Love is Blind

May 31, 2009

Airica was so happy to have all the tubes off of her face.  The doctors would determine on Monday whether or not they will have to put the feeding tube back in or let her start to try eating pureed food.  She was hoping for food.  Another thing she was begging for was a shower.  Again, she would have to wait for Monday to see a physical therapist who would determine how much physical activity she could do.  So, we had to wait.

Waiting wasn't too bad.  We had a lot of fun.  Airica was watching her Disney Channel, playing with her sister, napping, and being silly and funny all day long.  When evening came around we were all pretty tired from all of the playing and silliness.  Christopher and I would stay with her at the hospital, and her other Daddy would take Alyssa home so she could get ready for her last week of 5th grade.  We all wanted to stay and play, but we had to part.

As we all got ready to say our goodnights, Airica seemed as if she was trying to pull out another tube, but there was nothing there.  She looked kind of silly, like when people run into a spider web and are trying to get it off of themselves.  I laughed and asked her what she was doing.  She told me that she was trying to see out of her right eye and thought that it was covered with tape.

It wasn't covered in tape, Airica couldn't see out of her right eye.  We had to call the doctors and let them know right away.  Airica just said, "Aww man.  Why are you telling on me?  They are gonna make me go do stuff now."  Sure enough, they made her go do stuff.

They called in an on call eye doctor and sent her down for an emergency MRI.  They needed to figure out why she couldn't see, and if it was reversible or not.  After the running around, tests, and staying up too late they came to their conclusion.  The artery in her neck that they used to connect her to the heart bypass machine, was they artery that supplied blood to the optic nerve.  Once severed it was permanent,

We all headed back to the room.  We were all so grateful that Airica was here and alive, but this was still hard to accept. Although I was feeling that this was just another disappointing reality to add to the list, I had to pull myself together and be there for Airica.  

When we got to the room and got settled, Daddy and Alyssa headed home.  I got myself and Airica all ready for bed, as Christopher made up the chair for himself.  I kissed my beautiful girl on the forehead and looked her in the eyes.  I told her that I could see inside of her beautiful little soul through her beautiful big brown eyes, and that I would give her one of my eyes if that would make her be able to see with both eyes again.  She replied, "I love you Mommy, but I don't want anymore procedures.  Let's go night night so you can hold me."  So, that's what we did.

Daddy's Here and She's Moving Out

May 30, 2009

Big day today!  Again for many reasons.  First thing this morning the primary PICU doctor officially signed Airica out of the PICU and she got transferred to the pediatric floor.  This meant that she was now too well to stay in the PICU.  Soon after the transfer, Daddy got there.  Today, chemotherapy would begin.

It was so exciting getting checked out of the PICU.  All the doctors and nurses of the PICU would have to stay in the PICU.  They would miss Airica so much, but they were all very happy that she was headed out.  The doctors and nurses on the pediatric floor were very excited to be getting Airica.  Her amazing strength, courage, and huge lovable personality had given her a reputation they had all heard of.  

Then Daddy got back.  He had been there before but it was while Airica was sleeping so she didn't remember.  As soon as she was awake I had told her he had been  there and that he would be back soon.  She was so anxious for that moment to come...and it was here.  They just looked at each other for the longest time.  Smiling the most beautiful smiles of love.  The love was so luminous that all of us in the room could see it and feel it.  

Now came in the nurse who would administer the first round of chemotherapy.  It was pretty scary.  It didn't look scary, it looked like any of the other meds that Airica had been given through her IV.  It was scary because we knew what it was.  The nurse had to wear gloves and make sure that the very strong drug did not touch her skin.  I asked why.  She said because it was poison.  Poison that would kill all Airica's cells, bad ones, and good ones.  Then hopefully the bad ones would die and the good ones would come back good, healthy and strong.  Yeah, like I said, scary.

It was a long big day.  By the evening we were all exhausted.  Airica seemed to be doing well so far with the chemo drugs, and was pretty tired.  She asked me to sleep with her in her bed all night every night and hold her.  I agreed.  I was scared because she was so fragile and she had so many IV's and tubes.  In her raspy little voice, she told me she was okay and wanted me to hold her. I kissed her face, gave her a squeeze, and told her how proud I was of her.  It's quiet for a few moments.  Then I hear her call me, "Mommy".  I said, "Yes baby, Mommy is right here."  Then she lifts her arm to show me that once again she removed her feeding tube.

TGIF

May 29, 2009

Today was Friday.  A big day for all of us.  It started off with reinserting of the feeding tube.  Yup, she pulled it out again.  Then we had some meetings with the oncologist, because they needed to start her chemotherapy on Saturday.  What she was getting all dolled up for was that her other Daddy was coming back on Saturday and she wanted to look her best.

It was an Airica spa day.  She wanted a shower so badly, but wasn't allowed to until she got a physical therapist's okay to get up more than into a chair.  So I improvised the best that I could so she could feel clean and beautiful.  I, along with some assistance from the nurse, gave her the best wash cloth bath/massage that I could create.  Then, fresh lotion for smelling good, baby lotion her favorite.

The nurses knew this awesome trick to wash hair from a hospital bed, so we found the smellingest good shampoo that we could and washed her thick brown hair.  Then I was able to dry it with the blow dryer and curl it up so fancy for her.  She looked at herself in the mirror and loved it!  She was feeling better, doing better, and even looking better.

Even though it was a fun spa day, I still had to sit through the chemo plan.  We had been worrying about her lungs and survival this had been on the back burner for a while.  Unfortunately, it was still there to deal with.  She would be on all kinds of chemo drugs.  It would be one week of drugs throughout the day, and three weeks of rest and recovery.  This would be for six months.  She would lose  her hair, and she would lose the ability to have children of her own.  I was so happy that there was a treatment for her, yet my heart hurt because of the things that she would have to give up. 

We were not going to worry her with these details right now, and I was going to try to not worry about them either.  After all look at her, she just beat full respiratory failure, due to who knows what still, when she was given a 30% chance to survive one night on life support.  All those details aside, she was amazing and strong.  I was so happy and proud, and she was in such good spirits, and smiling.

Today is the Day

May 28, 2009

  

Today was the big day that the breathing tube would come out.  It felt far different from the last time.  There were lots of people there to witness another miracle.  Airica was ready too this time.  She knew today was the day that that yucky breathing tube would be removed.  She could hardly wait.  But she would have to.

Like I said there were a lot of people gathering to witness this highly anticipated event.  Lots of nurses, RT's, and doctors.  Even the doctor that had told me that had worked endless hours to get her on the heart bypass machine was there.  She would be the one who would do the honors of taking it out.  She was amazed by Airica's recovery so far, as were we all.  This was a wonderful day.

The whole procedure took only seconds.  It was out!  Airica coughed and they helped her clear her throat.  She was breathing on her own, and getting oxygen from our air.  It was a day to celebrate.  The first thing they did was so her upright so her lungs could finish healing on their own.  She was out of that hospital bed for the first time in a LONG time. 


I got to hug my baby girl.  I got to hold her in my arms.  She was so weak still but she wrapped her skinny little arms around me and said in her raspy, whispery, hoarse voice, "I love you momma."  I held her and cried tears of joy.  I had waited, for what seemed to be an eternity, to hear those words and feel that hug.  It was well worth the wait.


There was a lot of activity that day, lots of visitors, Aleena and her family came by which lit Airica's face up. She couldn't wait to show her BFF her new laptop. As the day passed and people came and went, I was still amazed and so full of joy.  Airica was pretty tired by the end of this beautiful day. Her eyes were heavy, her blinks were long, but that smile was shining.  I went to get her all settled, tuck her in, kiss her face, hug her tight, and I hear one more time before she nods off, "I love you momma." 

Are We Ready?

May 27, 2009

Today the breathing machine was lighting up, beeping, and just plain acting weird.  The nurses rush in and page the RT.  We are a little worried.  Airica is just lying there sleeping soundly.  What the heck is going on?  Is this going to be a downhill day for us?  Please no!  Not after all this progress, she needs to keep getting better not worse.

The RT comes in to examine her and make sure the machine is working properly.  They determined that Airica is breathing so well on her own she is actually fighting the machine.  So, the machine will release oxygen and she should inhale, then exhale.  She can now control her breath, so she can feel the moment she should inhale and won't (not can't, won't) then the machine alerts go off.

This was so crazy to hear.  She was definetely ready to be done with the machine.  When she woke up we talked to her about her breathing.  We explained that she should just breath with the machine and that it would be taken off soon.  She explained she wanted it off now, and she was okay with pulling it out herself.  Also, that she would control her inhales not that machine.  She also thought it was very funny that she could make the machine beep.  I did not think it was funny.

The doctors agreed that tomorrow would be the day that her breathing tube would be removed.  We were all so happy.  The doctors, nurses, and RT's were so happy too, and wanted to make sure they were there tomorrow to see it.  I was very happy, and this time if felt right.  But I still couldn't help but be a little nervous.  Ready or not, it was a plan. 

Airica was so excited.  She couldn't wait.  All day long she was pretending to pull the tube out herself.  She thought she was very funny.  I freaked out a little each time.  She also thought that was very funny.  I am glad that she was being so entertained by my worry.  One more night baby girl and you will be free of one more machine.

(This is the last journal page)

Who is your Hero?

May 26, 2009

(Airica's lungs when lung issue started and now)

The doctors are telling us how amazing Airica is doing and they feel that the breathing tube will be removed soon.  They could tell us all they want that she is doing amazing, but we can see it.  She is really here.  She is breathing, she is joking around, she is being adorable, and smiling all the while.  

Now it's time...remember the feeding tube?  Even though it is the last thing that any of us wanted to do, we had to take her down to reinsert her feeding tube.  We had to go down to radiology.  They had to x-ray her chest and use that x-ray as a guide to feed the tube from her nostril all the way down to her stomach.  It didn't sound like fun at all, and it wasn't!

Our RT had to be there to monitor the breathing tube and portable oxygen.  Our RT that day was the beautiful Micaela.  They made a first attempt to insert the tube and it failed.  It gagged her, made her eyes watery, and caused her to need a rest in between attempts.  She was wide awake for this procedure.  As we waited for the second attempt, Airica flashed smiles at the radiologists, nurses, Micaela, and Christopher and I.  It was as if she was telling us all that even though this was very uncomfortable to her, she knew that everyone was there to help her.

I looked at this smiling girl, I placed my hands over my heart, and I told her that I loved her so much, I was so proud of her, and that she was my hero.  As I said those words to her she sat up as much as she could, with what little energy she could muster, looked me in the eyes, lifted her arm pointing at me then at Christopher, and moved her lips to say, "No, you are MY heroes!"  This brought me to tears, as well as everyone in that room that day.

The second attempt was a success.  The feeding tube was in place, for now.  We journeyed back up to the room.  Airica slept restfully after this action packed day that she had.  I was still in awe of what had happened in that room that day.   

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. 

Lao Tzu

She's Back!

May 25, 2009

Today Airica was doing even better!  They did the routine daily chest x-ray and her lungs were close to normal.  The doctors said the remainder of healing would be from her breathing on her own, sitting more upright, and even standing.  Those steps were still to come, today we focused on breathing on her own and basic commands.  

When the doctors said basic commands I am pretty sure they meant us asking Airica to blink or lift her arms, but we got much more specific demands from Airica.  She wanted to see her presents, she wanted me to read her all her get well cards, and she wanted Hannah Montana 24/7.  She was snapping her fingers at us to get our attention, she was giving us thumbs up for what she wanted and thumbs down for what she didn't.  She was so silly, funny, and she was the one one dishing out the commands.

As you can see from the picture one of her gifts was a laptop computer.  She was so excited to have her own computer.  She wanted it set up in front of her so she could see it.  She looked at it and was so grateful for such a big gift.  She lifted her hands to the keyboard and she realized she had little control over her fingers.  She was sad and very confused.  She looked at me in disbelief, wanting an explanation.  I told her that she had been asleep for a long time, her fingers were out of practice, and it would take some time to get back to normal.

Airica didn't like that answer too much.  She had a laptop to play with and she needed to text ASAP!  She was back to her almost normal self.  Still, she couldn't talk but we could hear her loud and clear.  She insisted on trying to press the buttons on the keyboard.  She was so determined.  

 If you notice there is a small tube in her left nostril, that was her feeding tube.  It gave her the nutrition and vitamins that she needed while she was asleep and couldn't eat.  She noticed it and she disliked it just as much, or maybe a little more than the breathing tube.  She was very awake and could comprehend the things that we were saying to her and she would respond in her own way.  We told her we would loosen her arm straps so that she could move around and wake up her atrophied muscles but that it was very important that she not mess with the tubes.  She nodded in agreement.

 She totally tricked us.  As soon as no one was looking, she grabbed a hold of that feeding tube and pulled it out.  At first we didn't notice.  She was smiling so big and was so happy, then she lifted her hand to proudly show me that she had removed the tube.  I was freaking out!  Airica is crazy!  I know we already determined that...but seriously!  We had to tell the nurses who thought it was pretty funny.  Then they proceeded to tell her that it had to be put back in, but that it could wait until tomorrow.  

Airica won that round.  She was so happy to have shed another attachment, even if only for the night.  It was pretty late and Airica was was wide awake and full of energy.  I knew it was going to be a long night.  I was ready!

Airica, You Rock!

May 24, 2009

WOW!  That was all I that I could say today.  Airica was awake, moving around, communicating, and as you can see smiling.  She couldn't talk because of the breathing tube, but she sure could communicate!  I was so happy, laughing and soaking up every minute of her silly self while she was awake.

Today they were also going to turn the settings off on the breathing machine.  She would still be using the breathing tube to make sure that she got oxygen, but as far as the work of breathing, that would be her.  They were very cautious this time before attempting to remove the tube, but I knew it was close.

Once the machine was off it was a little scary.  Her normal breathing was not as calculated and not as perfectly rhythmic like it was on the machine.  But it was her doing it.  Again I was glued to the monitors watching each breath she took on her own.  Praying that she was ready to take on this huge task of breathing...that we sometimes take for granted...but sustains life.

Airica, now breathing on her own, alert, communicating, and smiling, was incredible.  She even wanted to watch Disney Channel again.  She was still in and out of sleep, but when she was a wake she wanted to hold my hand, and make sure that Hannah Montana or Phineas and Ferb was on her TV.  So you can imagine how her little face lit up when I told her that we had bought her favorite movie for her, The Nightmare Before Christmas.  

It had been a very busy, awesome day.  I really felt like I was getting my girl back.  We settled in for the evening, but not before she motioned to me to play her new movie for her.  I put in NBC (as she called it) and before it began my sweet girl was sound asleep.  I smiled, cried some tears of joy, and watched her sleep, and breathe...on her own.

Sissy's Pluto Got a Breathing Tube

May 23, 2009

Airica had a good yet eventful day today.  They are not ready to remove her breathing tube yet.  However they turned the settings on the machine all the way down and her body took over and she was breathing on her own.  That was a great thing to see.  It gave us all so much hope.  Sometimes it was feeling like with every step forward there were two steps back.  

I would call today only a side step.  The sores in Airica's mouth from the breathing tube seemed to be getting worse.  It makes sense, since the tube was still in there.  The nurses and RT's decided that they would put the tube in through her nose so that her mouth could heal.  This type of intubation was normally done on small babies, but they were going to try it on Airica.  

The procedure was done very successfully, but not without some practice, and a special demonstration that was done on Pluto.  This was Alyssa's Pluto that she gave to her sister while she was in the hospital.  Airica had that along with my little pillow, the whole time she had been in the hospital.  It was very hard to worry about this procedure after being a part of the comedic intubation of Pluto.  

The nurse, RT, and I actually had a lot of fun and a lot of laughs preparing for the procedure.  It was only going to help her mouth heal.  It seemed like is was going to take a lot of tape...well it did for Pluto anyways.

Strangers? Friends?

May 22, 2009

(Airica burying Alyssa and a beach stranger/friend)

Today Airica was still climbing uphill, doing great, being silly, and getting better and better.  My dad had been taking care of Alyssa for the past few weeks and had to go back home on this day.  It was a hard day when my dad had to leave.

He had been doing so much for us all.  First of all he was taking care of Alyssa.  Trying to keep her life somewhat normal.  He would take her to school in the morning then head to the hospital to bring us food or whatever else we needed.  He was even doing our laundry and bringing us clean clothes.  He would chat with Airica, give her love then head back to our house to pick up Alyssa from school then bring her back to the hospital so she could see me, Christopher and visit with her sister.  Then they would head home make dinner and try to keep a normal evening routine.

I know this was a huge challenge for my dad, and a very hard, confusing life for the then 10 year old Alyssa.  I am forever grateful to my dad for dropping everything and doing this huge gesture to help out our family in such a difficult time, in such an amazing way. He had to go and we had to say our goodbyes.  He did get a hug and some awesome Airica time as we sent him on his way.  

When my dad left, a whole bunch of people came to us and wanted to help.  It was amazing.  We really only knew a handful of people, and not very well, because we hadn't even lived in California for a year.  That was the amazing part!  A neighbor that we didn't really know took over bringing us food, the neighbor that Airica went to church with took over helping with Alyssa.  Then people started arriving at the hospital that I had never seen in my life.  Bringing gifts, food, cards, and wanting to see Airica expressing their love and concern.

 Airica had touched lives so much, that these people loved and cared for her, and I didn't even know them.  They would tell me how they knew her, some were from school, but most were from church.  Then they would tell me some wonderful story of love, compassion, or act of kindness that Airica had done for them.  Airica could make friends with anyone and everyone she would meet.  It was a wonderful gift that she had.  I was overwhelmed and so proud of this wonderful person, my daughter, making these grown-up relationships and being loved by so many.  It was a moment when I found out that she was listening to all the things I was teaching her, she was growing into a wonderful young lady.

Airica had been in the hospital now for about a month.  I have met a whole other side of her.  When we came in I was holding her hand and comforting her and worrying about my fragile child.  Today that image I had of her has transformed.  I see this beautiful, brave, young lady who can handle anything because her strength is miraculous, and her heart is so full of kindness she has made all these strangers to me, friends that love her.

Thank you dad, and all the countless selfless others.

Crazy Airica

May 21, 2009

Today Airica is already doing better.  The adjustments that the doctors made were working like a charm.  She was waking up more and being a little bit crazy.  She was on some pretty serious medicines, so being a little loopy was not out of the ordinary, but Airica was crazy!

She was slinking down in her bed so much we were having to continually lift her back up.  I mean lift her up readjust her, untangle her feet that were wrapped around that bed bar like two monkey tails!  She was slinking down so that her face would be closer to her hands so she could tug at her breathing tube which she wanted off so badly. 

Airica's craziness is not anything new.  This child has given me so many crazy stories in her beautiful little life.  Like the time that she ran out of lunch money at school because everyone was so hungry for breakfast so she let them use her account.  Or the time that she found a family of rat babies that were abandoned by their mother and hid them out in the YMCA locker room so she could be their mother so they would survive.  Remember the YouTube craziness?  She had her teacher so wrapped around her little finger she went to school early just to play on her Macbook and be silly with her best friend Aleena.

Speaking of Aleena, here is the craziest story of all.  Airica started 7th grade at a new school, in a new state so she didn't know anyone at first.  She met Aleena in one of her classes and would hang out with her at lunch.  Airica swore to Aleena that she was a vampire.  Airica was a HUGE Twilight fan.  As she read the books she would come out of her room crying about whatever mess Bella was in.  Christopher had to go on book release days to get the newest books and fight crazed fans to get her the next book in the saga.  So, this is why she wanted to be a vampire and told Aleena she was one.  This went on for a few days. 

I'm sure that Aleena wanted to believe her, I mean, how cool would that be?  My new friend is a vampire.  Well, Aleena kept telling her that she didn't believe her and that if she was a vampire for real, that she would have to prove it!  Then, Airica bit Aleena.  Yes, really.  She bit her, not too hard, she didn't break her skin, barely left a mark, but yes, BIT HER!

She came home and nonchalantly tells me the story, then adds that she had to do it to prove it.  I was freaking out!  My 13 year old bit someone at school!  I told her she was NOT a vampire and that was such a bad choice.  She said that she is pretty sure that Aleena now believed that she was a vampire.  "Airica Moore!  You are NOT a vampire!"

I worked in childcare for so long that I knew the terrible, horrible reactions that parents had when their child got bit...when it WAS an age appropriate issue.  I seriously didn't know what to do.  I was freaking out.  Should I call her mother?  Should I wait and leave it alone?  Should I call the school?  OMG!?!  As I thought this I asked Airica if she had her phone number in case I decided to call her mom.  She told me that she did and then explained they were now best friends and they had talked about Aleena coming over then next day after school for dinner.  She added that Aleena's mom would drop her off and meet me when she came. Um...ok...I guess?  Wow!

Aleena's mom came to drop her off the next day.  She was so sweet as I apologized for my child biting hers.  She then proceeded to tell me that Aleena was about the same level of crazy.  They were a perfect match of crazy.  I was relieved but still made it VERY clear to Airica she cannot bite anyone else, they would just have to believe she was a vampire with faith alone!

So, this crazy child here in the hospital, is my perfectly crazy girl who thinks she a vampire (yes still).  Tracy, Aleena's mom and I got into some crazy ourselves together.  So, I guess they came by it honestly.  I love crazy!  I love Airica, and I will take her crazy any day over boring normal.

Adapt, Adjust, Accommodate

May 19 and 20, 2009

(My accommodations) 

Do to others what you would like to be done to yourself. Love thy neighbor as thyself. Adapt, adjust, accommodate. Bear insult, bear injury. Unity in Diversity. We are parts of the same body. Practice humility in action. Beware of power, fame, name, praise, censure.

~Swami Sivananda~

The past couple of days in the hospital were a little crazy.  Yes, I was asleep in a chair.  Airica was still so sleepy, actually too sleepy.  Because of that I actually got some good sleep, in that chair.  The doctors were starting to worry about the fact that Airica was so sleepy and not responding very well.  Especially since she has been so active while on the full life support machines.  

They made some adjustments on her machines, did some med checks and even decided to weigh her to make sure she was getting proper doses.  As you can imagine they couldn't just have her step onto a scale.  They have this crazy contraption of a swing, lift type of scale.  They placed the blanket type thing underneath her (nurses can amazingly change sheets on a whole bed underneath a patient like magic!) strapped it up and lifted her up to weigh her. It was so strong yet so gentle it was like you would imagine the stork scooping up babies into their little packages.

They had determined a few things by the end of this day.  Airica has lost a significant amount of weight over the past few weeks, all of her doses needed to be adjusted to accommodate her new weight, she seemed to be having a reaction to one of the meds, and they needed to do a more comprehensive check of her brain activity.  All of those things were taken care of and an MRI was on the agenda for the morning.

(Our adaptation of snuggle time)

That night's sleep wasn't quite as restful.  I was so worried.  Again, she had been doing so well, and this was a little stressful.  I felt really bad about the breathing tube removal and how it failed.  Did that cause the current issues?  The not knowing and the wandering mind always causes so much harm from worries and stress.  Especially when it comes to our children.

The MRI was a pretty scary thing...for me.  Airica was sleeping so soundly the whole time.  The doctors and nurses made special arrangements for me to go with her into the test.  Not inside, but I was able to sit there and hold her hand during the 45 minute test.  She had to stay still, which no longer seemed to be a problem for her, now it was the problem for us.

(Hairstyle adjustments)

The MRI room was creepy, very quiet, cold, and the test seemed to take forever.  I held Airica's hand and followed what I had learned from the nurses and explained to her step by step what was going on.  I also added a bunch of I love yous, you're so strong, and we need you to wake ups, in there as well.  After what seemed to be an eternity the test was finished.  


They wheeled Airica and her whole bed back up to her suite in the PICU and there we waited to hear about the results.  After what felt like another eternity, they finally came in to talk to us.  Her brain function was completely healthy.  They told us to be patient and give the medicine adjustments a couple of days and she should start waking up more soon.


Adapting to many things in life is a challenge that I learned at a very young age. I can deal with a lot of things.  I think of myself as a pretty strong woman.  This fight for Airica has been my biggest and hardest by far, and I am giving my all, trying my best, but I know it is not in my hands, it is not my fight.

My Sleeping Beauty

May 18, 2009

Today, Airica sleeps.  She was not very active today like she had been.  Yesterday had taken a lot out of her and her body needed to recover and rest.  Since she was resting we decided to rest this day too.

As she laid there sleeping so peacefully I could't help but stare at her and watch her breathe.  Yes, she did have the breathing tube still, but I could now see her chest rise and fall as she slept.  I could also see her move her head or her hands as she woke up just enough to readjust herself.  I could see her feet tucked under the bar at the bottom of the bed.

I watched her like I had when she was an infant.  Actually, I never stopped watching my babies sleep at night.  I still do it to this day.  There is something that draws me to the sight of my babies sleeping so peacefully and resting quietly.  As you can see there are a few pictures of the probably too many that I have taken.

I felt a little crazy about it at first.  Sneaking into the room at night, creating enough light so I could see a little face, keeping so quiet as not to disturb the beautiful slumber.  But as crazy as I felt, there was just something that I loved about it so much.  It was like the sleeping breaths were inhaling air and exhaling love, and I had to be there to soak it in.  Somedays would be rough parenting days with serious discussions and even dishing out consequences.  That's definitely not my favorite part, but it's one of the parts.  Those days too, I would go in the room and sweet snoozes I would witness and still feel that love. 

That is what I did most of this day while I sat next to Airica's bed.  Watched her sleep, sent her love, felt her love, and stole the only thing worth stealing...a kiss from my sleeping child.   

Things Come in Their Own Time...Not Ours

May 17, 2009

That statement is SO true, whether we like it or not.  Whether it was part of our plan or not.  Why does it always feel like the more we want something the further away it gets? I think it has something to do with focusing on the "wanting" and not the issue, situation, or current state of the present moment.

Airica had been doing so well.  She had been healing faster than anticipated, and machines were were coming off earlier than planned.  Why would we not expect this trend to continue.  Her lungs were working on their own when they lowered the settings and it seemed as if she would be ready to breathe completely on her own very soon.

We were so exited to hear this news and couldn't wait to take the breathing tube out!  Then she would be one more huge step towards her normal self.  I would be able to hear her voice again.  Which I longed for and wanted so badly.  She would be able to flash her beautiful smile at the nurses, and make jokes with the doctors.  Something that they had been missing as well.

After lots of discussion and faith in Airica's strength they decided today would be the day.  She wasn't quite as active today but we all thought she was ready, and wanted her to be ready so much.  We all stood around her room as the doctors prepared to remove the tube.  I was scared, that scary feeling I felt when they took off the canullas, praying that everything would go smoothly.

The tube was out.  It didn't seem as wonderful as our other triumphs, and I didn't like that feeling.  I expected Airica to have the tube removed, clear her throat, and say, "I love you Mommy!" that wasn't what was happening.  

I know that is a little much to "want" or expect, but look how great she had been doing.  As they were making sure that she was doing okay they realized that she was very drowsy.  She was still on some sedation meds and that may have been a contributing factor.  She wasn't responding to commands like open your eyes, or cough.  She had some sores on the inside of her mouth from the tube being in one place for so long.  Upon removing the tube they began to bleed and went into her empty tummy...and of course making her nauseous.

The doctors felt that these things could be dangerous, because her lungs were so fragile, and when she threw up, liquid would fall back into her lungs.  They had to intubate her the same day they removed it.  This was a very difficult day for all of us that were involved.

I was so heartbroken that today wasn't the day.  I was so scared because the procedure didn't go as planned.  I was also grateful that she was back on the breathing machine and settled down versus the craziness of the day.  

It wasn't time.  She was still doing well, still healing, still fighting.  She was doing all she could.  I needed to do what I could, be patient, love her, and remember that things come in their own time...not mine.

Definition of Beauty?

May 16, 2009

(A goofy picture of my beautiful family)

There are many different ideas, opinions, and concepts out there of what beauty is.  I think that the the definition of beauty can be endless, similar to the definition of love.  Like what it means to me, what it means to a couple in love, what it means to a child, etc.  To me beauty is not always something that you can see, it is more of a way you feel, or how someone or something makes you feel.  That's where it gets tricky.

Often we get a new shirt or a new pair of shoes and we exclaim that we love them!  They make us "feel" beautiful.  That's the feeling that's not real.  What happens when the shirt gets old and ripped or the shoes are scuffed and worn?  We don't feel like we did at first.  We no longer "feel" beautiful in our old things and we "feel" like we need new things to make us "feel" beautiful once again.

What about the way we feel when our children hold us in their tiny arms and close their eyes and tell us, "I love you Mommy!  You are so beautiful."?  That's the feeling!  You can close your eyes and "feel" the beauty.  That one lasts and that's the way that I feel about beauty.  It's very close to a loving feeling, and it makes you feel so beautiful inside and out.  Not by any physical definition whatsoever and it's so powerful you can even overlook any idea of beauty that you could "see".

My family is the most beautiful thing that I have ever known.  There is so much love, so much strength, and so much compassion.  Everyday I am grateful that was blessed with such amazing people to share my life and love with.  

Airica continued to gain strength and heal slowly as each day passed.  Her strength and courage...amazing.  Her beauty...overwhelming.

Love, Love, Love

May 15, 2009

Today was a good day.  Airica's tests and monitors were showing that she was doing better as each day passed.  We were all doing good too knowing that we were on an uphill spiral.  Alyssa was doing especially good after her wonderful visit with her sister.  The rest of us were still in awe of the love that they shared and that we were able to witness.

One's sister is part of one's essential self, an eternal presence of one's heart, soul, and memory.

Alyssa blogs today:

Most siblings don't get along a lot of the time, however me and my sister were the exact opposite. She was like my hero. She loved me like a mom, scolded me like a dad, and we shared secrets like best friends. To me, my sister was the coolest! She let me wear her make-up, talked to me about boys, and always let me sleep in her bed with her.  I love her.