Spider

I get as squeamish as the next person when it comes to spiders.  I'm no Ron Weasley, but I prefer my spiders outside and away from me.  I hate walking through spiderwebs, I hate losing that spider you were just about to kill, I hate the crunch the big ones make when you squash them in your wad of toilet paper.  Yuck.

However unnerving and creepy spiders are, they are pretty remarkable.  Those resilient little suckers always manage to jump out of the toilet paper wad when I haven't squeezed it tight enough.  Or they expertly find the one tiny crack in the wall and wedge all eight legs inside so you can't get them.  Or there's their little web flying trick they do.  Or they climb up that water spout again and again an again.  

Whether it's escaping the wrath of Sarah, or getting where they need to go, they never give up.

So, it's very fitting that Olivia's number one jam is Itsy Bitsy Spider.  It was the first song she showed interest in and remains her favorite.  It is sung in our home what feels like hundreds of times each day and is so loved that Olivia got a special Itsy Bitsy Spider finger puppet book from Santa just a month ago.  

Olivia is my very own itsy bitsy spider.  Of course, I only want to squish her cheeks with kisses and only use tissue to squash her snotty nose but she is my ever resilient little thing.  She amazes me with her energy and excitement for life.  When it comes to playing, she's more of a lover and will often let others take toys from her but when it comes to life she is a fighter.  Though she can't tell me what's wrong directly she uses her own methods of letting me know something's up.  She never slows down, even when her heart and body are exhausted.  She plays through the blue tinged fingers and toes and dances through the panting.  Even on the rare occasions when it is all too much, Olivia takes her rest, waits for the sun to dry the rain, and climbs up the spout again.  

Olivia had her cath a couple of days ago.  We were relieved to receive good news.  Olivia's numbers are good.  With a couple of collaterals coiled she is set to go and we are already seeing an improvement in her sats.  I'm sitting here watching her play with her stacking rings, trying as hard as she can to fit them onto her feet and wearing them as bracelets.  I can see the leftover sticky residue from her bandages on her leg and neck.  The evidence of her continual fight is right there.  The evidence of her strength resides in that mischievous glimmer in her beautiful brown eyes, in her sweet smiles that she hands out to all who just look, and her determination in getting that Elmo beanie on her head just right.  Olivia picked a pretty good favorite song.  

Anger

I'm trying to get a handle on things but 2014 just isn't starting out like I'd hoped.  Ok, let's be honest.  I wasn't that hopeful for 2014.  I was scared to death thinking of a new year and what it would hold.  I'm finding that the future no longer excites me.  Not that I spend all day everyday all doomy and gloomy.  I've become more of a "live in the moment" person rather than a "plan for the future" person.  Honestly, I can't think about the future because that future might possibly contain an enormous amount of pain.
With Olivia's latest health issue being "possible heart failure" I've taken a step back on my road to recovery.
I've spoken to several heart mother's about the mourning process we go through.  True, we're not all mourning the actual loss of our child.  Instead we mourn the health that our children don't have.  We mourn the pokies they endure, the illnesses they're more prone to suffer, the exhaustion their incomplete little heart causes them.
Now, I don't know all the stages of grief off the top of my head but I've heard plenty about the angry stage.  And that seems to be the one I get stuck on.  With each new set-back in Olivia's health I seem to go through my own little mourning process.  I do my denial, crying, and so on.  But every time, without fail I get stuck on the anger.  It gets a little ridiculous to the point where I find myself being angry and children who are healthy or families who's biggest challenge seems to be getting on a good nap schedule.  And then I get mad at myself for being mad for such ridiculous reasons.  It's a viscous cycle.
So, I am currently in my angry stage.  I still can't believe that heart failure is even something that should cross my mind with every cough or blue tinged finger.  I sit there, watching Olivia who looks completely healthy.  She acts totally fine while she colors, fights with big sister, or makes faces at me.  She is perfectly happy and content and I sit here fuming that my seemingly healthy baby may in fact be sick inside.
I get angry that so much of my future depends on the next doctors appointment.  I get angry that while others are talking about the new exciting things in there lives the only thing I can offer to a conversation is heart related.  I get angry that so often the answer to "How are your girls?" is only partially positive.  I get angry that when I answer that question honestly I'm met with sympathetic looks.
I know.  I know.  This is all anger and grumpiness.  But don't worry about me.  I always come around to that "acceptance" part of the grieving process.  It may take a while and if we receive bad news on Tuesday after Olivia's cath it will take even longer but I will get there.
Just don't tell me to not worry or to stay positive.  That just makes me more angry.  Just be patient with me and, even if you don't understand, accept me in my anger.

Scare the Sanity

Though I've used it a lot since we started running with the heart crowd I have never really understood the phrase, "scare the hell out of me/him/her/it."  You'd think that would be a good thing.  To have the hell scared out should be such a relief.  Because let's face it, the anxiety, fear, loneliness, exhaustion, etc. that come with the hard times in this journey are the true hell.  I'm thinking I would love to truly have the hell scared out of me.  It would be such a relief.  Instead, I keep getting the sanity and peace scared out of me.  Super frustrating!
Over the past couple of months Olivia has been slowly scaring the sanity out of me.  Lower sats, lower energy and new on the scene, crappy appetite.  Naturally, this mama has gone the way of the crazies.  Anxiety's a bitch.  Pardon my french but like I said, sanity is gone!  But at least my anxiety has been vindicated.  Olivia had an echo on Friday and guess what glorious news we received?  Enlarged liver and decreased function.  Nothing like joining the heart failure club.  Nothing like finally realizing why you've been a basket case for the past two months.  Nothing like being hit by that big burly truck carrying the unwanted news you certainly weren't expecting.
Alright, let's be honest.  It's possible heart failure.  Not guaranteed.  There will be a cath asap and then we'll find out where we're sitting, what our options are, and on and on.
But my point is!  Why can't someone scare the hell out of me?  Please?  I don't like breaking down crying every few hours.  It's really a major pain, especially when I actually do my makeup.  I want the sanity back and the hell gone.  Pretty please?
Ok, internet tantrum done.

A Year in Review

My Christmas tree and decor has been boxed up, the decadent cookies and desserts are all but gone, and life is getting back to normal once more.  Where my Christmas tree once stood now sits a giant pile of laundry waiting to be folded and the fireplace looks bare without stockings hung in a neat little row.  It was a spectacular end to a spectacular year. With Christmas come and gone I feel that sense of accomplishment that comes with another year done.
 We created so many wonderful memories.  Sleigh rides and elk at Hardware Ranch, Olivia's first Valentines, St Patrick's Day, and Easter, trips to the Zoo, trips to the park, running through the sprinklers, Olivia's 1st birthday, dandelion crowns, bubbles, sidewalk chalk, a trip to Colorado, a trip to snowbird, a trip to Yellowstone/Island Park, playing in the fall leaves, a wedding, a Harvest Festival, Halloween parties, trick-or-treating, Thanksgiving turkey, Christmas lights, hot cocoa, Christmas jammies.  It was a year filled with so many normal things that the spatter of not normal should be overshadowed.  For my girls, I hope it is.  I hope that all the glorious moments we spent together are what last in their minds.
If I told you it was all sunshine and unicorns, you'd know I was lying.  Just a week ago I wrote about how it wasn't.  The anxiety has ebbed a great deal.  Though I still have fits of butterflies and nausea they don't spoil play time or housework.  Here's me looking on the bright side; maybe it's what I need to lose that last five pounds to reach my goal weight.
Anyways! As many of us do, at the end of each year I tend to reflect.  On the amazing memories, yes, but so much more.  I am a firm believer that this life is meant to teach us.  The good events and the bad are laced with amazing lessons.  I pray regularly for help in becoming the person I need to be.  How lucky I am that those prayers are answered on a regular basis.  The mode of learning how to be that person isn't always easy.  In fact it rarely is.  But I am learning slowly.
2012, that hardest year of my life, was filled with lessons on trusting in my Savior and acceptance of what I cannot change.  2013, a much calmer year, has been filled with thousands of different lessons.
Forgiveness being number one.
When Olivia was first diagnosed one of the first things the doctors said was, "There was nothing you did that caused this."  But anyone who knows me well will tell you I am excruciatingly hard on myself.  My mind immediately jumped to blaming myself for Olivia's heart.  The second hand smoke I inhaled in Vegas casinos when I was 10 weeks pregnant, the bubble baths that might have been too hot, the diet of only cheerios during morning sickness,  and the list of things I did "wrong" could go on and on.  With every set-back Olivia faced the blame and guilt grew stronger.  I hid it well.  No one, not even Andrew knew how badly I blamed myself.  I began the long process of forgiveness this past spring and it has been a long process.  Slowly, I began to forgive myself and let go of the "mistakes" I made during the pregnancy with Olivia.  Though I will always have my moments of doubt and blame from time to time I have come to a point where I no longer constantly wonder what I could have done differently.
Not all of my anger has been centered on myself.  Funnily enough, the anger I felt toward someone else was my fault to a certain point.  Heart defect, not my fault.  The grudge I kept for far too long, definitely my fault.
With a more calm year I have been able to move my focus from one trial to another that I had put on a back burner.  It's not heart related but I still feel it is important to share.  In this particular trial I was hurt more than I ever expected to be hurt by any one person.  Betrayed and broken hearted I felt hatred that I had never felt before.  Others who were affected by this seemed to forgive so easily and I was stuck in this dark pit.  Just as I thought I was starting to let go, I would have nightmares about it and wake up more angry than before.  The only thing that saved me from being swallowed up by that dark cloud of hate was my perfect little baby with half a heart.  All the difficulties that came with her and her conquest of them showed me the perfect light that I knew I would be able to obtain someday.  Every time I thought I had forgot a little of the anger something would happen (often something ridiculous that shouldn't have affected me) and it would flare up again.  It was always the same, one step forward, twenty steps back.  It was a battle I couldn't win on my own.  This spring I began praying for that help I so needed to forgive.  I began realizing I didn't want to forgive.  From where I was sitting, they hadn't changed enough to deserve forgiveness.  So I tried something I had been told many times in church.  Rather than praying to forgive them, I prayed for them.  Their happiness, for them to be loved, for them to receive all the blessings they needed.  The best part of it all, wasn't that I immediately started forgiving them, but after I began praying for them I noticed a change in them.  It was probably a change that had been there all along but I had been to angry to notice.  Small things at first (probably why I didn't notice) and gradually they grew.  Really, the change was in me.  My eyes were opened to the good things happening and closed to the bad memories.  Once I saw that there was a change in this person the anger began melting away.  For the first time in two years I am can throw out the saying "I love them but I don't like them."  For this person, I'm so sorry it took me so long.  It's been a horrible battle with myself.  I love you and I will stand by my promise forever.  I will never give up on you so don't give up on yourself.

Unknown

So many things about this post are unknown.  First and foremost being, I have no idea what I want to write about.  I just want to write.
We'll just start with a quick update on Olivia, the trickster.  Oh how I love my little miracle.  But she's going to kill me.  Ok, the stress is going to kill me.  Whether it's her getting into everything she shouldn't or her health is a mystery but I'm going to die.  Olivia is your typical toddler.  Climbing onto everything, taking whatever she wants, and yelling "MINE!" every other second.  But, as she does this you can see she's not your typical toddler.  Olivia is getting more and more winded as time goes on.  She is not slowing down but her blue little lips, gray feet, and heavy breathing tell me she should.  We're not positive what's going on at this point but her sats are lower than they should be, sitting at an average of 77.  Ideally they should be over 80.  So, our easy peasy appointment that was supposed to be set for March (chest xray and EKG) will be turning into a sedated echo and possible cath in January.  Needless to say, this change has caused some stress for this momma.
Switching gears:
Once the days began to grow shorter I began to notice and increase in my moments of anxiety.  With the time change in November it was like a switch was flipped and more moments were spent in anxiety than not.  At the time I had no reason for it.  We hadn't received Olivia's new pulse ox yet and I was in the dark on her lower sats.  I chalked it up to the darkness (and I do still believe that plays a roll.)
As time as gone on and we've made our way deeper into winter the anxiety has been overwhelming at times.  There is still no known reason.  I had hoped that the holidays would distract from that feeling of impending doom that has lodged itself in my gut.  If anything, the holidays just made it worse.
I've tried to keep myself busy.  Doing has saved me in the past.  Cleaning house, taking care of the girls, playing in the snow, shoveling the snow (which I count as exercise as well.)  But none of it helps.  Well, maybe for a bit but then it's night time and I sit idly, having nothing left to do and that horrid feeling festers.  A few things help.  Deep breaths.  Being held by Andrew.  Talking to Andrew.  Laughing with Andrew.
Then this last week Andrew, my cure, had to work late every night and it all built up.  Each night was worse than the previous and though he tried to help I had already spent too much time in my own head and was feeling lost, scared, and so very alone.
Yesterday was the worst day by far.  The anxiety began much earlier than it normally did.  Nothing Andrew did or said helped.  Our drive to look at Christmas lights with the girls was cut short because the anxiety was so bad that I wasn't sure if I was going to throw up or have a full blown panic attack.  Neither of which I wanted to do in front of the girls.  And, of course, because the anxiety was affecting our holiday memory making that added to the anxiety.  In my mind, I was the worst mother in the world because of this anxiety.  It was making me impatient with the girls, it was making me spend too much time cleaning and less with them, it was making every moment that I was supposed to be enjoying stress-filled and close to miserable.
When we got home and the girls were tucked away in bed Andrew gave me a blessing.  I won't say what he said but for the first time in weeks I began to feel that tightness in my chest loosen.  Andrew held me the rest of the night and though I did wake up with some remaining anxiety I felt better than I had in a while.
A small part of the blessing I received said that I would feel my Savior's love.  I never doubt His love for me but there are times, like the past few weeks, where it has been hard to feel it.  There are times I feel so incredibly alone.  Especially in this heart journey.  I have my fellow heart mom's that often understand but there are still those dark moments where it's hard to claw your way out of you own head and worries.  It's so easy to get lost in it all and feel so alone and scared.  But then you have a moment.  However large or small.  However seemingly simple.  Today I had my moment.
The girls were being particularly difficult today.  The anxiety was significantly less since Andrew had given me a blessing but with the fighting and screaming that the girls were enjoying I could feel the stress rising.  In an act of cooling off I poked my head out the door to check the mail and found the box overflowing.  Our weekly adds had come early and I didn't think much of it until I grabbed the stash.  It was much thicker than it should've been for just the weekly adds and usual junk mail.  I found a manila envelope addressed to Olivia wedged between the adds and a credit card application.  The girls joined me as I opened it and found an assortment of cards inside.  With them was a note from a Jr High LDS seminary class explaining that HopeKids had given them Olivia's name and they wanted to send us a special Christmas greeting.  There were about 20 cards from kids around the age of 14.  As we went through each card and looked at the pictures and read their messages I was incredibly touched.  More than one of these students very simply wrote "remember, you are loved."
I don't believe in coincidences.  Yes, these notes were to Olivia from these students.  But the message was to me from my Father in Heaven.  These simple letters from strangers were what I needed to feel the love I know He has for me.  For the girls these cards were fun and exciting.  For me, they are a sacred testament that I am not alone.  For me, they are a light during this time of confusion and frustration as my mind fights against my happiness.  Tonight, for the first time in a long time I feel completely free of the unexplained anxiety.  Those students will never fully know or understand what they have done for me but I will forever be grateful to them and the inspiration that led them, their teachers, and anyone else involved.
As I get ready to celebrate Christmas with my family, free of those feeling that were weighing me down, I pray for you all that you may have your own Christmas miracle.  Whether it be a baby home from the hospital or making it through Christmas morning without ripping your hair out.  Merry Christmas!

Why Me?

Often, when something tragic happens in our lives, or maybe even something mildly uncomfortable, we are tempted to ask the question, "Why me?"  Often, when we ask that question, we are warned that it will do us no good.  It won't change the situation.  It won't make any difference.  BUT, I say, ask the question.  Whenever I ask the "Why me?" I am overwhelmed by the answers.

"Why me?"  Why did I, out of my many many cousins, my husbands many many cousins, and all of our friends (two years ago) have the baby with half a heart?  Why was I the one who's family was torn apart during each hospital stay?  Why was I the one who was living with the fear of losing my child?  There were so many "why me's" that ran and still run through my head every time we hit a bump in the road.  And with every "why me" I am reminded exactly "why me."
"Why Me?"  Because I am strong.  Stronger than I ever knew.  I never knew that I was strong enough to sleep through the constant beeping of a hospital at night.  I never knew that I was strong enough to hold my child down while the IV team took 45 minutes to place one IV.  I never knew that I was strong enough to fire a cardiologist who couldn't remember the difference between my child and a poodle.  I never knew that I was strong enough to do what it takes to be a heart mom.  That's why me.
"Why Me?"  Because I needed to see miracles.  I've seen the miracle of a baby recovering from two open-heart surgeries.  I've seen the miracle of friends and strangers stepping in to do whatever they could for little ol' me (and my family.)  I've seen the everyday miracles that at one time seemed random, but now I know exactly what they meant.  I've seen the miracle of prayers being answered.  I've seen the miracle of a normally crazy, emotionally messy woman (me) step up and manage to do what she needs to take care of her family.  I've seen God's hand in my life, preparing me for this journey before it started and everyday since.
"Why me?"  Because God loves me.  From the mouth of Mother Teresa, “I know God won't give me anything I can't handle. I just wish he didn't trust me so much."  I was lucky enough to hear this quote days before we were told Olivia had a heart defect.  The initial feelings I had when we were told we would have a heart baby were feeling of inadequacy, loss, weakness.  I didn't think this was something I could handle.  But Mother Teresa's quote gave me that glimmer of hope.  He was trusting me to take care of this special spirit.  He was trusting me to fight for this baby girl.  To fight for her life, and her well-being.  He was trusting me to be the amazing person it takes to be a heart mom.  I had my doubts that I could do this.  I wasn't sure that God was giving me something I could handle, but because He was trusting me with this special role as a heart mom, I knew He wouldn't leave me to do it on my own.  He knew that the blessings would far out-weigh the trials.  He knew that I would find my strength.  He knew that I would get a few steps closer to becoming the person He wants me to be.  He trusted me.  He showed me how much He loves me.  That's why me.

Broken Record

That's what I feel like most of the time.  A broken record stuck on heart stuff.  My life over the past two years has been filled with all things heart.  Heart surgery, heart moms, heart clothing, heart conversations.  While I am totally fine with that, I sometimes wonder if those around me wanna take the broken record in my head and smash it into a million pieces.  But they can't.  I can't.  

In the past two incredibly hard and miraculous years I have learned countless lessons, felt emotions stronger than I ever have before, and experienced REAL miracles.  And I wanna tell everyone about it.  I wanna show everyone Olivia's zipper that represents what she's made it through.  I wanna tell everyone about how she's doing so well she hasn't need occupational therapy.  I want everyone to talk to Ella and see how amazing she has been in sharing her parents, taking care of her baby sister, and not letting Olivia's crazy first year get her down.  I want everyone to know that I made it through this incredibly hard thing.  I want everyone to know that during this incredibly hard thing I felt more loved than at any other moment in my life.  I want everyone to understand that even though Olivia looks perfectly normal and fine, every single day is a miracle for her and for us.  Every time my incredibly cuddly Livie grabs her big sister and gives her hugs or climbs up next to her on the chair and lays her head on Ella's shoulder I want everyone to know that those moments are only possible because of the amazing nurses and doctors at Primary Children's Hospital.  I want to tell everyone everything about every piece of our heart life in hopes that they will know how amazing my girls are, how lucky they are in their health, and that miracles happen.  

I'm almost positive there are some, if not many, that wish I would just talk about something normal.

But this is my new normal.  It's hard.  Incredibly hard sometimes.  But so worth it.  So, from this broken record, I will continue to wear my heart mom hoodie proudly, I will continue to brag about my miracle baby and her amazing sister, and I will continue to tell you about my experiences as Olivia's mom.