Sunday, December 22, 2013

Joyousness

JOY.  It's a funny thing.  Sitting in my home tonight, I feel so joyful.  I am surrounded by my family.  (Well, technically, the littles are on the couches watching Elf with the threat that if they get off the couch, the movie goes off) Maddie is sleeping next to me.  Ben is hanging out with the littles. I just finished doing our budget for the pay period.  And I got to thinking, I have so much to be joyful for.  I know that this year has been tumultuous.  It has been chaotic and emotional and pretty horrible in a lot of areas, but there has also been joy.
Joy in seeing Sam really really LOVE soccer and kindergarten and Lego Starwars.  Joy in seeing Eva stop freaking out about getting her blood glucose checked and talk about her little insulin pod to her other 2 year old buddies like it's the cool toy that no one else has and watching her just chat and chat and chat to anyone and everyone.  Joy in seeing Maddie doing anything NOT hospital related, get a high score on a game she plays, sit up in her wheelchair all the way, and sing when she's happy.
I am so grateful for my little family.  I love sharing so many happy moments with them.  Today, in church, Sam and Maddie sang with the Primary for Sacrament meeting.  Sam was thrilled to sing with them and push other kids who were standing next to him and to try and hold himself up on edge of the  wall thingy while Maddie was just so happy to be up front and sing.  It was a very joyful moment.  I loved seeing their little personalities.  Loved having a moment where I think I was able to see them as Heavenly Father sees them - these amazing, beautiful, huge spirits with whom I get to hang out.  And Eva.  Eva who can't sit still and has so much emotion. All. The. Time.  Her little body is so full of spirit that she can't contain it and at times it bulldozes our little family right over.
I loved going to Christmas street with Ben and the kids a couple nights ago.  Loved seeing the lights and read the story of Jesus and then seeing the lights again because there was a really cool dragon made with green lights.  These moments are so fleeting but so beautiful.  Being in the hospital with Maddie so much this past year has really helped me understand how I need to cling to these moments in my memory, because, God has given us so many awesome beautiful and joyful moments and these are the ones to remember.


Saturday, December 07, 2013

2013: take it back

2013. You have rocked our little world more than I would like to admit.  Honestly, I hate you.  There.  I said it. 
Maddie has been through so many surgeries this year.  Infection.  MRSA, S pneumonie, staph epi - just to name a few.  This year, I have seen Maddie feel defeated.  That is something that I never wanted to see.  Yet, she is.  Every fever, every pain, sends fear into her heart - and ours.  We are always wondering, is this going to be another hospitalization?  More often than not, the answer ends up being yes.  I hate that.  We are angry.  This is not stopping.  Today, I write this as Maddie sleeps in her hospital bed.  I look out the window at the construction of the new hospital entryway and I feel the anger.  My back hurts.  I'm tired.  I miss my other babies. We are in the same room that we spent most of the summer. I watch as what started as a simple entryway in the hospital construction, is now transformed into something ornate.  Scaffolding, metal beams, construction tools are everywhere. It's like my emotions.  At first, they were simple to define.  Fear, anger, frustration at the infection, but there was hope.  Now, my emotions are scattered much like the tools all over the entryway construction.  Where is that hope?  It's lost or maybe just misplaced.
Hope is an odd feeling.  It ebbs and flows like the ocean waves.  Some days, on her good days, there it is.  Almost tangible.  Yes, we are going to get through this.  Yes, she is going to be able to be back to her self.  Yes, she can get back into swimming again and we can do things as a family and we can do homework and have arguments about who said what. 
Then, there are the bad days.  Hope is far away.  Sometimes, I think I can feel it, but it is like a breeze.  Gently passes by, but doesn't stay.  These days where they have a lot of procedures planned, her anxiety is out of control and I can't leave her  - even to get in the shower, and I feel her desperation to get out of hurting, feeling, being overwhelmed.  These are the tough days.  Her anxiety and fear are so overwhelming.  As I watch her sleep, I wish she could stay asleep for just a little while longer.  She is peaceful, the anxiety isn't there to take over.  I feel sad as I watch her.  Knowing what the drs have in store for her today.  Knowing that if I tell her, the anger, fear and anxiety pounce on her.  I can't make it better.  I feel powerless, hopeless.
And while I sit here with Maddie.  Watching her sleep, watching the construction of the entryway to the hospital, I think of Eva and Sam. 
2013. You can suck it.  This is the year that Eva was diagnosed with Type 1 diabetes.  February.  Maddie went in for a surgery.  I visited my friend Martha.  Her daughter was in the hospital with a recent diabetes diagnosis. We met for lunch.  She told me her daughter's sx.  I felt sick.  I thought of beautiful 16 month old baby girl waiting at home.  Who recently had gotten really thirsty - all of the time.  Who peed all of the time.  Who was just "not right".  I got home with Maddie that day.  It was a short procedure.  the next day, on my way to work, I called my pediatrician.  It was a Friday.  I talked to the nurse who reassured me that Eva was too young to have diabetes, but to bring her in anyway.  After work, I did.  The dr told me that they would test her blood sugar. Nothing to worry about.  She probably just liked to drink.  The nurse came in, tested her blood sugar and I watched the nurse's face.  She looked ill.  She stood up without a word to us and showed the dr.  He came in and said, "Our meter only tests up to 500.  Your daughter's blood glucose is above that.  You need to take her to the ER.  Now.  She has Type 1 diabetes."  I felt like I got sucker punched.  I started crying without realizing it.  Instantly I thought I was to blame.  He reassured me it wasn't my fault.  We left the drs.  I called Ben. Went to the hospital. Her blood glucose was above 700.  We were thrust into a world that was completely unknown.  We got to the hospital before DKA.  Everyone kept telling us how lucky we were that we "caught it early".  It's odd how lucky seems to be such a relative term. Our world now consists of counting carbs, testing her blood sugar and playing the guessing game on how much she really ate and to "try to not make food a big deal" when that is exactly what it is these days. 
In the whirlwind of all this, there is Sam.  My little buddy.  He misses me.  I miss him.  Last night I talked to him.  He started crying.  Asking when Maddie was going to be home.  When I asked if he missed her, he said "no, I miss you. I want you home".  Oh, buddy.  Your needs get pushed aside more times than not.  Ben and I try to do things with him.  Try to make special time with him.  I feel it is an epic fail.  He struggles but doesn't want others to know.  He is so private.  He needs consistency, balance and we can't give it to him. 
This year, has been the year from hell.  It's taken all year, but we are finally defeated.  2013.  You won.  Now, go away. 

Tuesday, February 19, 2013

Sam is 5!

Sam! You are 5 years old buddy!!!  Holy moly! You are one amazing kid.  I like to call you my buddy.  Because, I really feel that connection to you.  You are cool to just hang out with and talk to.  This year, just like last year, you wanted things done in a very specific way.  You wanted to have friends over for your birthday party.  Just a few friends.  You only wanted to play and eat cake.  I asked if you wanted a magician and you told me that your best bud Hayden did magic.  I asked if you wanted to do an Avenger's theme and play Superhero games and you told me that your friend Coley was the Hulk so we didn't need to do that.  So, on Friday the 15 (2 days after your big 5 year birthday) you had your little buddies over. Kyler and Coley couldn't come.  Hayden, Hannah and Andrew came.  You guys just played.  Then, ate donuts.  (You were saving your special cake for the family parties on Saturday and Sunday)
Before your birthday, I asked you what you wanted.  You had your heart set on one thing.  A cake from Costco with a football on it.  You decided that you wanted it back in September when we got a cake from there for Eva's birthday.  When we picked up Eva's cake, you noticed the cakes with footballs.  You were smitten.  You remembered, so, we ordered said cake and you were THRILLED!! It was all you could talk about.  On your birthday, we went to your favorite restaurant for lunch.  Chick Fil A.  You only like their nuggets. And their rootbeer.  You have never liked fries.  You ate almost 12 nuggets.  Hayden, his mom and brother came with us.  Gammi came with us too.  You loved it!  You and Hayden played in the play area for a long time.  You guys came out every few minutes to give us updates of the slide and kids pushing, etc.  It was awesome.
When we celebrated with your aunts, uncles, grandparents and cousins, you had rules. You didn't want to blow out a candle.  You only wanted the original birthday song and not a birthday song from primary.  I love that you love specifics.
I try to nail down the specifics of what I love about you.  It's hard.  There are so many things about you that bring me and your dad absolute joy.  You are shy.  Once you get to know people though, you have so much to say.  But, if you don't know them, you will not talk. No matter what.  You do not like to be put on the spot or asked direct questions especially if more than one person is watching/looking at you.  If asked about Sonic, Mario, or Zelda, you will talk incessantly about them.  (Thank you Wii and Netflix).  You have a killer memory.  You are so logical.  Just like your dad.  Once you have figured out the reason for something, you will tell someone the reason over and over until they accept it or change the subject.
You are a tender hearted little man.  You are so cute with Eva and your cousins.  You love to play with them and are so gentle with kids younger than you are.
You love to give Maddie, me and your dad choices.  This is usually how you say it, "Mom, here's your choice. You can get me chocolate milk, or be sad for the whole day".  You still like to be held.  I love that.  You still can't say your "L"'s.  You love your rice bag.  You love to play blocks by yourself and have to do things in a certain order.  Your favorite color is green.  We talk about green every.single.day. You LOVE preschool. You can already write your letters.  You are so smart. You love to be read to.  You get frustrated easily if you can't figure it out on the first try.  We are so glad you are in our family.  We love you so much!!  Happy Birthday!!

Wednesday, January 16, 2013

So, it's been a bit.  Surgeries and more surgeries for Maddie have taken over our little world for the past few months.  But, she is recovering.
 October 8th is when Maddie had her tethered cord released and the tissue expanders removed.  3 days later she had her shunt revised.   We got to go home a few days after that.  We were back up at PCMC a little over a week later.  We thought she was leaking CSF from her incision site.  The incision site got "goopy".  They admitted her immediately and she was in surgery the next day to try to find this CSF leak and get rid of the goopiness.  Her shunt was externalized.  The nurses held a birthday party for Maddie's stuffed teddy bear "Mother".  Infection came and she got a PICC line placed.  MRI and CT scans and a lot of waiting.  Maddie begged me to not make her have another surgery. I sat by her bedside and cried with her.  Feeling completely helpless and knowing surgery is coming up soon. A few days later and her surgery to internalize her shunt happened and then back home with a wound vac  on her back to get rid of gunk and get her back ready for skin grafts.
She got a fever.  She got sick with a viral infection.  She went back up to PCMC for a few days.  We met the music therapist.  Amazing.  She was there singing with Maddie as she got her bandages changed.  She sang and played with Maddie when Maddie was sick of seeing everyone else.
Then, we got to go home.  That is where we are now.  She still has the wound vac. We are waiting for all the skin to granulate so that the graft will take and not die. She is down to two dressing changes a week.  (Thank goodness.)
She fears dr appointments and future surgeries.  The day of appointments, she completely shuts down.  Her teacher can't get her to do anything.  She is angry  -a lot.  She has been really sad and the questions are coming at me full force.      
"Why can't I walk?"
"Why do I have to have so many surgeries?"
"Why can't I be like other kids?"
"Why do I have to have this stupid wound vac?"
"When am I going to be resurrected, because then I get to walk?"
She demands answers.  She deserves answers.  I don't have them though.  And that is the part of this motherhood thing that just sucks rocks.
The emotions at our house these days are raw and intense. Trying to get make up homework completed is nearly impossible.
I keep telling myself how much better things are getting.  Maddie is home, there is no infection, home health care is amazing, family and friends continue to be supportive, the kids argue and love.  Better is happening.    

Wednesday, September 19, 2012

Eva turned 1!

Eva!  You are 1!  As of yesterday at 3:14 AM, you are no longer a baby but a toddler.  Oh my baby, what do I say? Your birth was a completely different experience than your siblings.  With you, your dad and I weren't quite as shell shocked as to what birth was supposed to be about.  We took classes this time.  We were planning on hypno-birthing because it promises low pain and peace.  I wanted you to know that as soon as you entered this world, you were loved and wanted.  The hypno-birthing didn't work out, BUT, everything else did.  It was quiet when you were born.  There were minimal amount of staff in the room.  Your dad was tired and when we woke him up because it was time to push, he didn't believe it and almost went back to sleep.  It was that calm, that peaceful.  I was so excited to meet you.  When you came out you weren't breathing.  They spent, what seemed like an eternity, suctioning you out trying to get you to breathe.  Finally, a breathe. A squawk and then I got to hold you.  We had them wait to put drops in your eyes.  I wanted you to see us.  I wanted to see you - really see you.  It was an instant and amazing bond.  We looked at each other.  You and your dad studied each other.  It was beautiful.  You have completed our family!
In this year, I had thought many times that 3 was an insane amount of children.  I felt myself go to the absolute edge of sanity, but then I look at you.  I study you and your brother and sister and I am filled with the most overwhelming love. You are amazing.  You are beautiful.  You are my baby!
As your little personality has come out, we are finding that you are VERY determined.  When you are not okay with something, you squawk/roar to let everyone know of your disapproval.  You also are a bit of a naughty pants.  We find you getting into things - all the time.  When we say "NO!" you smile and continue getting into things.  You give the best hugs.  Whenever anyone (who you approve of) picks you up, your little arm wraps around their neck so tight.  It is the most amazing feeling.  You love to snuggle and cuddle.  Most days, you don't want to be put down.  I wish I could hold you all day every day.  You are walking and babbling all the time. You took your first steps at about 10 months.  You also say little words like mama, dada, ball, anem (amen) and something similar to thank you.  you are so smart!
Your eyes.  They are what most people notice about you first.  "What beautiful blue eyes!" "Have you ever seen eyes as blue as those?".  As you smile with the compliments, people continue to comment on how adorable you are.  Your aunties, Nonni and I have decided that when you smile you look like a cabbage patch doll.  Cute cheeks and big cheesy smile and no hair!
You still sleep in bed with me and dad.  You HATE covers.  No matter how asleep you are, as soon as any sort of blanket goes on you, you kick it off.  I worry that you will get cold, but you won't keep blankets on you.  Eva, you HATE to nap.  I wish that was different.  When you were first born and for the first 3 months, you took naps like a champ!  Now, you flail and scream and cry when you are tired but refuse to sleep.  When you do fall asleep, you have to fall asleep on someone.  We have tried to get you to fall asleep on your own, but being determined, you flail and kick until some part of you gets injured/bumped/bleeding.
Oh baby.  You have rocked our world!  You are this little ball of energy that knows what you want and won't stop until you get it. You are teaching Sam patience.  You are teaching Maddie more kindness.  You are amazing and you are our baby.  Happy Birthday baby girl!
Love,
Mom




Wednesday, August 15, 2012

Maddie's 8th

Maddie: Tomorrow you turn 8.  Holy moly!  So, as a way to remember how you were at this age, let's find out a little more about you.  
Favorite color: purple
Favorite sport: tennis
Favorite book: Stink
Worst fear: surgery
Favorite food: pizza (cheese)
Food you hate the most: shrimp and stroganoff
Most fun thing you have done this year: Went to Snowbird!
Maddie wants me to say: That she is cute (agreed) and she likes Eva.  She likes to color and write stories with this lady named Kristi from our ward.  
Girl, you are amazing.  You have a tender heart, but a no nonsense attitude.  In your book, you are the boss.  You like to help Sam and Eva remember that you are the boss lest they forget. You picked out your own school clothes this year - Wowsa!  You like to sparkle.  Thanks for being my first baby.  Thanks for letting me figure this parenting thing out on you.  I love you so much!  Happy Birthday baby!   

Sunday, April 22, 2012

video
My kids first duet!  So freaking awesome. Thank you to the Muppet Movie.  Without it, this scene would have been impossible.