Saturday, January 31, 2015

Thankful in our Circumstances

Tonight I am writing to you, dear readers, as an assignment for an online class I am taking.

Also, I know it has been a reeeeeeeeeeeaaaaally long time since I write anything for you. I think about writing all of the time. In fact, I have several unwritten posts swimming around in my head right now. Alas, I struggle to find the right words to recap life as it has been flying by since I last left you.

For tonight, suffice it to say, life has been really hard.

If you don't know, almost a year ago, our youngest baby boy, Andrew, was taken to Phoenix Children's Hospital and was admitted for a week. During that week we were given the diagnosis of Cancer (Neuroblastoma) and a secondary disease called OMA or OMS (Opsoclonus Myoclonus Ataxia/Syndrome) Neuroblastoma, if found early on, is easily treated. When in the beginning stages, the tumor, if very small and not interfering with any organs, can be removed and the cancer is gone. This was Andrew's situation. I can not express just how grateful/guilty/stunned I am that this was the case.(Guilty because of the countless others whose luck was not as good.)  The secondary disease, however, is proving to be much harder to treat and eliminate than we ever would have imagined.

OMS is a neurological manifestation of an auto immune process. (Fancy words = too much time talking with doctors and reading medical journals.) What this basically means is that Andrew's body began creating antibodies to defend itself from the neuroblastoma tumor that resided in his adrenal gland. This tumor was made of nerve cells; the same cells you will find in your brain. Consequently, Andrew's tumor killing antibodies began sending in troops to fight nerve cells. A.K.A his brain. So this caused all sorts of trouble for Andrew. He lost his ability to stand, sit up, hold his head up, pick up small objects, and focus his eyes. Essentially our 1 year old turned back into an infant right before our very eyes. And later we would discover that the rage he was showing had much more to do with his disease than it did with just being an angry kid.

After the tumor was removed, there was some hope that the symptoms of the OMS would subside. They didn't.

So, we began the long treatment process with his amazing doctor at the PCH East Valley Clinic for Cancer and blood disorders. On a daily basis, Andrew receives anywhere between 3 and 6 medications (depending on time of month and days of the week). This includes a steroid called Dexamethasone, Zantac to reduce stomach acid, and a tranqulizer/sleep aid called Trazadone. Monthly he receives a supplement called IVIG, which is an IV infusion of antibodies He also receives two medications via IV designed to suppress his immune system. These are Rituximab and Cyclophosphamide (chemotherapy). He also is given Benedryl, tylenol, and Zofran to counteract the side effects of the drugs. On top of that, he takes antibiotics every weekend to prevent him from developing pneumonia. Suffice it to say, we have a little pharmacy in our kitchen. And even I have to read labels and doses before giving it to him (even after a year) in order to keep things straight.

Through this last year's trials, I have felt every emotion possible. (It seems.) I have felt fear and despair as I held my deteriorating son for hours on end in a hospital where doctors had only read about Andrew's disease, much less treated it. Despair is an emotion that sucks all hope from a situation. And although the sun did rise every day that we were in the hospital, my memories are dark and painful. There was so much fear for the future. So much sadness for this little struggling life. So much pain for his suffering as he clung to the only thing he could - his mother and father.

I felt resentment and anger and wondered why this was our burden to carry. I prayed for guidance and leaned on my faith to keep me from completely losing it.

I felt joy and happiness when the tumor was removed and when Andrew would look at me and smile or want to play with a toy.

I have felt frustration as I have discovered that this is a rare disease and all of the cases are a little different, so treating the disease is not always the same for every child. I have felt frustration when I am trying my hardest to make this little boy happy, but because of his disease, he can't be made happy. Instead, he screams and thrashes and becomes violent.

I have felt elation when he got up on his knees for the first time after the hospital and started to crawl one heavy, labored inch at a time.

I have felt dread when we take Andrew to the clinic for his treatments.

I have felt the love of God when, having had little to no sleep for a week and returning home with more questions than answers, I placed my screaming boy in his crib with a desperate plea in my heart that someone  could comfort him. Running to the edge of my bed and falling on my knees with a fervent prayer that comfort could come to him somehow. Then knowing, without a doubt in my mind or heart, that angels were with Andrew. Calming him and taking care of him in ways that I couldn't.

I have felt gratitude. For so many things. For Andrew's improvements, for his victories, for the lessons we are learning, for doctors that are smart and inspired, for everything. Our family, our home, our life.

In my Book of Mormon class, there is a short video of a talk by President Dieter F. Uchtdorf (First Presidency of The Church of Jesus Christ of Latter-Day Saints). He speaks of being Thankful in all circumstances. He talks about Nephi when his brothers, Laman and Lemuel, tie him up on a ship in the middle of a huge storm. They leave him there for three days, and at this point Nephi is really in a lot of pain. But Nephi says, "Nevertheless, I did look unto my God, and I did praise him all the day long. And I did not murmur against the Lord because of mine afflictions."

And he talks about how we have a choice in how we act in our circumstances. I believe with all of my heart that we have the power to choose. I can choose. Some days it is really hard to "Be grateful no matter what" but I am trying. And that's all God asks of me. Try. 

So Andrew is gaining traction over this disease, and we are over the moon about it. And we're grateful especially because we remember where we came from. We remember who is watching over us always. We know that Andrew is God's as much as he is ours, and that through him, great miracles can happen. We are grateful to be in these circumstances that have stretched our souls to the max and tried us in the fire of our afflictions. For that, I will always be grateful. 
















Wednesday, February 15, 2012

Starting at Perfection

And the post otherwise known as "We're not quite there yet, but we're working on it."

It seems like all the good stuff comes to me when I'm doing the most ordinary tasks. Tonight it came as I was breaking up ground beef for some shlappy joes. (We make 'em extra shlappy...) My wish is that I had been able to drop everything and life were to pause right then and there so I could sit down and write out my thoughts. Apparently my pause button is broken temporarily. I'll have to get that looked at.

But had my pause button worked, I think this is what I would have said in so many words.

I'm not perfect. Far from it.

Phew -- I'm glad I got that off my chest. I know how you like to put me on a pedestal.

But really, I'm a child of the 80's and therefore I grew up idolizing Ariel and Belle. (and Mary Poppins, but that doesn't seem applicable.)  So you'll understand when I say that my expectations of love and marriage were just a teensy bit off. Okay, so I had no idea what to expect! Which is weird because I had my own parent's heartache to witness and I didn't live under a rock (not 24-7 at least.) So why did I believe in my core that love and marriage was going to be so... magical?

Enter my surprise when after getting married I found myself not living in a castle with a Prince or listening to show tunes performed by a dancing candelabra, but living a wholly monotonous life. Breakfast, lunch, and dinner were suddenly lines on my to-do list. Laundry multiplied at an alarming rate, and the floors sure didn't mop themselves.

At first it was like playing house. "Oooh! Let ME do the dishes for you, darling..." (I am laughing at my newlywed self and shaking my head at her. ) And after about three and a half days, it got old. And boring. And a horrible chore. My poor husband was probably in shock too when I'd suggest take out instead of homemade meals. Or when the pile of laundry never got folded, just rifled through until it disappeared into the washing machine only to come out as a new, better smelling pile.

After Arthur was born, everything got harder. Chores became more torturous than before, and I knew I had to buck up and find some way to enjoy what I was doing. I remember doing dishes one night thinking about my lot in life. And then I had the epiphany I was waiting for. I saw a future me -- a much older, much wiser me. And this version of me was a seasoned mother of many children. She had run a home for many years and had practically mastered it as an art form. And I saw a younger mom looking at this older wiser me thinking, "I want to be like Sister Mullenaux." And it dawned on me -- you can't start out perfect. Not to say that the older me is going to be perfect. Not at all. But what I am saying is that we learn bit by bit. Some skills come easily to us as talents, other skills have to be acquired. Sometimes at a frustratingly slow rate. But as long as you're trying every day to do better at that thing, you'll get it some day.

Tonight as I broke up the hamburger in the pan, I could see how far I've come. And I'm glad that I didn't start at perfection because if I had, I wouldn't be as grateful for where I'm going.

And because I like you, I will post pictures of my newlywed self so you can shake your head and laugh at her too.


Tuesday, February 7, 2012

Forget Me Nots

Let me warn you, I'm kind of in a mood. But not just purely griping, but I'm feeling a little down. So, with your permission I'd like to spill some proverbial beans. So, are you ready for it? Let's do this.

Sometimes it all just settles in. Feeling blue. Feeling down. Feeling inadequate. And it usually happens when I just can't keep up with my house and my kids. And it seems the grimier the house feels, the further behind I get, the more I harp on myself. And I start looking outward at other moms and begin the comparing game. Why can't I be creative like so-and so? Why can't I be more organized? I'll never be as fashionable as her. They have more money and can afford to do that. I'm sure they don't want to be MY friend. I'm simply not cool enough. I'm too clingy. I'm losing my touch. Did I ever have a touch? Me me me. Mine mine mine. Blah blah blah! 

Okay, who's already annoyed?? I sure am! So I would like to spin this in a different direction. Although I am feeling supremely down in the dumps, I have to remind myself that I am just having a crummy day and none of that is true. I am reminded of Elder Uchdorf's talk from the General Relief Society meeting in October.

So instead of complaining and having a pity party for one, I would like to share the parts of his talk that strike me the most. Because maybe I'm not the only one with a case of "The blah's". And even if I am, we could all use a reminder now and again, no matter where we are. 

Reminder # 1:
Forget not to be patient with yourself. 

I want to tell you something that I hope you will take in the right way: God is fully aware that you and I are not perfect. Let me add: God is also fully aware that the people you think are perfect are not. And yet we spend so much time and energy comparing ourselves to others—usually comparing our weaknesses to their strengths. This drives us to create expectations for ourselves that are impossible to meet. As a result, we never celebrate our good efforts because they seem to be less than what someone else does.

Boy, do I need to hear that!  But wait, it gets better! 

Dear sisters, many of you are endlessly compassionate and patient with the weaknesses of others. Please remember also to be compassionate and patient with yourself. In the meantime, be thankful for all the small successes in your home, your family relationships, your education and livelihood, your Church participation and personal improvement. Like the forget-me-nots, these successes may seem tiny to you and they may go unnoticed by others, but God notices them and they are not small to Him. If you consider success to be only the most perfect rose or dazzling orchid, you may miss some of life’s sweetest experiences.

That is pure gold, right there.

(I am going to skip through the talk, but if you'd like to read all of it, just click here)

Reminder # 2:
Forget not that The Lord loves you
As a child, when I would look at the little forget-me-nots, I sometimes felt a little like that flower—small and insignificant. I wondered if I would be forgotten by my family or by my Heavenly Father.
Years later I can look back on that young boy with tenderness and compassion. And I do know now—I was never forgotten. And I know something else: as an Apostle of our Master, Jesus Christ, I proclaim with all the certainty and conviction of my heart—neither are you! You are not forgotten.
Sisters, wherever you are, whatever your circumstances may be, you are not forgotten. No matter how dark your days may seem, no matter how insignificant you may feel, no matter how overshadowed you think you may be, your Heavenly Father has not forgotten you. In fact, He loves you with an infinite love.
Just think of it: You are known and remembered by the most majestic, powerful, and glorious Being in the universe! You are loved by the King of infinite space and everlasting time!

Well, I sure do feel better. There's nothing like feeling down only to be reminded that we are all important and loved by God. So I might not be feeling creative or highly productive today. I may feel a little tired and worn down, I may even make a mistake or two; say the wrong thing, judge someone unfairly. But at the end of the day, there is prayer and forgiveness and a reminder that Heavenly Father loves me (and you too!) and He believes in who I am. That I have potential to be something great. The first step is believing that it can happen. The second step is trusting in Him. 
I hope your day is equally as imperfect, flawed, challenging, and ultimately uplifting.

Wednesday, January 25, 2012

I am 16 going on 29

It's true, when all of my 15 yr old friends were going to the DMV to get their driving permit, I was going to the DMV only to be rejected at the eye exam. Sad day. Let us all weep for the memory of the dejected teenage me. And 20-something me. And mother of two me. Okay, did you shed a pitiful tear? Just one, now. Don't get too carried away. You see, although it was a sore subject for me, I now am learning all sorts of things about myself. Some of them are nice, some of them ain't pretty. Some of them are deeply profound. But one thing is for certain, I CAN DRIVE!!!!!!!! 



I can honestly say I never thought I'd see this day. When I came screaming into this world, I was born with a congenital deformity in my eyes called "Nystagmus". Go ahead and google it. it's very interesting. The long and short of it is my parents were told that I'd never see more than black and white shapes, but I'd never see detail or even color. And I would certainly never do things like drive or even read a book. Well, Dr. Smarty Pants is probably living in a van down by the river because he was WRONG. Okay, it's not all his fault. The medical world has made leaps and bounds in the Nystagmus department and has learned a lot about it since then. 

So basically my eyes have a mind of their own. They focus when they want to and go all wacky on me when they feel like it. It's not as bad as it sounds, actually. I just have to concentrate, take charge, and my vision is my own again. Making you nervous to share the road with me?? Hahaha! Too late! They already gave me the license! They'd have to pry it from my cold, dead...

Wait, I had a point. Oh, yes! So my eyesight isn't the greatest, but it's good enough to drive, except that whole "reading signs" thing. Yeah, I can't really do that from a reasonable distance. Sure, I can read it when I'm about to pass it, but that's all. So enter my options. 

1. Don't drive. Rely on others to get around. Be generally needy and feel like a leech for the rest of my life. 
Or...
2.

Take it in. All of it. Go on, I know it's hard but it has to be done. 

I politely declined the goatee and sweaty trucker ball cap. And I try not to make that face when I wear my glasses... (Poor guy.. But seriously, you make that face and post it on the internet, you deserve to be the brunt of somebody's joke.)

So there they are, in all their glory. The Bioptic Telescopic Lenses. 

Sure, I'd love it if they looked a little more like this


Or this...



I just tell myself it could be worse. 


And then I wonder if it is...?
It's best not to think about it. 
So I don't! 
Instead I hop in the car with the kids whenever I want, children permitting. So far I love it. 
And here's what I learned: 
I do not have nerves of steel. In fact, I think my nerves are made of fluffy cotton candy in the hands of a blonde pig tailed 5 yr old named Molly. It has taken a lot for me to get to a point where I'm not shaking behind the wheel. Literally. 
Another lesson learned came from my experience at the DMV. Long story. Let's cut to the end. I had a cranky, intimidating, demeaning, rude woman giving me my driving test. Usually I buckle under such a domineering personality.  I turn into a quibbling, stuttering puddle of a person. But this time, my sheer determination to get my license pushed it's way up to the surface and I didn't buckle. In fact, I was calm and collected and could think through what I had to do. (Which involved telling her I wanted to talk to a manager. She was going to fail me for unsubstantial reasons. I re-tested and got a 100%!) 
It really got me thinking about myself and what Heavenly Father would want me to draw from this experience. For as long as I can remember I have struggled with having confidence in myself. So I really felt like this was an experience designed to give me confidence. Driving in general has been a huge boost to the old self-esteem. I never realized that because I never went through that "rite of passage" that I still felt like a child in so many ways. I feel as if Heavenly Father has blessed me to know the desperation of feeling stranded and isolated and then to know the freedom that comes from independence. I mean, compared to the trials of many others, this is small beans, but I'm glad I am able to learn something from it. Something I hope to never forget. 
G R A T I T U D E

Thursday, January 12, 2012

Early Bird Special - and a Two for the price of One!

So my title sounds like an advertisement for IHOP.

I used to be a morning person. Or at least I thought I was a morning person. Until I met Arthur, who is a true blue, no doubt about it, early bird. 

I like to think my son is special. "Special"- special. You know what I mean. 

No really, I kid. He's a perfectly normal, rambunctious boy. It's just, he's not really a big fan of sleep. 

And I am. 

I remember being an early bird myself when I was younger. I just couldn't wait to get out of bed and start doing something. I especially loved the quiet house -- knowing that the world was my oyster! Well, the house was my oyster. My big, quiet, all to myself oyster. 

Arthur, on the other hand, likes to get up early and make sure that the rest of the house is up too. He doesn't just snuggle up to you and whisper in your ear until you gently come back from dreamland. No no no. He screeches from his room (and lately, comes out of his room to bring the screeching to our room.) and rips you violently from your peaceful slumber. It's jarring and unsettling and heart-poundingly awful. My first thoughts always revolve around calling 911 and emergency rooms. I'm serious! It always seems like something horrible and terrifying has happened. So of course we panic, jump out of bed, run to his side, hold his sweet face in our hands and plead with him to tell us what's wrong. Who has done this to you child?> And do you know what he says? Do you know what he wants?? One (or all) of three things. Milk, cartoons, or to play. 

In all honesty, it's annoying. Straight up, I'm sayin' it. ANNOYING. 

I imagine other mothers and how they'd react. "Oh you sweet thing! Thank heavens there's nothing wrong? Oh, I was so worried! Of course! Of course! You can have whatever you want! Oh! So funny that he screamed like that when he just wanted something so simple! Sweet boy just tell me next time! Ha ha ha!" 

My reaction? "Arthur, it's sleeping time. No, you may not watch cartoons or play. You can have milk if you go back to sleep. For the love of everything I hold dear in this cruel world GO BACK TO SLEEP!"

Some people have big dreams for themselves: Musician, scholar, doctor, pilot, business owner, etc etc.  Me? I aspire to being well rested. Since having little Liza, sleep has become a long lost relative. You know, the one you see at family gatherings talking to everyone else, having a good time, but never to grace your doorstep again.  Maybe you had an argument, a falling out, something that keeps you apart. But whatever it is, you have little hope that the two of you will make amends. Oh, you'll be polite when you need to be -- say your hellos and how-do-you-do's. Make small talk. But the deep stuff is a memory at best. This is what sleep is to me. 

**********************
So let's talk blogs. My friend Jana said once that she hates the word "blog". Like, "So I blogged today! I'm such a blogger! Blogging is sooo awesome!" That's how I imagine she thinks of it. But seriously, let's have a little heart-to-heart. 

When I first had the idea of this place -- (I like to call it that. Makes me feel like I've invited you all to my secret getaway cabin on the beach. Because we all have one of those.) -- So back to what I was saying: When I first had the idea of this place, I really felt like it was important to do. Not that I'm trying to take myself super seriously and say I'm going to have a huge impact. I really think the person who will benefit from this the most is me. But I felt like I was being urged to do it. You can imagine it flowed a lot smoother in my mind. I'd get it started up, begin  posting like a mad woman, and people would respond with cheers of excitement. I had so many posts planned out in my mind. Then I wrote that first post and since then, I've had nuthin'. I think I look around too much at what other people are doing. It's not that I want to do what they're doing, it's just I've been looking for some inspiration. In the wake of my search, I have found a bit of discouragement. 

First thing to learn about me -- the me you're going to really know here, the me that I don't like to admit exists -- I'm easily discouraged. I think parenthood has concentrated it. So here I am, feeling like I need to make this blog, and then I'm looking around and everyone else has it nailed. Why even do it? It's been a bit of a mental battle for me. 

This is what I've concluded: This blog - this thing - is for me. Whatever it is. I'm a total people pleaser, so this is hard for me to do. What I do here is for me. And I hope, genuinely hope that you can gather something from it. And I just want you to know that if you don't love it, it's ok. You can go to one of those other blogs where it's more interesting, where they post tutorials and recipes and pictures of their exciting lives. I'm not saying I won't do those things eventually. That's part of the experiment, to see where this goes. I just really want this blog to be a place where I can be honest and open and real about who I am and what I feel deeply about.

Okay, thanks for letting me get that off my chest. I feel much better. 

Have a great day!
Jen

Friday, January 6, 2012

Welcome to the 'Hood - Beta Edition

This moment is a little scary.

The first words to be spilt on the page. What do I say? I've had this idea brewing in my mind for months now. "I know! A blog for Moms!"

My originality is staggering, I know.

It's comical that I've endeavored to start a "Mommy blog" (as I like to call them). There are hundreds! Maybe thousands of them out there. And all of them ring the same truths: Motherhood is hard. Amazing, but hard. Joyful, but hard.. More than hard, for some of us, it's our greatest challenge. Yes, being a Mom brings us joy and warms our hearts. (I gagged a little after typing that.) We just love nibbling on those little cheeks that say "I love you" sweeter than anyone else. And at night, when their little eyes droop into carefree slumber, we love to stare at that angelic little face and feel our hearts swell with love - endless, unconditional love.

I've waited my whole life for this, after all. Everyone said it was going to be wonderful, being a mom. They said there's nothing like it when you carry that defenseless little creature for 9 months, then all that pain which leads to so much happiness. And then holding that baby for the first time -- there's nothing like holding that baby for the first time. How they lick those tiny lips, and hold onto your fingers with so much trust. How they can sleep and sleep and sleep, only to eat and poop then sleep again. And they said it would be hard, but did I listen? Nooooo. I just wanted to hold that baby for the first time.

And so here I am, married for four years, three pregnancies later, and two kids under the age of three. Life couldn't be better.

Or could it?

Don't get me wrong, being a mom is exactly what I want to be doing with my life. It's here. It's right now. And I'll take all of it -- the good, the bad, and the ugly. The unexpected kisses, the exploding poopy diapers,the smiles, the all night marathons between crying baby and crying toddler, the marital ups and downs, the never ending list of needs that must be met every day, the depression, the discouragement, the love of my family, all of it.

But for me, there is something to be desired still. An empty hole waiting to be filled. By what? I toyed with the idea of going back to school. But how would we make it work? And let's be honest, I don't want to go to work. Not unless it was something I truly enjoyed, and to do that I'd need to have my degree, so we're back to the school idea. Not to mention, going back to school and/or work would mean leaving the children. So scratch that. At least for now. So what then?

And then it started to come to me, bit by bit. And it starts here. Writing down my truest feelings about being a mom. Motherhood uncensored, uncut. 

And that's where "you" come in. Whoever you are. You might be one person, or ten. I certainly don't aspire to being one of those popular blogs with giveaways and facebook pages. Would it be fun? Of course it would! It would also be a lot of pressure, which is why for now, at least for a while, I am happy and content with being a small town operation. And where do you fit in? You read, and if you feel comfortable, you share your insights too. My hope is that somewhere along the way, someone  is inspired or uplifted or reassured that life as they know it is okay. The bumps are only temporary, and that we can be pretty stinking happy if we try.

I hope you'll forgive me for using this blog on occasion as a dumping ground for pent up feelings of anger, discouragement, frustration, and sometimes depression. Because after all, life in the 'Hood ain't always pretty.

Now for the real fun to begin!
Until our next rendez-vous,

All the best,
Jen

A Note - There's going to be a lot of construction going on around here, so please excuse the proverbial mess.  I am really excited to spruce up the place but it won't happen all at once. Thanks for your patience!