Dirty Little Secrets

Over the years I have come to realize just how terrible I am at handling any sort of tragic situation. Each time, an insane amount of nervous energy washes over me.

I can speak in public until I am blue in the face, but something about tragic events completely stops me in my tracks.

I can tell you of a few instances which I have handled poorly:

When I lived in Lake Tahoe I used to babysit our neighbor's children. I loved those two little boys so much. Over the years, I watched them grow up.

A few years ago, I found out the younger of the two died in a tragic car accident. I was devastated. I did not know what to do. I had no idea how to handle the situation. Should I call? Should I go over and visit? I did not know what to do. I was wracked with nervousness. I had no idea what I would say to his parents....his brother.

What did I end up doing? I sent a card and tried to express my deepest, sincere sympathy. Not good enough. As I said, this was a few years ago. Have I been over since? Have I showed my face. No. The answer is no!

I feel terrible about the way I handled the situation.

Another example of how poorly I handle traumatic occurrences:

My neighbor's husband had cancer and there was a time when he was doing much better. The two of them were walking by my house one day and I asked how they were doing. He said something like, "well other than the cancer being back, great." I froze, I did not know what to say...I said nothing. No worse than that, I acted like I did not hear exactly what he said because we were many, many feet apart from each other. I shut the door and was so disappointed in myself. I was so upset about the news. I was so incredibly upset by the way I handled myself!

Once he passed, I walked over and basically shoved a card and flowers into my neighbor's hands. I hugged her and had no words.

I have another neighbor whose wife has cancer. I found it so hard to inquire about her. Not because I don't care, it's honestly quite the opposite. I always wanted to, but could not as much as I desired.

I have now been forced to “kind of” know how to handle future experiences of the people around me. There is nothing like going through something yourself, and experiencing how you best want to be treated.

I have learned so much. I constantly sit in amazement as so many step up and help us in countless ways. I picture myself in your shoes and know that in the past I could never have handled "us" in the way you have. Not because I did not want to, but because I always had a way of standing right smack in my very own way.

I know that everyone handles things differently and people have different levels of getting offended. Overall, I honestly think people mean well in whatever way they express their condolences. I think if someone says the wrong thing, it is more out of nervousness and unease rather than anything else.

I have truly appreciated everyone who has come to us, in whatever form, and expressed their sympathy for our situation. I also completely understand how some keep their distance or say very little.

I am so full of regret for the way I have handled myself in past situations, but have grown up and learned (the hard way) the way I hope to help people in the future.

I want to express my heartfelt apology to Jill, Rick, Brandon, Eugene, Kamilah, Ruth and Nita.

What a Little Pro...

Aviana was so sleepy while waiting.

Lambie has been with her through 5 out of 7 surgeries.

What a doll!

This sight felt all too familiar!

She fell asleep while waiting. Sadly, I think she feels comfortable in the hospital!

I gave them Aviana, and they gave me back Giovanna!!

We thought her hair was just wet, but no....that "do" was hard as a rock!!

Superstar

After a very long day at the hospital, we are finally home. Aviana did great! She is all cozy and is doing really well right now. With each passing day, this little girl never ceases to amaze me. I must have taken one hundred pictures and will post some when I have time.

It was so strange to be spending hours at the hospital again. The only difference was, that at the end of the day, she leaves with us!!!!!

And the Winner is…..

Janice Janice Janice Janice

No one actually guessed the name of the blog, but Janice was the closest with her guess being a Beatles song.

Congratulations…..you have won a one-pound box of See’s candy!!

Janice, please send your address to jen@serendipityscraps.net and I will have your certificate in the mail tomorrow!

Although there are no other prizes, I wanted to mention a few runner up winners:

Trina for most guesses in one single game.

Anonymous for funniest answer of the day..."Buck Me."

Thank you all for playing. This was the perfect distraction to keep my mind slightly occupied from todays events.

I had a great time and, as always, appreciate every single one of you who take the time to read our blog!

Thank you also for the well wishes for our family today. We are off to the hospital....

Cue....Jeopardy Music!

Challenge:

Be the first one to send me the title of my newly designed blog.

Hint:

The answer is buried somewhere in the depths of this long-winded blog :o)

Prize:

A one-pound box of See’s candy! I will send you the certificate and you can pick all of your favorite candy!!

Under the Sea

I must start by saying the hospital staff of all three places Aviana was taken to saved her life.This is an absolute fact, and for that I am eternally grateful. That being said, I have been reflecting on some of our experiences within those almost 3 months.

There was a quick lesson to be learned within the walls of all of the hospitals we visited. In our situation, the lesson to be learned was put out there immediately and was re-taught by many of the passing doctors and even some of the nurses. It did take some time to understand. It was plain and simple though. Sink or Swim. That’s it, that’s all. Such simple words, but so difficult to implement within those walls. Upon entering the hospital setting, we felt as though we were dropped in the middle of the ocean without a life preserver.

For the first 2 weeks of our journey, we were sinking. We were not just sinking, but it was as though someone had tied 1000-pound cement blocks to our feet. Every which way we turned, it felt as though a ferocious beast of some sort, was pulling us under. We were unable to breath. Continuously gasping for air. We were screaming for a lifeboat, but no one was listening. Those first 2 weeks were a living hell. Did it get much better? Slowly. Very slowly. The real difference was that we finally grew a thick armor of gills and began to swim.

We learned to navigate through the oceans tumultuous waves. We were able to weave in and out of the coral reef unscathed, for the most part. We even dodged some sharks. We almost never got lost in that ever-stretching, vast ocean. Luckily, our armor grew in with a slippery surface. This happened to be our very best defense, we were able to let things bead up and roll off.Our family traveled as a school of fish. Constantly helping and protecting one another from the countless attacks of complete and total pessimism for our situation. We had to pick each other up sometimes after a brutal sucker punch.

Aviana underwent 6 surgeries while in the hospital. I was as tough as nails, scribbling my signature across many pages of authorizations. Listening as the doctors explained all of the many side effects, infections and possible death scenarios.

On Thursday, this little girl has to go in for her 7^th surgery. Ever since Aviana left the hospital, we have noticed a very sharp point on her head. We were unsure if it was just the way her skull came together at that particular area or if it was a screw. If you have been to our house since September….I’m sure you have had the pleasure of feeling it. We are somewhat mystified. We have had many of Kaiser’s staff and others feel it to give us their take. We had come up empty handed in finding out exactly what it was.

My Mom and I took Aviana to a follow up CT scan and neurology appointment and the doctor immediately said, “That’s hardware and it has to come out as soon as possible.” It is one of the 40 screws in Aviana’s head and it has worked its way loose and is looming just under the surface.

As the days to her appointment have dwindled down, I have discovered that I have shed every last bit of my thick slimy sea skin. I left my sea legs in the ocean at the hospital. I am all squishy inside and out and am truly dreading this appointment. I do not want her to have to go through this. I do not want to sign her life away. I do not want to see her cute little face wheeled down the hall, yet again. I do not want to wait hours on end for her safe return. I am so scared and am in complete wonderment as to how we all managed our hospital stay.

Please, please send every good thought you can Aviana’s way on Thursday. Thank you so much.

I have one question before I go…..were they trying to tell me something by the décor within the PICU? Were they secretly whispering in my ear, Sink~or~Swim lady.

I thought it was just plain good decoration for the youngsters. Ohhh, how naïve I was! In retrospect....the fish do look a little scary to me.

Wanna Play?

If you know me, you know that I LOVE games. I think they are so much fun. As I get older, I find it is hard to find other people who like to play games as well.

What fun is a blog without a game?

What fun is a game without a prize?

It's just a one question game.

If you want to play, check back in on Wednesday at 10 AM….PST!!

The Special Mother

Whenever I am feeling down, there is something I can read and it cheers me up almost instantaneously. This poem was written by Erma Bombeck and was read to us at the institute in Philadelphia. When they had finished reading, I don't believe there was a dry eye in the place!! I hope you like it......

The Special Mother

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, he instructs His angels to make notes in a giant ledger.

“Armstrong, Beth: son. Patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecilia.

“Rutledge, Carrie: twins. Patron saint….give her Gerard. He’s used to profanity.”

Finally, He passes a name to an angel and smiles. “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” says God. “Could I give a child with a handicap to a mother who does not know laughter? That would be cruel.”

“But does she have patience?” asked the angel.

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps. “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied.

“She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Momma’ for the first time, she will be witness to a miracle and know it? When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see--- ignorance, cruelty, prejudice---and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in mid-air.

God smiles. “A mirror will suffice.”

Forget~Me~Not

Aviana had a certain sweetness about her. Right along side that sweetness, you would find the most polite little girl ever. She was adorable. It was obvious that she cared for you with every ounce of her little being.

As I look at her throughout the day, I sometimes can actually hear her little voice. This is what I am hearing today….

Every time I would hand her something she had asked for, she would say, “Canck you Mommy.” Which later evolved into, “Thank you Mommy.”

Whenever we told her bedtime was approaching and asked her to put her toys away, she would say, “No thank you Mommy!”

Whenever someone would sneeze, without a doubt, you would hear, "Bless you, Mama." or "Bless you, Nana." My all time favorite was, of course, "Bless you, Kama!"

When she woke up in the morning, she would greet the day with a big smile. She would walk out of her room and down the hall. This is the beautiful sound that followed, "Hi Kama, Good Morning." "Hi Zoe, Good Morning."

Whenever anyone was getting out of the shower and she heard the water stop, she would drop whatever it was she was doing and come running. I can actually see her rounding the corner at mach speeds now. Upon stepping out of the shower, you would be greeted by a pint sized beauty who had your towel in hand. She would so excitedly, yet calmly (as though she had been standing there the entire time) say, “Here you go Mommy!”

She was so cute and polite that when she sat at the table, she would take her napkin and put it on her lap. It was the cutest thing ever.

Remembering her is excruciatingly painful and sometimes I just want to forget.

Forgetting her is equally painful and sometimes I just want to remember.

Revitalize

A face-lift is in order!

An over haul, if you will.

A completely new look, but with the same old feel.

Help..... is what it so desperately needs.

My blog design is so sad and sorry, but it sure has served me well. It all started out of desperation and nothing has been touched or tweaked since. I haven't even had the time to figure out the simplest of things. I have decided to make time!

My blog is my friend....my confidant......my therapist......the keeper of all of my deepest and even darkest secrets. Do you remember when Judy Jetson used to lay on her bed and talk to her digital diary? In a roundabout way, that is what this blog is to me!

My blog is a timestamp of our lives from that moment forward.

My blog is where I come to gain some much-needed momentum from all of you.

A whole new design is underway. What's it going to be called? What is it going to look like? When is it going to be done?

That's a secret....one that I actually am going to keep....even from my blog ;-)

Can you tell how insanely excited I am!?? (This could possibly be what happens to a girl who never leaves the house and barely has a social life anymore.) No, I disagree with myself; I would be just as excited about it if I were out and about and all over the place!

I hope I love it.

I hope you love it too :o)

Goo Geyser

gey·ser


1 : a spring that throws forth intermittent jets......of green goo!

Today I actually washed and did my hair. Usually, my hair hasn't been washed for an average of 3 days and usually you may find it in a ponytail. I know, I know, ewwwwwww! I'll have you know, those chicks in Hollywood have admitted to rarely washing their hair too :o)

Anyway, as I said, I did my hair today. Fresh, clean, day 1 hair. This is a rarity these days, so when I accomplish this great task, I am very proud!

I was feeding Aviana some hours ago and unbeknownst to me the medication port opened and a geyser of green goo shot straight out and at my freshly washed hair! The green goo did not stop there! It was all over my nice white shirt, Aviana, the couch, the couch pillow, the drapes, the blinds, Kama's bed, the floor and some even found its way on the wall!!!! I was so sad about MY FRESHLY WASHED HAIR!!

Anyway, I guess it's kind of funny now!

This is the syringe.

This is the medication port...which is not to be opened while feeding!

This is the food port, which is supposed to be opened while feeding.

This is what the assembly is supposed to look like while feeding.

This is a sad, sad girl covered in goo.

Perfectly Stated

I received the best comment today, it was just what I needed:


"If our vocabulary did not contain the words trouble, adversity, calamity and grief it could not contain the words bravery, patience and self-sacrifice. Those who face no calamity will need no courage. Mysterious though it is, the human characteristics we admire most grow in a soil with a strong mixture of trouble."

~Dale Turner

Thank you Jessica! I tried to comment back to you on your blog, but I couldn't get it to go through. I love quotes so much and this one was perfect :o)

From Deep Within

I don’t know if you know this, but Aviana was as close to deaths door as one could possibly be. Let me clarify, she was not just on deaths doorstep, but she was inching her way over the threshold. When the doctor finally came in to talk to us, we actually heard these words, "She is not going to make it.” Up until that point, I had never once been in complete and total shock.


Strangely, I was kind of calm, but in disbelief. I thought this was some sort of sick joke. I actually didn’t believe him. I had just seen her. I had just hugged and kissed her goodbye. I had just talked to her. We had just said we loved each other. How could this be? How was this possible? The whole time prior to the doctors’ arrival, I thought she was going to be fine.

As I had made my way to the hospital, I can honestly say, there was never a moment that I thought to myself, “Maybe she is going to die.” “Maybe she won’t make it.”

We are seven months and three days out and these are the thoughts that echo throughout my head. Your body has a funny way of shutting things out or filtering information while in shock and beyond. I am more than thankful for this defense mechanism, but over the course of the last few months, things are slowly, but surely making their way back in. For example, my mom's initial phone call was the worst thing I have ever heard in my life. I used to be able to shut that down completely, actually put it out of my mind just as quickly as it had entered.

Now, my brain plays it over and over and I am not capable of flipping the switch to the off position. I continuously think back to that dreaded day, to the days directly after, and to all of the remaining days that have followed.

Do you know that we had to make life or death decisions for Aviana? Do you know there was no black and white and every which way we turned we found ourselves surrounded in varying shades of gray? As Dave and I stayed up many nights installing our hardwood floors, there were countless moments of silence between the words. Whether silent or spoken, these moments were all filled with the same thoughts. How are we to make a life and death decision for someone else? How can it be that we are supposed to play God? Isn’t that frowned upon? We should not be allowed to make these decisions.

I also cannot forget the question that was visited and revisited one million times, the question that was asked to doctors, nurses and anyone who would listen, “What is your definition of vegetative?” I always envisioned these scenarios as being black and white, not what we experienced. I can honestly say, I do not wish this decision making process on my worst enemy. That phrase is often thrown around lightly and loosely, but I really mean it.

Our decisions have all been made and here we are. As the days turn into weeks and the weeks turn into months, the fact remains, she is unable to crawl, creep, walk, talk, eat and most importantly smile or laugh (you know, all of the simple things that make life worth living.) These are the questions that shine brightly in my face...did we make the right decision? Would Aviana have made the same decision? Is she happy? Does she and will she have a quality life?

What spurred on this blog note? Well, at one point or another, these are all thoughts that cloud my brain on a daily basis. What finally made me put it in blog form was a recent episode on Oprah. The topic was the dangers of cell phone use (mostly texting) and driving. Her guests chronicled the heart wrenching moment that changed their lives forever. I saw myself in every single one of them. I hung on their every word. With each passing sentence, my heart ached just a little bit more.

I now see everything through different lenses. Ones in which I am begrudgingly required to wear. In every situation, I can’t help but wonder, “Were you forced to make that horrific decision for your loved one?” “Is it tearing you up inside?” “Do you wonder if you made the right decision?” As we spent hours discussing what decision should be made for Aviana, I would question Dave, “How do you just decide to kill your child?” “How is that possible?”

After gathering all the information available to us, and going with our gut feeling, we decided to move forward. What if we didn't though? What if that were me up on Oprah's stage? Telling a slightly different story. I can't help but wonder what is best for Aviana? As I often watch her struggle, I can't help but revisit a morbid thought that no mother should ever have to think, "would it have been better if she died on the street that day?"

The thoughts cannot escape me. Like a shadow they follow me around throughout the day. Sometimes I catch a glimpse of that deep, dark creature, but luckily, one or two steps beyond that, lives a built in saving grace. The thought, which is two steps back, never lets me down. It's the one that always persists and remains, in our particular situation, we had to give Aviana a chance. The chance she earned and most importantly deserved.

Who Knew....

I had no idea we could transform our kitchen into a baby food factory! I also didn't know that we could replicate all of the numerous tasks of the heavy machinery within a factory.

I was just wondering.....isn't Sunday supposed to be a day of rest?!! Well, not for us. Our Sundays now consist of getting a full day of therapy in and producing an entire weeks worth of food. During the last two Sundays we concocted 7 meals, one replacement for each day of the week. We had thought that was an astronomical amount of work. Not so. Not so. Today we made 14 meals in order to replace two of Aviana's formula meals.

Can you imagine, next Sunday we will be whipping up a whopping 21 meals. The following week we will meet our goal of 28 fully organic, completely nutritious, perfectly balanced meals a week.

Here’s the process: Dave sits down and has a long, detailed discussion with Excel.

Excel spits out a spreadsheet with exact measurements down to the gram.

Each individual item of food is prepped and weighed on a scale.

Next, all of the food is cooked.

The kitchen begins to look as though a bomb went off within.

In batches, we blend the crap out of the food. (I *heart* you, Vita Mix)

Green and orange blotches of food begin to appear at various places and on various people and sometimes even pets throughout the kitchen.

Once all batches are sufficiently blended to the perfect consistency, they all come together and intermingle amongst each other.

Finally, 14 jars are lined up and evenly filled.

Only one casualty today!

The lids are then securely placed on the jars to ensure not one drop of this healthy, green goo will secretly find its way out.

10 jars carefully (in order to avoid a messier casualty) find their way into the “deep” freezer.

3 jars will make their way into the kitchen fridge to “chill.”

The 1 remaining jar goes directly into Aviana.

I can just hear her saying, “Green goo…GET IN MY BELLY.” Never mind, she never saw Austin Powers, I guess that is what I am thinking.

Two people (unfortunately us) diligently clean up the “havoc” that has ensued throughout the kitchen and beyond.

We take a little breather and get right back to therapy!

Whew, Sundays are exhausting….thank goodness tomorrow is Monday (that was a joke, but I now realize, its not that funny.)

This weeks meal includes: brown rice, chicken, eggs, olive oil, strawberries, blueberries, blackberries, raspberries, carrots, kale, green chard, peas and green beans.

Long gone are the days of throwing together a peanut butter and jelly and sliding it across the table.

I never knew green chard was so beautiful!

So unbelievably beautiful.

A picture of peas...why? They looked cool to me!

On the home stretch I developed a case of "butter fingers." We quickly learned that these particular jars shoot glass in every possible direction. This was such a bummer :o(

No matter

how

you slice it.....

this

is

a

lot

of

food!!

I think she's worth it though!

Aviana was desperately trying to watch the basketball game in this picture :o)

Upside Down

I wanted to start by thanking everyone for sharing in my excitement yesterday. With each passing comment, I could actually feel your enthusiasm!

I have to report: Aviana has become very stingy with her precious little kisses. After generously giving out approximately 35 in bed yesterday morning, she decided she was spent! I can just hear her sweet little stern voice saying, “no more kisses for you, or you, or you!” That's OK. That’s just fine by me. I'll patiently wait until she is ready again!

Anyway, a while ago I read a very interesting chapter in one of the Institutes books called, "Newborns-Right-Side Up or Upside Down." This chapter made all the sense in the world, but there was one particular example they used that really drove their point home for me.

To make a long story short, they discuss the reasons why it is beneficial to turn your newborn onto their stomachs. They go on to say how we are the only creatures who keep our babies upside down. They ask, "Has anyone ever seen a colt, calf, puppy, or kitten lying on its back with its legs up in the air?"

They then go on to explain,

"Now, face down as she was intended to be, with all her brain mechanisms right-side up, we see all the movements of arms and legs become great propulsive movements intended to move her body forward. It is as natural and sensible as what occurs, if you take a turtle who is upside down, thrashing its arms and legs about, and turn it right-side up. Watch all those random and useless arm and leg movements become crawling movements. We may love to watch her face up, but she wants to get moving along the ancient road to walking, and that road begins here."

Ever since reading this, I would look at Aviana as a turtle. Lying there on her back, not able to make any useful movements.

Soon, the floor will be her way of life. I couldn't have found a visual reminder of this fact at a more perfect time. This little cutie adorns my fridge, the place I unfortunately frequent most ;o)

Kisses

The clock reads 9:53 and already it has been a very exciting day in the Hodder household! I grabbed my baby up and pulled her into bed with me this morning. I was loving on her like the gift that she is. Lying in bed with her is one of my very favorite things to do. She is always so attentive. She gazes so lovingly and deeply into your soul. There has always been something magical about this little girl. Dave and I used to always comment, for various reasons, that she was going to be the most romantic person. Some things never change.

This morning was different from all others though. I was talking (without end) to her and all of a sudden she kept opening her mouth as though she were trying to talk to me. As we continued to lie there, she kept opening her mouth in effort of speaking. The only time this girl opens her mouth is to yawn (my second favorite thing, if you have been witness to it, you know what I mean), nothing else. We continued in this way for quite sometime. I continued to give her kiss after kiss and suddenly she began to make the kiss sound and motion back. I did not know what she was doing for the longest time. I kept asking her, “Honey, what are you doing?” I am so out of sync. I finally realized what she was doing and then found myself in total disbelief. I would put my cheek up to her and she would kiss. I would put my lips on hers and there it was again…a real, true kiss. Over and over.

Tears were streaming down my face. I have to tell you, I have kissed this little one a million times in hopes of something. Anything. There has always been a whole lotta nothing. I have put my cheek up against her a trillion times to nothing. Nothing. Nothing. Oh, and more nothing.

I was prepared to stay in bed all day today. Nothing else was as important and exciting than this. I swear, Gary Allan (in all his sexiness) could have been standing before me, guitar in hand, and I would not have left Aviana’s side for a moment. I may have not even looked his way.

After an hour of good conversation and kisses, Aviana was worn out and passed out. Completely out. I started her food, took a shower, made the bed (with her in it, Dave hates when I do that, I suppose it is a slightly crazy.) Everything thus far has been very slow and steady. Minor little things, but little things nonetheless. Today was entirely different.

This day cannot get any better. And it’s only 10:10. That’s my kind of day!