The Reason...Letting Go

April 30, 2009

(Me loving Airica)

Thank you all for sharing this journey with me though "this time of year".  I want to share why I am doing this.  There are a few reasons.  First of all I want everyone to know Airica.  The journal pages we shared introduced you to my 13 year old daughter so silly and full of life.  Her journey through the days leading up to today have shown you her spirit and her ability to smile through some really tough times that no one should have to ever go through.  The pages from now forward are going to introduce you to the amazing strength and perseverance that is still incredible to me.

Next, I am reading these journal pages and taking this journey for the first time since I lived it.  Many nights I can't sleep because my mind is racing and thoughts and visions from these terrible life altering times flash in my head.  I want them to STOP!  Or do I?  I have learned that sometimes we think we want the bad thoughts to stop but we really don't.  Sometimes the reason is that we feel that we are deserving of the pain.  Sometimes we feel that hurt, that pain is our connection to holding on to who or what we love.  I know now these are both true in my case.

Finally, I am sharing because going through something like this gives you a unique gift.  You have the experience to help others that fall upon the same or similar circumstances.  You have that something, that piece that is needed so much to give, the words...I understand what you are going through.  I have been there.  I know how you feel...because I have gone through this, I have been there, I feel it.

So, those are my reasons.  Oh yeah...one more.  You see once you realize that you are doing something to yourself that you should not be, the logical thing would be to stop.  So as I blog each day I tell my story.  I share my pictures, both good and tough.  Each day I write, I remember, somedays it's SO hard, and once I publish...I let go of the pain I was holding form that day and focus on the good.  Somedays it seems there's no good...but there always is.  If I learned anything from that beautiful soul Airica, it is that there is always good, always a reason to smile, always love.

(Resting her lungs prep for more tests)

A Rough Night

April 29, 2009

(Airica being Airica...Silly)

Last night was a rough night.  We were trying to settle in our new space and Airica had a lot going on, oxygen, blood transfusion, and at first what I though were sighs in her sleep.  The sighs in her sleep were actually breathing failure.    After a few doctors came and checked on her they decided to move her back to the PICU, because it seemed that she was having some unanticipated respiratory problems.

She was very tired, the sighs were waking her up all night, the blood transfusion creeped her out, and now another room change.  Again, we packed up our collection of toys, balloons, stuffed animals, and  other comforts from home we had acquired and headed back to the PICU to the new room.  

The oxygen that she had on her nose was not getting her body the oxygen that she needed.  They did an x-ray of her chest, and had to have her use an oxygen mask to get her what she needed.  Her lungs were shutting down and they had no idea why, and they had to run some tests to figure it out.  

The RT (respiratory therapist) Frank, was so kind to Airica and she returned the kindness right back.  The mask was so uncomfortable to her she didn't like it one bit.  We explained to her that it was needed and she had to try.  She understood.  Frank set up the machine and made all of the adjustments trying to make her as comfortable as possible.  She sincerely thanked him for his efforts and apologized for her frustration with the mask as she tried to keep her tired eyes open.  He looked at her, speechless, then he looked at me with so much compassion.  He could not believe that this sick child, who was exhausted by this point just from trying to breath, could find the strength to worry about him and his feelings, and even apologize for her frustration, which he felt was completely understandable.

The rough night turned into a rough day.  We made it through though with the help of some new friends.  Airica finally got to sleep.  I sat in a chair to the left of her bed laid my head on the side of her and held her hand all night telling her how much I loved her and making sure she knew she was not alone.

This was Airca's last journal entry.

Settling In

April 28, 2009

We got woke up really early today (from our secret sleepover) to move into Airica's more permanent room.  Early at the hospital...like 4am!  We gathered all of the toys, balloons, and other items that we had been accumulating and sleepily headed down the long quiet hall.  The room was really nice.  It was a private room on the pediatric floor right next the playroom.  It was at the end of the hall so it tucked us away into a nice little private area.  There was a full bathroom, Disney channel, big windows, and they were already looking for a game system as another addition to our many amenities.

On this day, there was a special visitor at the hospital.  He jumped right up on Airica's bed to visit.  She loved this visit because she had been missing our Emma (you can see to the left of the picture her replacement Emma.  There were so many visitors and volunteers at UC Davis there for only one purpose, to make the great (sick) kids feel better, feel normal, and have some fun.

As we prepared for our stay Daddy went home to get some items to make us all feel comfortable, a new iPod for Airica (if you were reading the journal the irresponsibility with the iPod is that she lost it), and his work computer.  This is Airica's impression of what her Daddy does at work all day.  As time passed we were adapting to our current situation and trying to make the best of it as we still waited for the results.

On one hand we were anxious for the results, so we could move forward and find out it was no big thing, deal with it, and move on back into our normal happy lives.  On the other, we almost cherished the moments not knowing.  Knowing the results could possibly be so devastating that our lives would never be the same.

So, today we played some more.  Laughed, added songs to the new iPod, took real showers in our private bathroom, and prepared to be apart this night.  Alyssa had to go to school and since things were settling in Daddy and Alyssa were going to go home and rest, and try to do things like normal.

Up until now Airica seemed like a normal, healthy kid, just hanging out in a hospital.  As the evening came upon us she started feeling yucky.  She was tired, her blood pressure was low, her oxygen levels were low, she couldn't eat, and her blood tests were showing that she may need a blood transfusion due to low platelet count.  

It was time for Daddy and sissy to leave.  Daddy said his goodbyes and headed down to bring the car around.  A nurse said she would walk Alyssa down once she said her goodbyes.  My two girls hugged, they held each other so tightly, eyes pressed closed, sobbing and talking to each other in some sort of gibberish that they both seemed to understand.  The nurse helped peel Alyssa from her embrace with her sister and walked her to the car.

This night was a tough one.  First came the oxygen, then the blood transfusion.  She was so brave, BUT she did not want to see the blood!  So they drew some colorful pictures, and signs that said Princess Airica, with hearts, rainbows, and flowers to keep the bag hidden from her sight.  I held her all night as I listened and watched her breathe as I had done when she was an infant.  I watched the the bag of platelets empty.  Telling her over and over how brave she was and how much she was loved.

Secret Hospital Sleepover Fun!

April 27, 2009

Today started out a little crazy.  They had to move us to a different room.  They had Airica in the PICU to keep an eye on her initially. However they needed the room for another child who was more critical, so they moved her to an overflow sort of room while they awaited a room on the pediatric floor that would be more permanent.  This overflow room was not fun.  It was a big room with several beds/cribs, and only curtain separating us from the patient next to us, and worst of all no Disney channel.  Actually no TV at all.  Yes, we almost freaked out!  This one thing is what almost set us over the edge...what about our secret sleepover?

In preparation for this secret sleepover we started asking around.  "So...how late can Alyssa stay and visit her sister?"  The best response we got was there are no set visiting hours (visiting is encouraged) but Alyssa could not "sleep" there.  So how we interpreted that was, that as long as she was awake she could say, right? Who really sleeps at a sleepover anyways?  

Daddy had went home and picked up the slippers, nail painting supplies, coloring stuff, Disney movies, and our favorite junk food.  But still we were in this horrible, unfriendly overflow room.  It didn't look good for the sleepover plans, and it sure didn't feel good.

Like I said it was a "secret" sleepover plan, but we had asked a few too many questions, so as it turns out many people kind of knew of our plan.  As we sat in our curtained corner of that uncomfortable room we see some of these "people" (we won't name any names to protect the guilty).  One is rolling in a TV, the one behind is caring a very long cable to make sure we get Disney channel, another with an extra food tray for our secret sleepover activities.  They arrange the stuffed animals and balloons around us as they create us this awesome fort-like area in the corner of this crazy room.  We are in awe of the transformation.

This was such a fun evening!  We sang, played, watched movies, painted our nails, ate junk food, almost like a regular sleepover.  Don't tell anyone but Alyssa didn't stay awake all night, but she slept next to her sister, right where she belonged.  

Still waiting...

p.s.  Thanks to all the sneaky secret people "not" mentioned above for one last sister sleepover!

How did we get here? Why us?

April 26, 2009

 My beautiful girls.  Just a few months before.  Sitting outside of the California State Capital.  Such beautiful day.  The mild California sun shinning upon our little family.  The colorful foliage that is just part of the natural landscape of Northern California.  Laughing and loving each other as we explore Downtown Sacramento.  I remember this day like it was yesterday.  After this picture we walked though the huge park surrounding the building. Looking up at the structure wondering which office belonged to Arnold Schwarzenegger our governor.  Then we went to a downtown Starbucks where they refused to make us Frappuccinos with soy milk, and then wouldn't let us use the bathroom if we didn't buy something?  All in all it was a fun adventurous day. Nothing out of the ordinary.  By the way Daddy stopped at another Starbucks so we could get Frappuccinos with soy milk and use the bathroom.

My beautiful girls.  Just a few months later.  Trying to be normal, feel normal, act normal.  Our life is so far from where we were just a few short months ago.  In the hospital, awaiting SERIOUS scary tests, full of fear of our unknown future.  As the waiting and fatigue set in you can't help but ask...how did we get here?  Why us?  Not that you wish this fate upon anyone else, but WHY?  Maybe it will be ok, and life will be back to normal?  Maybe it will be the worst possible results?  What will we do then?  Oh no...will that last thought be a factor in the outcome?  Do I pray?  Will it work?  Do I even have faith in a God that could create such an unfair situation?  Sometimes not knowing the answers to questions like these is pure torture. 

Although all these thoughts are racing through my mind I look up at my children.  Two perfect little people that I helped create.  Loving each other, playing, giggling, and arguing over which one loved me the most.  I had to just cease all those thoughts and enjoy that moment.  I had to jump out of my head and into that hospital bed, which was being used somewhat like a carnival ride, and "be" there with and for my babies. And I did...so we started planning our super fun, girls only, secret (oops...no kids other than patients allowed to) sleep over for tomorrow!  Laughing and loving each other as we go through this together.

 Now...we wait.

April 25, 2009

If you have ever had to wait in a doctor's office or hospital, than you know the fun and entertainment that is in store for you right?  Due to the fact that most of the people in hospitals are doctors, nurses, and tired parents, fun and entertainment is scarce.  So, as we waited for the biopsy results, we entertained ourselves with the help of doctors and friends.

Below was the main event of this day.  A CT (CAT) Scan.  The show was presented by our lovely vegan ;) doctor.  We all sat around the screen as we took a virtual tour of the insides of Airica from the top of her beautiful head to...well...as the doctor so gracefully said it, her bottom.  Airica thought that was the funniest thing that she had ever heard.  She asked, "My bottom? Like my butt?"  Yup!  Her bottom like her butt, booty, tushy, bum, or whatever you prefer to call it.  We watched it over and over, like the funny part in your favorite movie that you rewind over and over and laugh a little more each time.  I think even the doctor enjoyed the show and antics.

Unlike our primitive home, the hospital had cable!  O-M-G DISNEY CHANNEL!!!  We did not, and do not have cable TV.  As you know this day and age that means no TV.  Both Airica and Alyssa consider this a form of child abuse (please don't report me we have lots of DVD's).  Below is Airica, Alyssa, Aleena (the BFFAE), and her sister Seana (aka my red-headed step-child).  They are actually demonstrating the facial expressions and postures that are the reason we don't have cable, while watching Phineas and Ferb.   

Like Aleena and her family so many people came to visit.  Bringing food, love, toys, and best of all kids to fill up the this quiet room in the hospital with energy, noise, and color. Helping us to forget we were there, and why we were there.  To all of those people, we remain grateful to this day.

More of our journal entries XOXO

FYI: Googie is a nickname that only her Dad (Eric) and I called her.  Like many babies goo was one of her first sounds.  When we would say goo to her she would bust out in goo goo conversations with many laughs, smiles, and goos.  When we would see her cute little baby face we would say "Hi goo goo" and her response was amazing!  That morphed into "Hi googie" and it stuck. I called her Googie, her Dad called her Googie, as you see she refers to herself as Googie.  However that is where it stayed just between the three of us XOXO 

Rockstars Get Surgery AWAKE!

April 24, 2009

Big, huge smile--->>>

     Yes, it is true!  Airica had a biopsy while she was awake.  The tumor was so close to her esophagus that the doctors were worried that intubation would cause more harm than good.  So they talked to her about it and agreed to take on this adventure AWAKE!  
     She was so brave and strong.  I was the one freaked out about it.  She thought it would be SO cool.  She thought the scar or "the battle wound" was going to be cool too!
     The whole time during the procedure she chatted with the surgeon and of course he fell in love with her adorable little...I mean ginormous personality.  
      He named her officially "His best patient EVER!" He also added that was including the adults patients.  
      She was a ROCKSTAR!!!

      When the surgery was finished and the silly drugs wore off in recovery, we headed back to her room.  Upon arriving her room was filled with balloons, stuffed animals, flowers, (the fake ones that are allowed in the hospital) and all kinds of cards and get well messages.  
      As you can see from her huge smile she LOVED every last bit of it.  She deserved it.  She was so amazing doing what she did. 
     As each day came and new challenges came up I kept being amazed by the strength and courage that exuded from this beautiful child of mine.  Where did she get this?  Where did it come from?  I was in awe of it.  I don't think the magnitude of strength and courage that she had was learned, it was in her and was being shared only to be learned from.

      The journal entries here make me laugh every time that I read them.  Her, chores, shaving, Santa, fussing with her sister, the boy...Jorge...who pretended to hug her and snuck her a kiss on the cheek and made her tummy fell funny!  My baby growing up too fast. (WAY TOO FAST)
      Me, enforcing rules, making chore lists, refereeing the sister squabbles, explaining WHY we don't shave our legs dry, loving, being patient, teaching patience, and trying to let my baby grow into a young lady.  (even though it was so hard)
      That is a lot of things for two people to be doing all at once.  But it was just enough for us.  The journey of being a mother is and has been  ever since Airica was in my belly, my most favorite part of this life.

Sometimes love is for a moment.

Sometimes love is for a lifetime.

Sometimes a moment is a lifetime.

Routine Tests

April 23, 2009

The above picture is of Airica on the inside.  You can see two shaded areas in the center of her spine. The top one is a tumor, the big one on the bottom is her heart.

The above picture is of Airica's heart that you can see on the outside.

Our second day at the hospital started out as our last day.  The day started and so did the tests.  We met lots people on this day (little did we know that many of these people would become very close and dear to our hearts) doctors, nurses, a social worker.  Everyone was so nice.  Everyones goal was to get us out and on our way.  The last and final test was the x-ray.  Other than that every thing else was normal (normal as far as a child with rheumatoid arthritis).  Airica and I were down in the x-ray room laughing and giggling and ready to get the heck out of there.  She got the x-rays taken and we were on our way up back to the room.

The x-ray room was on the first floor, her room was on the 5th.  We made our way up and around through the maze of ramps, elevators and hallways back to the 5th floor.  As we arrived, the mood had very much changed.  The x-rays beat us up there (via computer).  They had me take Airica into her room and come out and talk to the doctor about the x-rays.

They pretty much told me what I wrote under the above picture.  They wouldn't be able to tell me anymore until some more tests were run.  They would now schedule a biopsy.  We knew we would be there for a awhile.  

As a mother I was terrified.  Of course we always think of the worst.  I couldn't show that though.  I had to be strong and have hope for my girl.  She never liked doctors or hospitals but this one, it was really nice, it's a Children's Hospital.  Everyone is specially trained to take extra loving care of children.

As we settled in we talked about things we may have to soon face.  We tried to do this optimistically, with hope, and remember that we had to make it understandable but not scary for Airica. She said, "Mommy, just tell me what's going on.  It's about me and I am a big girl I can handle it." so matter of factly that I could already see and feel that she had an amazing strength within her.

We talked we cried, we loved, and we made promises.  Mine was to stay by her side, be honest with her, and to make sure every night that she stayed in the hospital I would too.  Hers was to fight this "monster" with all she had.  

Below are the next two journal entries.  They are not in order with blog/anniversary dates because we just journaled when we felt like it with no pressure.  The dates will match up April 30.  Thank you for following, thank you  for allowing me to share, thank you for helping me heal.

My Life 3 Years ago Today

April 22, 2009 

Today three years ago was a Monday.  Airica was sick and feeling really yucky.  After a doctors appointment, she was sent to UC Davis for some routine tests.  She had been diagnosed with juvenile rheumatoid arthritis a few years before so the symptoms seemed like a relapse, as she had been in remission for a year and a half.  They admitted her overnight just to be safe and planned on getting the tests done and releasing her in the morning when they could schedule her an appointment with a pediatric rheumatologist.  

This picture was taken as we waited for them to find her a room.  As you can see, even as she is in the hospital and feeling so bad, she ALWAYS had that beautiful smile on her face.

Soon will be the three year anniversary of losing our beautiful girl.  We don't have much experience with this as it is only our third time around this "time of year".  So, to explain, as this "time of year" comes around all kinds of feelings and emotions come up and it seems no matter how "well" we are doing "this time of year" pulls that out from under us.  Where we land...right back here April 22, 2009.  When it is a joyous anniversary or time of year such as a holiday the same thing happens.  We get tons of feelings and emotions and become reminiscent of those times past.  The difference is one is joyous, and one is heart wrenching.

In the spirit of love, happiness, Airica, and my desire to share all of those things with everyone I am going to share this "time of year" here on this blog.  CALM DOWN!!!  I know I am good for some criers, and I am not going to guarantee that some posts won't make you cry.  However I am going to take the "Airica Approach" to this anniversary.  Which is finding the good in anything and everything no matter how hard that may be, and always no matter what finding a reason to smile.

Raising a teenager is hard!  Some of you know that...some of you will soon, and some of you will someday ;)  Teenagers speak a very different language than the rest of the world and unfortunately some time the translation, (especially when talking to parents) well, it doesn't translate.  The accent of this language is many times viewed as attitude (and not the good kind).  Sometimes the teenager will get the correct translation, and the correct accent and approach you at the most inopportune time.  Looking at it in this way you kind of feel sorry for them.  With all this being said communication is so important with your child and even more so for teens!

I really didn't know how to break the language barrier.  Airica came up with this wonderful idea!  We would write letters to each other.  We would sit down, think about what we wanted to say, how we wanted to say it, and have the time to erase if we are angry and calm down.  It would give us a chance to read and really absorb what the other person was saying and really appreciate it.  It even turned out to be the best translation device.  It was a brilliant idea!

I took the letter idea and turned it into a journal.  We would pass it back and forth sharing, writing, reading, understanding, and getting to know each other.  I am going to share the journal entries with you all.  I hope you enjoy getting to know Airica and our relationship.  Her love an innocence are beautiful and refreshing.  I am so grateful for these few pages that we shared.  The journal ends our conversations and begins my Journal of her stay in the hospital and that begins on April 30.

I will be so happy when...

I will be so happy when I finish high school.  I will be so happy when I finish college.  I will be so happy when I get the job of my dreams.  I will be so happy when I get that promotion.  I will be so happy when I meet the man/woman I am supposed to be with.  I will be so happy when I have a baby.  I will be so happy when my hair grows out.  I will be so happy when I move to a city with better weather.  I will be so happy when I am debt free.  I will be so happy when I get over this break-up.  I will be so happy when I lose 10 more pounds. I will be so happy when they make chocolate chip cookie dough T'soynamis.  I will be so happy when I am grown-up.  I will be so happy when I am on vacation.  (ENTER YOURS HERE)  I will be so happy when_______________.

How many times do we all say these things?  I have been observing, and we all say this so often.  Almost without thinking about it.  Looking at the above list of things that will make us happy there's no wonder why we are never happy.  Most of the things above are either in the future, not guaranteed, or are completely out of our control.  Why would we base our happiness, the one thing that we all so very much desire, on such improbabilities?

Why don't we ever say...I am so happy right here, right now in this present moment?  This is what counts right?  The past no matter how wonderful or painful is gone.  Trust me, if anyone knows how hard it is to move on from past heartache it is me!  Even having said that, what can I or anyone else do about past heartaches or hurts?  Nothing.  It is already done.  As much as we would like to go back and adjust past choices, or heartbreaks we can't.  Why do find ourselves revisiting them and making those our now?

Why do we count on future fantasies to create our happiness in some make believe world in the future.  Of course we all have dreams, goals, and ambition but that is not what I am talking about here.  We all seem to be awaiting this happiness to come to us in the future.  Why are we always waiting?  Are we asking for the wrong things to make us happy?  

Or maybe we should stop looking for something, somebody, or some event to "make" us happy and just be happy?  Are there enough blessings in our current life to "be" happy about? Once you start to think about it, you may notice the happiness that is here and now in this present moment.  Even in the hardest of times, on the worst of days, there is happiness for you if you are willing to see it.  If you can't find any...make some!  Forget your selfishness, make others happy, and you will be the happiest person.  By seeing others happy, you can never be unhappy.  I didn't make that up it is Patanjali...I wish I did...I will be so happy when I make up a great saying people will quote...LOL...HA HA HA...JUST KIDDING :D  I am just happy right now that I can share it with you.  

LOVE and HAPPINESS to you NOW and always XOXO