilt.

"My Baby Is Sick" Guilt

Emma woke up with a cough Sunday morning. I kept her home from church and took her temperature multiples times. When it was time for meds I had to decide if I should give them or not. She didn't really have a fever, so she got her injections as usual. Later that night her cold got worse and the fever came. Is this just the natural progression of this virus, or is it worse because I gave her those immune suppressing drugs when I should have held them for the week?

Every time my kid catches a cold, flu, or bizarre viral rash, I think to myself, "Maybe this infection/cough/fever wouldn't be so severe if I had just skipped her dose this week."   

We're lucky. Emma has had some yucky bugs since starting JA medication, but she's managed to stay out of the hospital and overall remains in really good health. Which leads me too my last category...

"My Baby Is Doing So Well!" Guilt 
AKA "Remission" Guilt

At the beginning of this journey, I felt alone. My family was completely isolated with only this horrible disease and terrifying decisions of an unknown future before us. So we reached out. I made friends with other JA families. They have been a huge source of strength, love, and support to me.

In getting to know other parents of JA kids, I have come to realize that we are blessed. Emma's JA affected less than ten joints. Her eyes and internal organs have been spared so far. She was diagnosed quickly and began treatment right away. She responded beautifully to her medication and hasn't had a new flare since the initial onset of this disease. We haven't seen any active arthritis in an entire year! She is in medicated remission! This is wonderful!

Yet I feel guilty.

I feel guilty that she is doing so well when some of my friends' children suffer endlessly, are in and out of hospitals, and get a seemingly endless amount of bad news from doctors. Why can't they have the same success that we have been able to enjoy?


These feelings of guilt come and go. Come and go.
But JA never goes away.
Em is saying, "I don't have (active) arthritis!"

Thursday, January 24, 2013

The Books of 2012

I read 21 books last year. Not too shabby.
The * denotes books read for book group. 

Lonesome Dove - Larry McMurtry
This is the first western I've ever read, and I loved it. Character development was awesome, the plot was great, and I was genuinely sucked in to the story. After I read it (and told Barry all about it along the way) we checked out the made-for-tv-movie from the library and watched that too. Obviously, the book was better, but the movie (on several VHS tapes) was good.

*The Hunger Games - Suzanne Collins
I suggested our group read this one, because I really wanted to reread it before the movie came out. Love it.

Sing You Home - Jodi Picoult
I liked this book but it didn't go where I thought it would. It has some pretty interesting perspectives on fertility issues, fidelity, homosexual relationships, and family. Overall, a pretty good read.

Catching Fire- Suzanne Collins

Mocking Jay- Suzanne Collins
Because I couldn't leave the series incomplete.

*A Gift of Grace - Amy Clipston
This book is the first one in a series about an Amish community. The story was pretty good, fairly predictable, but enjoyable. However, the writing was a bit lame. The author used the phrase, "dead panned" two or three times in the first few chapters. Annoying.

The Invention of Hugo Cabaret - Brian Selznick
I enjoyed the way the illustrations told pieces of the story without words. A quick, fun read.

*Alcatraz vs. The Evil Librarians - Brandon Sanderson
A very fun, silly book. The main character is a kid named Alcatraz Smedry who finds out that he has a special talent and that this world is not what it seems. I really liked this story and should read the rest of the series.

The Lion, The Witch and the Wardrobe - C.S. Lewis
Sometimes, I just need a quick escape into Narnia. Don't you?

*Rabbit-Proof Fence - Doris Pilkington
A true story about natives in Australia. I'm glad I read this book, since I know almost nothing of Australian history, and it gives a heartbreaking perspective you don't find in history books. I just wish I knew about the glossary of Aboriginal terms at the back of the book before I finished reading the whole story. Duh.

Stonewords: A Ghost Story - Pam Conrad
This is a book I read as a kid and happen to own. Honestly, ghosts freak me out, but all ends well in this story, so I can handle it. Still, it's a little creepy and I'm surprised I read it as a child and liked it enough to buy it.

Home Front - Kristin Hannah
I read Kristin Hannah's books to get easily and swiftly sucked into dramatic stories about relationships. This one was no exception. The main character is a wife, mother, and soldier. She is always remarkably strong for others, but she faces a serious trial, falls apart, and nearly loses everything. It's a good read to be reminded of the frailties of the human spirit and relationships.

The Great Gatsby - F. Scott Fitzgerald
I read this in high school but the only thing I remembered from it was the big faded billboard with a picture of glasses. Not a lot to go on, right? Well, it's going to be a Baz Luhrmann film, so I wanted to reread the book in preparation for the movie. The book was interesting. The movie is going to be awesome. 

*Unbroken: A World War II Story of Survival, Resilience, and Redemption - Laura Hillenbrand
This is an incredible, non-fiction tale about a man who survived Japanese prison camps during WWII. Holy cow. I was shocked by what he endured, what it did to his spirit, and what a war can do to civilized people. How does anyone survive what this man went through? I can't help but wonder if Louis Zamperini embellished his stories, just a little bit.

*The Spy Wore Red - Aline Griffith
Another non-fiction book, this time an autobiography about the author's time as a spy in high-society Spain during WWII. This was a really fun, interesting read. 

*Before My Heart Stops: A Memoir - Paul Cardall
The author is an LDS musician who was born with an abnormal heart. Most people with this condition don't live to adulthood without having a transplant. This book journals his experiences, in his 30s, during the year that he waited on the list for a heart transplant. This guy's life was on the line so many times that he developed a lot of faith.  It was a very spiritually uplifting book. 

Alice In Wonderland & Through the Lookin Glass - Lewis Carroll
I had never read these stories before. They're odd, but fun. That being said, I don't think I need to read them again.

Cheaper By The Dozen - Frank Bunker Gilbreth, Jr. & Ernestine Gilbreth Carey 
I have a confession... I didn't actually finish this book! Having two kids (and one extra, several days a week!) slows down my reading process, and I had to return the book to the library before I was through it all. Excuses aside, I liked this story a lot. It's non-fiction, hilarious, and wonderful. I need to borrow it again so I can get to the end...

The Help - Kathryn Stockett
I finally read this book and am so glad that I did. I want to read it again. And again. I hate that such racism and inequality is a fact of this world, but I love the way the author captured it so truthfully.


There were countless children's books read during the year as well, but I really haven't kept track of those. I can say that I think Mo Willems is a fantastic author and I could read all of his books over and over to my kids.

So, what was your favorite read of 2012?

Monday, January 7, 2013

Help

I'm seriously in need of some parental assistance.

My daughter is trying to...
A. Make me crazy.
B. Give me an ulcer.
C. Get me to whoop her.
D. All of the above.

Any of those answers are correct.

Nap times and bedtime have become a living nightmare for me. Emma has recently decided to resist sleep. Who am I kidding, Emma has ALWAYS resisted sleep. It appears to be part of her nature, but why would anyone resist something as sweet as sleep?!?! I. Just. Don't. Know.

Here's what happens... We follow the same routine we've followed for a long time. She runs around and plays rough with Daddy after dinner, then she goes potty and takes a bath. Brush teeth, put on pajamas, read two or three books, lights out, say prayer, kisses goodnight. VoilĂ . (Nap time is a shorter variation of the same routine.) Sometimes, it works like magic - The girl is quiet, stays in bed, and falls asleep. Other times she screams the second I leave the room. Or maybe she's quiet for a bit, then sneakily opens her door to give me a smile. Each time that I stick her back in bed, she says, "I don't want to go to sleep." Sometimes she screams it. In my face. If Barry puts her back to bed she screams for me, like he's chopped liver. She will fight for an hour or so, cycling between quiet, crying, fake crying, and screaming so fiercely you'd think we were beating her. All I can do is repeatedly put her back to bed. I try to be boring, stay calm, but it's hard to hold down my frustration and downright exhaustion.

The sleep battle is inconsistent, so I never really relax until she has been quiet for half an hour or so. This stress is not good for me. Yesterday, I put her down for her nap without a hitch, but bedtime was horrible. Today, nap time has been horrible. Does that mean she'll go to sleep like a pro at bedtime? I wish.

The worst part is that she doesn't pull these stunts when I'm gone. If I'm out of the house, the transition to sleep is a smooth, peaceful time. Barry suggested that I "go" somewhere at bedtime, even if it's just to sit in the car, so that he can put her to bed without the fight. I'm tempted.

The thing is, it hurts my little mommy heart. I want to be able to kiss my girl and tuck her in at night and have it be a good experience for both of us.

Sigh.

Thursday, January 3, 2013

Happy New Year!

The past few years, my little family has rung in the New Year with a hike. This year we celebrated with a pleasant walk along a flat, paved trail. Miss Emma loves the outdoors, but gets tired and asks to be carried after a mile or two, which means Barry has to be available to wear her in a carrier for part of our adventure. That means I'd have wear a baby and hike, which I am in no shape to do at the moment. Hence, the lovely, flat, New Year's Day walk.

We invited some friends to come along, which was wonderful. Em doesn't understand why little Heather can't keep up with her, but she loves her to pieces. Those two have a lot of fun together. Barry climbed a tree and convinced Emma to join him. We even saw my favorite bird. It was a great morning.



New Year's Day also marked Liam's 5th month of life!

My sweet son continues to melt my heart into a sticky puddle of goo. He smiles so much. He loves to laugh. Lately, he does this precious thing where he looks into my eyes, smiles like I'm the greatest thing in the world, and plays with my hair. He loves to be held, still loves to be swaddled to fall asleep, and is addicted to the pacifier as a sleep aide.

For most of the past month, he has been sleeping in his crib at night and sharing a room with Emma. It has worked out better than I expected. They are both used to the other one's noises and do a really good job of sleeping through when one wakes. (I hope typing that out didn't jinx me.) *Knock on wood.*

I've started feeding Liam baby cereal and he really likes it. Who doesn't like oatmeal? The only problem is timing a feeding so that he doesn't becoming a screaming, angry baby. I always nurse him first, then let an hour go by so there is some room in his tummy for food. When he sees the bowl and spoon he gets really excited and a little impatient. Lately, after eating a bit, he starts to cry every time I take the spoon out of his mouth. At first I thought this meant that he wanted more food, but today I realized he just wants to suck on something because he's tired. Life's rough when you're five months old.

Rockin' his sister's pink bib!
Liam can roll from his tummy to his back. He has done it several times, I even got in on video, but it's been a couple of weeks since his last roll. He can almost roll the other direction as well. We shall see. He loves playing with toys, and is working hard at mastering his hand-eye coordination. He's pretty skilled with his feet, too.

He makes tons of noises, and like a true boy, is already into sound effects. He also really likes sticking out his tongue. I know it was just a fluke, but he absolutely said, "Emma" the yesterday. Em and I both looked at each other in amazement when we heard that one!


I am so blessed to have such a wonderful bunch to call my own.

Wednesday, January 2, 2013

A Holly, Jolly, Cold Christmas

We went on a road trip for Christmas.
Barry has been asking (nagging) me about going to visit his uncle and family in Oregon for several years now. I love this particular branch of the family, I love Oregon, but I do not love the idea of a 12 hour car ride with small children. However, this time, when he suggested it, I said, "Okay."

We loaded up the kids, the gear, the extra snow weather gear, the Pops and his dog, and left our home at 5 A.M. in the pouring rain. The drive up took a while. We made lots of stops to potty, play in the snow, and eat. We also had to drive slowly for pouring rain, and falling snow. Overall, was a good drive.


Twelve and a half ours later, we arrived in Eugene and had an amazing visit with my Rileigh and her family. It was so good to see her and Ben, meet all of their girls, and watch our children play together.

The next day, the boys spent several hours at Cabela's (AKA Barry's favorite store) while the girls and Liam hung out at the house. Then, we drove two and a half more hours and arrived at our final destination in Boring.

We had a great visit with awesome family. Uncle Kris and Aunt Debbie welcomed us into their home. Cousin Kristopher even gave up his room for my little family. Surprisingly, all four of us sleeping in one room worked out really well. Emma loved her arm chair/ottoman bed and both of my kids slept in late. It was glorious.


It snowed. We enjoyed delicious food. Emma ran and played with her cousins. We opened presents and played Mexican Train Dominoes. We laughed hysterically during charades. We had a wonderful time.






I even managed to sneak away with my kiddos for a couple of hours to visit some amazing friends from high school. It was so good to visit with Trevor and Mark and their lovely wives. My daughter played with Trevor & Jessica's daughters. I feel like we've reached a new level of adulthood.

The day after Christmas we woke up insanely early, packed up the gear, the kids, the winter clothing, Pops and his dog, and left the house at 5:20 A.M. This time it was not raining, thank goodness. On the way home we stopped to visit more friends. Every place we stopped, Emma asked me, "Do they have toys?" Thankfully, the answer was always yes.


I'm glad we took this trip, I'm glad I have gained so many amazing family members who love me and welcome me into their lives. I'm glad we don't have any long drives planned for several months.