A Look Back at 2008

What a year it has been. A year of wonder, of unknowns, of joy, and of elation....overall a much needed wonderful year. The year began with a pregnancy. I was about 22 weeks pregnant at this time last year. I knew that I was having a boy, but was so nervous about his entrance into this world. I was anxious about his health, my health, and most importanly the impact that it would have on his big sister. I was hopeful for a bond between my two children that was beyond love...beyond the common bond between two individuals.

February was a month to remember. It was the month that I was placed on bedrest for an "indefinite" amount of time. I was having contractions every 2 minutes, and while I was not diatating contractions that close together are not healthy for a uterus that has scar tissue from a previous c-section. So, I laid on my couch and I waited, and waited and waited some more. I once again discovered the numerous friends that care, and I was priviledged to receive visits bi-weekly from my good friend and her brand new baby. This friend knew that her baby was what I needed more than anything else.....because a baby was my light at the end of the tunnel. Her baby girl, Cedar would sit on my tummy and Owen would kick her from within. Funny to see the two of them together now at daycare...stealing each others pacifiers while they laugh and "talk" to each other.

March was the month of a transplant memory. 4 years ago we embarked on a journey to a new life for our infant daughter. It has been a life full of hope and memories, and we will forever be grateful for that.

April was the month of our prince's birth. Our healthy baby boy who has created that bond that I so desperately hoped he would have with his sister. According to her...he's HER baby, and I think that he would agree everytime that he giggles right along with her.

The rest of the months have kind of blended together, but it has been a blend of sweet mixed with more sweet. There has been no bitter blended into this year. It was the year that Emma started Kindergarten, and Mama's tears fell down her cheeks as she watched her tiny bud blossom into the most beautiful and delicate flower ever to be found.

It was the year of Owen's first Christmas, and the first Christmas that Emma would share with her sibling. Sweet memories added to an amazing journey.

Our journey continues into 2009. We hope to create more sweet memories this year. It is already proving to be a joyful one. I hope yours is too.

Our self proclamed Hannah Montana (do you like the outfit that she's chosen? She's our little fashionista)


Little man:)

Happy New Year!

Happy 2009! Wow! I can't believe that it is 2009 already. 2008 was a great one....and it went out with a bang!

Let's just say that my husband is pretty sure that I have been dying my hair...because I really should have been blonde. I'm not sure if it's still just pregnancy brain or what, but I'm hoping that my memory comes back soon. I'll give you just one brief example of what I'm talking about.....so, we went shopping the other day. We went to the new Kohl's store. Well, my husband decided to stay in the car with the kids, so I went in to shop and I was trying to hurry. I finished shopping and came out of the store to see him driving away!!! Well, we were in a city 2 hours away from our house...and I had forgotten my cell phone at home (won't be doing that again). I was pretty ticked, but thought that maybe he just thought that I'd be longer and he would run a brief errand. So, I went back in and did more shopping:). I would come out every 15 minutes to see if he was back yet, and I would get more and more angry each time. I had been doing this for about an hour when I walked out, stood there with my enormous bag over my shoulder (retail therapy for the anger I was building for my husband, right?), when an elderly lady came out and asked if I had misplaced my car too. I said, "No, my husband dropped me off and he should be back any minute". She then said, "You know....I don't think I parked my car on this side". WWWHHHAAAATTT? You mean there are 2 entrances to Kohl's?? I quickly walked all the way around the store, out the door, and there was my husband waiting in the exact spot that I left him....he had never left it must have been someone else:). He was very nice about it...just shook his head and repeatedly said, "Are you sure you're not really blonde?".

OK....on to our kids. The reason that 2009 came in with a bang.....2:30 am Emma wakes up throwing up.....and exploding out the other end at the same time. She threw up for 2 hours straight! CRAZY!!! Then, she woke up this morning....feeling absolutely FINE...and with a ton of energy...that her mama does not have right now:). However, I am glad that she's feeling better.

Here is a picture recap of Christmas...sorry it's long:).
Christmas Eve cuties


Handsome young man (sweet potatoes on his face and all:)


Christmas jammies


A Christmas jammie model in the making


That's the present that I want:)


Christmas day cuties (neither of them was in the picture taking mood)


Handsome little man


Have a safe new year!

Happy Blogiversary

Head on over to Finding Normal http://debbie61497.blogspot.com/ and wish her a happy 1 year blogiversary. Her blog is one that I read frequently...she inspires me to live each day to the fullest with both of my children....plus her little Addison's red curly hair holds a special place in my heart:). Happy Blogiversary Debbie:). Here's to many many more:).

Merry Christmas and "the program":)

Merry Christmas to all! What an amazing day! We've come so far, and today was just....RELAXING! I sat in awe looking at my two little miracles who were loving every minute of life today (and so was I). Just a miracle...a blessing!
This picture was taken on Sunday...the day that we decorated our tree:)...nothing like waiting until the last minute. Today, we were getting ready to go to my sister's house. Tim had JUST put Owen in the car...and our tree came crashing down in the EXACT spot that Owen was sitting...YIKES!! WOW! Am I ever thankful that he was not still sitting there!

Emma's Christmas program at school was AMAZING! Emma was SO into it, and she actually did every part that she was supposed to do (and a few that she wasn't...but, who cares right? She was cute:)). An elderly gentlemas came up after the program to let us know that Emma was the unsung star in his eyes! He said that he couldn't take his eyes off of her. It was pretty tough....she was just so darned CUTE!!! She was a candy cane:).


I cannot even begin to explain the rush of emotions that went through me while watching Emma on the stage. WOW! She's just come SO far! To think that she is in kindergarten...and living every breath to the fullest! It's incredible really!

And....a few pictures of Owen. Em's going through a stage right now (that I HOPE is brief) of not wanting to look at the camera, so taking cute pics of her is difficult to say the least! So, I've been taking a few more of Owen:).

First time eating ribs....LOVED them!




And, of course, the bath afterward


He does clean up well


And, a little thought to leave you with this beautiful Christmas night.....ALWAYS IMAGINE MIRACLES HAPPENING:)

Burning Eyes

My eyes are burning...a few too many tears have been shed. However, that is behind me...and I am ready to forge ahead!
This special needs gig is not for the weak
I must give my all
My eyes must not leak:)

Emma will shine in her Christmas program tonight
She will not jump, or turn or hmmmm? sing into the microphone when it is not RIGHT
Her candy cane costume and her hair up in bows
Will be the envy of every mother who sits in the rows

My heart is heavy and pounding
Practice has been off to say to put it best
But onward we go
After the program we will rest

Random Thoughts...and some trivia:)

This time of the year I find myself being very random. With the pandemonium of activities that occur, trying to finish everything that I need to at school, concluding our Christmas production, getting gifts wrapped/made/bought....it's enough to drive a mama insane. BUT, the saving grace is knowing that EVERYONE else is going through it right along with me.

So, today I am going to have a random post. I'm going to start with a picture that I took of Em this summer that I just LOVE. We stayed at the Ronald McDonald house while Em was having some dental surgery done. The Denver RMH is brand new, and right as you walk in the door there is a child's playhouse. I just HAD to have a picture of Miss Em in it...because the word that is on the top is something I do every single day. I imagine life with Emma....it's something that I am so thankful to be able to do:).


The other night Tim and I were doing our favorite pastime....watching TV:). Emma was playing in her play area...when she comes strutting out...no kidding model walk and all, with this tiarra on her head. She kept saying, "See Mama...I pretty". She would turn and flip her hair then walk a little further. Where DOES she get this stuff?? Too cute!



And the last picture is my TRIVIA question of the day!! Who can tell me what is missing from the picture (wink wink:)!

Tomorrow

Sometimes I wish that I could just make my brain fast forward and my heart stop the quickening that I feel at times like these. I am a person that remembers dates. Tomorrow is not a specific date...but a very specific age. Owen will be 7 months and 14 days old tomorrow, and even typing that makes the warm tears begin to flow down my face. I am instantly taken back to the day that Emma was 7 months 14 days old. That was the day that I prayed a new liver would come for my baby whom I was watching slowly die every single day. That was the day that my prayers were answered...the day that the peace took over my entire being as I handed her to the surgeon who wisked her away to save her life.

Why oh why does my heart hurt so much to think that my baby boy will be that exact age tomorrow? I know that things are SO much different this time around...but, I think that may be part of it. I am enjoying having a baby right now...I love every minute of it! And I feel like I missed out on so much of that with Em. Every aspect of that first year with Em is a blur....except for that day. I can tell you the exact time that day that we received "the call". I can tell you what I was wearing, where I was, who was with me, what they were wearing. I remember every single feeling that went through my mind that day. That day was so euphoric! It was the day where our entire community came together to pray for a little 11 lb baby girl that had so much going against her in life...yet there was so much hope...so many prayers...and they worked! Look where she is today...AMAZING!

Emma at 7 months 14 days old...Love you so much Baby Girl!


Owen at 7 months 13 days...Love you so much Baby Boy!


Such different journeys, but the same Mama love that will never fade!

No Doubt About It....

Emma is DEFINITELY my child:) (Like the 72 lbs. that I gained when I was pregnant with her wasn't enough to prove that). My husband made this announcement this morning, "She may be like me in many ways, but she is definitely showing signs of you in her ability to wake up in the morning!". Apparently, he went to wake Emma up this morning and she said, "No, sleep more....wake up Owen!" as she rolled over and covered her head with the blanket:).

True, I'm not a morning person. I'll be the first to admit that! But, Em always has been, so this is TOO funny!

I'm Still Here:)

I did survive the sleepover, but I am still recovering from being so tired:). Actually, BOTH of the girls were asleep by 9:30 and slept until 7:30...so, I can't complain much. HOWEVER, the girls could give Mr. Owen a little sleeping lesson...he doesn't seem to think that is very important, and this Mama needs her sleep!

Sorry that I've been absent from the blogging scene. Thanks Michelle for checking on me:). I was waiting to upload my sleepover pictures, but haven't had the time yet.

I HAVE however been crocheting...and if you knew me personally you would realize just how funny that statement is. I am known for my "hot gluing ability" as in...if it can't be hot glued...it can't be fixed. But, our family (meaning my Mom, Dad, Grandparents, all of my cousins, my sister and her whole family....everyone) growing up all had the same stocking. Now, Tim, Emma and I all have the same stocking...that is crocheted. However, in the past 5 years my mom's arthritis has gotten so bad that she can no longer crochet. SO, that leaves the big job to me. Well, I got one side of Owen's stocking done and guess what!!! It is MUCH smaller than the rest of ours???? So, I am going to attempt to stretch it. Wish me luck!

We have our Christmas program coming up at school. Emma will make her Christmas program debut as a candy cane. I guarantee that there will be pictures to follow:).

Milestone Alert!!!!

We have reached a HUGE milestone!! Our first sleepover. Em is having her friend Brindi stay the night as we speak. It's 9:30 and neither girl is asleep yet??? Em's bedtime is usually 7:30. They are both just TOO excited! We made gingerbread houses, watched movies and ate popcorn. Oh, and they played HARD!! I hope they'll be drifing off to dreamland soon. I'll keep you posted!

More Polar Express

Let's see if my pictures will work now?

Emma with "Holly the elf". I was so proud of her for standing with the elf. (Notice she's holding Montel...our classroom moose. He goes home with a different child each weekend, and he was SO excited to see Santa)


Here's a picture of the train


Here's Em at the North Pole sign (all of the kids in my class wanted to know "why is it brown"...hmmmm?)


And, here's just a cute picture of Owen on his 7 month birthday. Happy 7 months big boy:)

All Aboard.....

The Polar Express!!!

We went to Boise, ID for Thanksgiving. It was very nice to get away...even if it was a 15 hour drive with 2 small children and my mother in law (now you see how I ended up with the previous post:). Actually it really was fun, and included shopping at 4 am on Black Friday...which has to be right up there with one of my favorite days of the year! You can just feel the Christmas Spirit hanging in the air:).

After shopping that day, we all drove to Horseshoe Bend to board the "Polar Express"


It was so exciting! They had caroling, and milk and cookies. We even got to see Santa (although Emma is still not a fan....I'm pretty sure that she will never be at this point). I did at least get a picture of one of my children on Santa's lap


OK...my pictues aren't wanting to work...I'll have to post them later.

Waiting List for those going crazy:)

So, I did it...I called today to see a counselor. I have times that I just need to sort through all of the "issues" (for lack of a better term) that are mulling around in my head. It's tough because I always think that I can handle it all, but sometimes the weight just becomes too much. It helps me to have a person who isn't biased to talk to, cry to, get mad around, you know.....someone who knows that I am crazy and tells me that it's OK.

Well, guess what....there is a WAITING LIST to meet with someone when you are going crazy!! What kind of sense does that make? Then, the lady tells me that if things get worse to give them a call and they will place me higher on the priority list....well, gee thanks!

The gist of it is...I struggle with the thought of others judging me, my parenting, and most of all....my child. Being around people that aren't around her much (i.e. family from this past weekend) makes me realize how much it hurts my heart that she is not understood...and I cannot help her to be understood. I don't mean with communication...I mean with her actions. WHY does she think that it is neccessary to push her cousin anytime that she wants to play with him? I'm not sure, but I KNOW that it's not just her being a brat....she just can't figure it out....and I can't figure her out....and there is no end in sight. It just makes this Mama's mind go to a very dark place....

BUT, apparently it is not dark enough yet....NOPE, I'm still seeing a little light at the end of the tunnel. If it gets any dimmer I'm sure I'll call to up my status in the looney bin:).

Oh, by the way, make sure to read my previous post. Blogger was being goofy and wouldn't post it correctly. Thanks:).

Thankful

Posted on Thanksgiving Day...I did not have internet access.


How can I possibly describe the thing that I am the MOST thankful for today? There are so so many things. But, as I look at my little girl playing out in the yard with the wind gently blowing her beautiful auburn hair, as I listen to her laugh and make pig noises while reading a book with her Grandma, and as I watch my baby boys eyes follow his sissy around the room as she plays....adoring her every move. I feel my heart ready to explode from all of the love that I have inside of it. That little miracle would not be here today if a liver had not come in time. For that day, that moment, that life changing event...I will always be thankful.

For this I have to be thankful for....however, today is not only Thanksgiving.....

On this day 22 years ago a beautiful little girl was born. The first girl born in her family, she was her parents pride and joy. She grew into quite a remarkable young woman, someone that I would have been proud to have known. She aspired to be a nurse. She was in the middle of her junior year in high school, was loved by all...including her youth group that she was traveling with on a ski trip in Colorado on March 19, 2004. I never did meet this beautiful child, whose parents named Claire, but I feel like I know her very well. A part of her lives in my house and in my heart.

Claire was born 22 years ago on Thanksgiving day. I have no doubt that today is a day of memories for her parents and family. I am sure that it is a day of heartbreak along with Thanksgiving. I'm positive that they are extremely thankful for the 17 years that they had Claire on this Earth. However, I also believe their hearts are aching that they only had 17 years with her.

4 1/2 years ago Claire went to meet her Heavenly Father. Her family made the decision to donate her organs. They made the decision, in their time of extreme grief. The decision that would save my baby girls life.

My heart is filled with sadness today. Happy 22nd Birthday Claire..thank you does not seem fitting. I feel so blessed when I think of how your legacy lives on in my sweet Angel Emma.

The Other Shoe

It is always suspended in the air, isn't it? Precariously perched, waiting...just waiting for the opportune time to drop. When do I quit worrying about that stupid shoe? When does life come to the point that I don't worry anymore? I know...once a parent you never stop worrying. However, this is an unhealthy amount of worry. Although at times it does become less, when it does come back it just hits me like a ton of bricks and consumes my entire being.

The funeral plans...yes, I have planned Em's funeral time and time again. At one time it was a potential reality. Now...why do the thoughts come creaping back into my head? Why do I feel the need to go in and lay next to her every night just to hear her breathing? Rub her soft hair just to feel the warmth?

The fear of rejection....we are 4 1/2 years post transplant and she has never (knocking hard on wood) been in rejection. However, the fear never leaves my mind. The fear of losing this liver..the liver that has given her life....and us hope. The fear that if she does lose this liver that she will not be deamed adequate to receive another transplant.

The thoughts of something being wrong with Owen. Although I know that he is healthy and thriving. The fear still creeps in that something still could go wrong. Why does he continue to get conjested? Knowing that it must be that he is aspirating (I know that he is probably not...but the irrational side of me feels this way).

I have always been one to worry, but given the circumstances of the last 5 years...my worry tends to consume my life at times. Sure, I put on the face to all who pass me by that all is well. But, as I walk tall with my head held high in the air, please watch for the occassional flinch, the odd ducking motion that I may make. It is that shoe that I see...just hanging there...suspended for only my eye to see.

Waiting...waiting....waiting. Oh please, dear shoe, go take a jog! Please leave me alone. I do not want to ever see or feel you drop again.

What, Where and Why?

The "parent/teacher" conference went great! I really think that teacher knows her stuff, and she is such a sweet and kind person (wink), and that parent....WOW! I've never seen a more motivated individual. She knows all of the latest techniques and I can tell that she knows EXACTLY what to do with her child. Yes, I don't think that she ever has a problem controlling her child in any way, shape, or form (not only a wink....but body is going into full twitchy motion here folks).

No, seriously our conference really did go well. Em's special ed teacher joined us in our living room at 7:30 PM tonight...after Emma had gone to bed. We all talked about the amazing progress that Emma has made. We also talked about how much her glasses have helped her, and how much it has hindered her to have broken them (UGH!) and not to have had them the last week!!! It's like she could suddenly see the world....then it's taken away again. Yes, I am planning to get her a 2nd pair, but we need to make sure this is the correct RX before we get another pair. WHEW!! Enough said about that! Em's doing GREAT!

Now, onto my husband. All that I have to say about that is that I love him DEARLY! However, I am coming back as a man in my next life simply so I can pick and chose the times that I get up in the night to help with child #1 or child #2. Grrrr! Why is it I only get a break when HE decides that he can help out? Why can't it be the other way around? I know......because I'm the momma. Good reason. It's just that today I am REALLY tired!

Oh, did I mention that BOTH of my kids have pink eye, my own eyes are starting to burn (I think maybe it's all in my head), AND Emma failed her hearing screening in BOTH ears. So, basically my baby girl can't see right now due to her broken glasses. What she can see is all goopy, and on top of that...she can't hear worth a darned right now either.

What is this world coming to??? CALGON!!! I hear you calling!!! TAKE ME AWAY!!!

To Worry or Not to Worry?

That is the question here. Emma's parent/teacher conference is tomorrow night. Ha! Ha! I am the parent AND the teacher. SO, do you think I should be more worried about meeting with that crazy mom or meeting with the slave driver teacher?? I'm feeling a little bit of a split personality disorder coming on:).

And the Pendulum Swings

The pedulum has swung back to my "normal" state. Whew! Thanks to all of you for your words of encouragement! I hate those dark days, but everyone has them right? Some days it is just harder than others. However, today is a good day. Today is a day that I can sit back and be thankful for all of the good. Today is the day that I know I have "a place". I have great friends, a "close circle of internet blogging buddies", and many others who care.

The thing is....I live in a really small and secluded town. There aren't a lot of places that I can turn to get the support that I sometimes need. Yes, I do have really good friends here, but hey...it's been 5 years, and sometimes I feel like they think I am just whining. NO, I am not whining, but I can see how they might perceive that I am???

One of my very best friends had a son that had a transplant around the same time as Em...except his was heart. His mom and I hit it off from the beginning. That was 4 years ago, and she is still one that I confide many of my insecurities too.

It's just a different path than any of us ever dreamed we would end up on, but does life really ever go the way that we planned?

So, today I am going to take a moment to be thankful for the little things. Like the top 3 things that made me laugh this weekend:

1) Owen has no desire to "crawl"...why would you need to crawl when you can practice your wrestling moves and still get places?
Oh, I thought I had downloaded the picture:(. I will soon, and you will see what I mean. Picture him laying on his back and pushing up into a bridge with his head and feet still on the ground...and moving around the house like that!!! TOO FUNNY!!

2) Walking into Emma using the toilet, "Like Daddy does"...you can use your imagination on that one:).

3) Emma following me around the house all weekend with various books saying, "What do the words say?". I would read the page, she's flip to the next page and start all over again, and again, and again! I am so glad that she loves books, and it is neat to see that she knows that the words say something. GO EMMA!!!

Trying to find "my place"

It's a difficult journey to the land of special needs. There are many potholes and detours along the way. At times the fog is blinding, and other times it is a sweet respite from the everyday challenges. The fog allows you to pretend that life is just peachy...yep, nothing is out of the ordinary in THIS house. However, the fog always clears, and you are left wondering, "Now where in the heck was I headed again?".

At the beginning of this journey it was as if we were thrown head first down an enormous water slide with the water blowing full blast directly in our faces. My pregnancy was fairly uneventful. I suffered pre-eclampsia in the last month and gained WAY too much weight (72 pounds to be exact), but the rest was a breeze. I had to have a c-section due to my high blood pressure. We were admitted to the hospital the night before I would have surgery. The night we were admitted just happened to be our 3 year anniversary. We were so excited to extend our family.

Immediately after Emma was born we noticed all of her long black hair. As people filtered in to meet our precious bundle of joy many commented on "her beautiful olive skin tone". The doctors were commenting on her large thumbs and toes, but we wrote that off as being similar to her daddy's.

That is when it started. Everything about my child that I saw as beautiful began to get examined, photographed, and critiqued. I loved her hair, her sweet eyes that turned down just a bit on the corners, her beautiful little mouth. All of them were described to us as "dismorphic features". Add to that the extreme liver disease that she had that began to turn our precious girl into the color of a banana, and you could see one scared, angry, sad, confused mama who was searching for a new normal....a new group of people who just might understand...just might be able to say to me, "I've been through it too".

I found that exact group when I found an on-line liver support group. I still religiously visit that group. It has been my lifesaver in the liver disease department. For a long time I could hide my head partially in the fog and pretend that liver disease was all that was "wrong" with Em...THAT was the reason for her delays, right? She had 7 surgeries in the first 7 months of life including a liver transplant...she's obviously going to be delayed, right? However, the delays became more and more apparent.

We were told when we first saw the geneticist (the one and only time...story for another day) that Emma possibly had RTS, and it was similar to Downs Syndrome. So, when the delays became more apparent, I came to the realization that RTS was a part of our Emma. I came to accept that, but I so badly wanted to find a place where I "fit in" ...a group of parents that could tell me that they "had been there". I could find very little information about RTS, so I began to follow a few blogs of children with Down's Syndrome. I posted a two comments on two different blogs, telling them about my Emma. BOTH of them e-mailed me back and reprimanded me for comparing RTS and Down's Syndrome....another door slammed in my face...another place where I didn't belong.

Do I have my special place today? I have found more people that I can relate too, but I so badly want and need to find a place where I belong. Does that make me sound like a middle school girl who is insecure? I think that it might? But, it is truly the way that I feel.

Everyone's journey is different, but when you have a journey with a child with special needs it becomes particularly different. Every aspect of my life has changed. I am a better person for it, but a little piece of me just misses that commonality that I used to have with all of my friends. I am no longer one of the pack...I now stand alone...and alone is a very sad place sometimes.

I'M THANKFUL FOR....

I honestly cannot put into words the magnitude of emotions felt today. There were extreme nerves, a few tears, excitement, and a Mama's heart that swelled with so much pride that I thought it might burst.

Today was Emma's first performance in a school program...and she was AMAZING!! Our school has an annual Thanksgiving feast where we invite the community to thank them for all they do for our school. We had a crowd of about 90 people coming, and the anticipation that I felt was unnerving. It's times like this that being her mom AND her teacher is difficult. I so badly want her to do a good job and act like the music teacher wants her to act when she's on stage...you know, to fit in the "mold". Well, yesterday Emma was not going to have anything to do with "the mold". She was going to do her own thing and that was that. So, this morning the music teacher said that she might only put Em in for the last song. While I could feel myself going through the motions of opening my mouth and saying the words, "That's OK"....I was SO not OK with that. Emma had been practicing all of the program with the rest of the school for WEEKS. She was prepared to do the WHOLE program. So, when rehearsal came this morning, and our music teacher lined all the children up and did not say my Emma's name....I could feel the air deflating from my lungs. The familiar feeling came back where I feel like I am being shoved underwater, unable to breath, and there is no one that can save me. Our counselor happened to be there, and she said, "Surely she just missed Emma...isn't she supposed to be up there?". I simply said, "She's going to join on the last song". Then, I made a bee-line out the door, past many parents that were filing in to help set up the feast, up the very long staircase, down the excruciatingly long hall, and into the peace of my classroom, where FINALLY the tears were able to escape and course down my cheeks. All while the questions started to come, "Why God Why??? Why her?? When is this going to get easier? I CAN'T handle this". Then, the words to myself, "You're going to be OK, just breath, she's a survivor, you're a survivor, help her get through this". Then, they were gone. The tears dried up, and I was ready to go on.

When Em's aide tried to get her to sit out for the first part of the program she got VERY upset and cried and cried and cried. So, I talked to our music teacher and asked her to have Emma join the entire program. I said that her aide could pull her out if she needed to. She agreed and said that she had only made the suggestion to have her do only the last song because she thought it would be what I wanted. SO, it all worked out.

The emotions that I felt when I saw my big girl on that stage are ones that I cannot describe. SHE.IS.ALIVE!! Thank God for that! The odds have been against her time and time again...and she is a survivor. No one can take that away from her. She may do things in her own way, but her way is BEAUTIFUL! The joy that shown on her face today, the day that she got to join her peers on HER stage, it was undescribable!

Here is a picture of my princess. It doesn't do justice to the event, but picture in your mind the mom sitting in the audience that was running the video camera and simultaneously taking pictures...(now THAT'S what I call talent) with thoughts running through her head about what could have been...and instead what IS today!

getting ready for the program


My little star


I AM SO THANKFUL FOR TODAY!

Not the "P" word!!!

We took another trip to the doctor today. Owen had a fever of 103.8 that wouldn't break with Motrin or Tylenol or 24 hours of antibiotics. That's when I heard that nasy P word...PNEUMONIA! I won't even tell you all of the directions that my mind has wandered. I am quite certain that it has replayed the episode where Em had "pneumonia episodes" for an entire year...only to end up in ICU as I walked into her room to see her oxygen monitor drop to a lovely 32!!! Yes, the rational part of me says that this is Owen not Emma, and it's not going to go there. After all...she was aspirating...he is not, right? He's not, right? UGH!! My mind needs to go to sleep. I think that my mind cannot think very clearly because of lack of sleep.

So, to help my mind to feel better (that's what a momma has to do, right) I have decided to attempt to eat my body weight in carbs. Yes, last nights snack consisted of 3 Pizza Hut Breadsticks (MMMM...that was my #1 craving when I was pregnant with Owen), a big plate of pasta with butter and cheese and a Coke. Tonight, I am having some rice, some nachos, and a Coke. Yup, I am feeling much much better!

Stranger Danger, Getting Old and SICK!

Phew! Such a list of topics for one day! Let's just say that it was an adventurous day (and last night) at our house.

Last night we were able to go to a movie....without our children! Grandma came over, and it seemed like it was going to be the perfect outing...until the realization came to me that Owen has not been watched by anyone (other than his daycare) since he was a month old...and even then it was only for about an hour. Grandma came over early and ate dinner with us, she held Owen, all seemed OK in the world...until we started putting on our coats, grabbing car keys, etc. THEN, Owen turned on the waterworks and managed to take my heart and practically pull it right out of my body. Grandma was holding him, but his eyes were following me all around the room while he cried, cried, coughed coughed, cried, cried..well, you get the point. I thought, OK this is a "good" think...stranger danger is a typical milestone that kids are supposed to meet, right? SO, guess what...he was just playing me!!! Grandma made a bottle right after we left, and he was just fine. I think he was simply worried that the chow wagon was leaving, and how in the heck was he going to get fed?

Today I woke up to my 2 little seals barking nicely in chorus. Yes, both of my children have been barking like seals for the past 3 weeks. I have not taken either in because they both have been eating, drinking, no fevers, and just acting like their cute little adorable selves. Here's the funny part....I am what is called a "medical mom". Not a title that I ever wanted, but it was so kindly bestowed upon me when Emma was born. I know the signs to look for on her for low oxygen, signs of allergy, signs of rejection, the good the bad and the ugly of jaundice, what "failure to thrive" means, any blood tests that have to do with the liver or anything surrounding it:), etc. etc.

Here's the funny....when it comes to Owen...I. AM. CLUELESS!!! How do you know when a "healthy" kid is "sick"? Well, last night he had a fever of 100.2, and the cough sounds "different". So, I took him in. Woohoo! I played the right card and knew when to take him in...he has a sinus infection. The poor little guy is feeling like crap! It is very difficult to redirect my mind from the "medical mom" world to the "mom of a healthy kid" world. I just fight so hard to not overreact.

Anyway, that made me feel a little better as far as the stranger danger from the night before when I left him with Grandma too. I think that a part of his whininess was his not feeling well.

Now, for the not so funny part of the day (Has the rest of my day been funny? Not really, but this is REALLY NOT FUNNY!!). I went to Wal-mart to get Owen's RX filled, and while I'm walking around the store an older gentleman came up to me and said, "What's this that you have? Is it a boy or a girl?". I said, "He's a boy". He said, "Is he yours?". I said, "Yes". He asked me, "How old were you when you had him? (At this point I'm thinking this man is being very kind and thinking that I'm too young to have children). I said, "I was 35 when I had him". He said, "Do you know how old you will be when you're done with him?.....(PAUSE) You'll be OLD! You will be like 57 years old!". I simply turned to him and said, "Even then you are not DONE....you are never done parenting. Once a parent always a parent"....and I walked away.

So, the rest of the day has been a little blah. I've been feeling like an old mom with 2 barking seals for children. OOOHHHH...I think I hear Calgon calling my name!

My 5 year old teenager...OY!

Where did my sweet little baby girl go? Ok, she is still very very sweet, but lately I find myself in awe of all of the things that she is saying. Maybe I am just finding myself in awe that she is talking at all....which is AMAZING!! She is so sassy, and I don't help things when I chuckle when she says something that is sassy. She is also very particular about exactly how things need to be done.

When we got in the car this morning she said, "Chewing gum please mommy". I said, "You think you NEED chewing gum". "YES!" she replies with exclamation. So, I gave her some gum. Immediately she tells me, "I NEED Hannah Montana". I said, "You NEED Hannah Montana?". She said, "Yeah" (and gave me the UH...HELLO MOM...where have you been), and...because I paused for a moment, she added her own words for me. She said, "OK...FINE...Emma!". Where does she get this stuff? It's just so darned cute though. I can't help but laugh.

Oh, another thing. She had a REALLY rough night of coughing and barking like a small seal that is being harpooned. She was up from 11-3! Yikes, good thing that I didn't have to work today:). So, when she woke up at 6!!! Yes, 6!!! No sleeping in for this little girl! I asked her, "Does your throat hurt today?". She paused, shook her head, and said, "NNNOOOOPPPEEE!". I wish that I could explain it the way that she says it. It is hilarious. Then, I asked if she was tired and she said, "NO WAY JOSE!!". HA!!

She's growing up so fast, and she is just so funny right now! I love listening to her. The other day she was on my cell phone! (just playing... HMMMM??? She probably shouldn't play with that (note to self)). I asked her a question, and she said, "Be quiet mommy! I'm on the phone!". It's so funny to hear things that I have probably said to her...repeated back to me. It makes me think...maybe I should ask in a nicer way??

If she's only 5 and acting like this...will she "be" the same age as me soon??? CRAZY thought:).

*Notice the new music on the blog?? The song "Unwritten" by Natasha Bedingfield has always made me think of Miss Em...she is Unwritten....but the pens in her hand...she will write the rest for us...in HER time:). I also had to add a little Hannah Montana for my mini diva...I actually LOVE this song, and it makes me think of her too...the last is a song I just love that has helped me through some rough times. Enjoy!

Overreacting???

I have a tendency to overreact when it comes to my children. Yes, I am one of "those" moms that I never thought I would be, but mess with my kids.....and the mama bear in me comes right out of my cave ready to attack. So, here is the situation that took place today, and I need some help deciphering through it to see if I am overreacting.

A little background:

Sometimes I just want to be able to be a normal parent. I have been very proud that Emma has been potty trained (for the most part...excluding nights) since she was 3 years old. Well, anytime that she gets sick, she gets massive diarrea that comes so quickly that she doesn't have time to tell you.

Emma's special ed teacher at school is one of my very best friends. She was in Denver with us through all of Emma's transplant and 2 other surgeries.

So, here's the deal:
Today, Emma sped. teacher was gone. It was a 1/2 day, so after Emma got out of school she went to daycare (where her sped. teacher happened to be working today...it is owned by her daughter). Right before Em got on the bus she had a little accident, so I put a pull up on her just to be on the safe side.

I went to pick Emma up and her sped teacher had all of the 3 and 4 year olds...and emma in a circle singing a song. She stops and says, "Oh, we need to stop...Emma's mom is here". Then, she turns to me and says, "She had a REALLY poopy diaper...I keep telling her that she needs to do this when her mom's around".

Here's my reaction:
I didn't do a thing at the time...I might have been a little more standoffish, but didn't say anything about it. However, my heart is breaking. I realize that Emma has special needs. I realize that she doesn't care that that was said about her in front of her peers. However, I CARE! I would never tell one of my student's parents something like that in front of all of the other kids. Granted, my other students are typical kids and they would be mortified if their peers knew that they had had an accident, but still.....I'm just not OK with that news being announced in front of everyone.

It seriously made me go from having a really great day to just feeling like shit!! How can something like that make me feel so small and insignificant?

Am I overreacting? Please tell me the truth. If I just need to buck up and put on my big girl panties just let me know:).

Bloggers please share

I'm interested to know....everyone has a story. Life is a big story with many many chapters. Tell me about the most difficult part of your story.

For me, it's been acceptance. I was talking to a fellow mom (2 completely typical kids) recently, and she was asking about Em's journey. I've only known her for a short time. While I was telling her all of the medical mumbo jumbo it hit me....that was definitely not the most difficult part of the journey for me. All of our medical stuff happened so fast and furiously. I mean Em had 7 surgeries in the first 7 months of her life including a liver transplant. Through it all I remember praying to God, "Please let her be normal if she survives this". 5 years later it still makes my heart shatter thinking of those very dark days. We made it through transplant...it was pretty rocky but we made it. Did we make it to normal??? No, no we did not. Really, when I finally allowed myself to realize that we weren't going to find "normal"... that is when I hit rock bottom....and it has taken me a long long time to dig out of that hole. I think some days only my eyes are sticking out of the hole...taking a brief peak. I know that we are going to make it in this world. It's very different than I had ever imagines, but life is good.

Icky Icky Icky

The ICK has hit our house! Emma's been home from school since Tuesday with an "explosive backside" (I'll let you figure it out without more explicit details). Well, yesterday afternoon it had stopped, so I thought for sure today she would be able to return to school. Then, the clock struck 12:45 am.....and the puking began! There's nothing quite like waking up to that sound...knowing that your child is in their bedroom and there is NO WAY that they made it to the toilet. As you walk into their room you await the sight...anticipating the extent of the damage.

The ironic thing about this is it used to be a nightly ordeal in our house (if not 2-3 times). Emma used to have horrible reflux, and she would vomit 3-4 times a day and at least one time during the night. I was a pro at sleep walking down the stairs to throw her bedding into the washing machine and remaking her little bed so she could go back to sleep. It's amazing how far she has come in that area. You'd think it would be like riding a bike for me. You'd think that I could just go in there and clean it up while half asleep and return to bed. WRONG!! Why? You ask....well, this was ACTUAL VOMIT!!! AND, Emma got out of her bed to try to come and get me, so the puke was EVERYWHERE!! Back in the "good old days" (that is humor at its best), it would just be in her bed and it truly was just undigested milk (her digestive system was very slow), so it had very little odor so it was fairly simple to clean.

I look forward to this icky bug passing through our house. I really hope that the rest of us do not get it. I also hope that tonight is a peaceful night of sleep.

We're off to see the Wizard

Happy Late Halloween to all! Yes, I am a little late....and my last post (Owen's 6 month birthday) was a little late too, but hey...better late than never, right? So, we had a GREAT time trick or treating...then, we went to a Halloween carnival. Emma was so sugared up by the end of the night..whew!!

Here are some pictures of our Dorothy and Toto! Enjoy!

Happy 6 month Birthday Big Boy!!!

Dear Owen,
I cannot believe that 6 months have passed since I first saw your beautiful face. The moment I heard your cry I felt the fierce protectiveness that I have only experienced one other time in my life.

I have enjoyed the past 6 months so much. You have the most sweet spirit. When you smile your entire face lights up. You have so much to tell the world around you, and you really enjoy being around others. You think your sister is the funniest person on the planet, and you watch every move that she makes (with the intent on copying her very soon I am sure).

I love you more today even than I did yesterday....and I will love you even more tomorrow. I am the luckiest Mama in the world to be able to call you and your sister my children.

Love,
Mama

In My Daughter's Eyes

We found out about a month ago that Emma needs glasses. As silly as it seems...it has been difficult for me to accept. It's one more thing that is "different", a permanent change in the beautiful face that melts my heart every time that I look at it. The fact that it took so long for them to get the frames in (they had to order them for her tiny, pixy little face), didn't break my heart. I was OK with waiting more days, so I could see that face...that part of me that I helped to create for just a little longer without anything disrupting my view.

However, yesterday was the BIG day. Emma was so excited, and by that point I was too. I was excited to see how she would SEE the world. Her eyes were so bad that everything was a blur. I knew the glasses were going to open up a whole new world for my little girl. I had no idea.....

As my sweet pea climbed into the chair the song..."In My Daughter's Eyes" by Martina McBride (it is playing now) began to play. What a euphoric feeling it was...another leg to our journey. She truly is my hero. All that she has been through...and she has been guiding me this entire time. It's uncharted territory for me, but she takes it like a pro and takes me with her. When the glasses were placed on her face she started walking around the room saying, "WOW!! MOMMY!!!". The staff had a good giggle while I held back the tears. The happy tears of hope. Hope that this new world that has opened up for my hero will bring even more progress to her quickly progressing skills...even more joy to her everyday joyous world.

She's had the glasses for a day, and when I looked at her while she was sleeping tonight I knew that something was missing. Already her glasses are a part of her. They are the part that help her to see how wondrous the world is. The world that is endless for her.

So Proud of Myself:)

Take a look at my new blog design...what do you think? Pretty impressive, huh? I am LOVING it!!! Hopefully tomorrow will bring a full update on Miss Em's newest addition to her face:). I'll leave you with that thought right now. Oh, and she's telling everyone how she is "SO CUTE". I'd personally have to agree!

Ditching being a mom

I had a meeting this afternoon, so I had to be away from school. This is the first time that Emma has been with a substitute teacher. I'm hoping that she did well. It's our music teacher who is subbing for me...so, she does know all of my kids. Well, my meeting got done really early, and Emma knew that she was going to daycare after school. She LOVES going to daycare because #1 she gets to ride the bus all the way to town and #2 she gets to see her BFF Brindi (Brindi is only 4 and will be coming to our school next year). So, naturally when my meeting was dismissed early I knew that I couldn't go to pick her up too early. I decided to come home and spend some much needed...never found quality me time. I have ONE blissful hour for just me! AHHHHH!!! Why is it that I'm feeling a touch guilty about it?? Granted, it makes sense why I'm not picking Emma up, but I'm feeling a bit guilty about Owen. Here's my reasoning there....this is his naptime. Naptime is very much needed at the almost age of 6 months (can you believe that he's that old already?).

So, I'm off to enjoy my blissful hour....although now it is only about 50 minutes. AHHHH, I'm hearing bubbles from the bathtub calling my name!

How Do You Cope??

That is my question to you...as the readers of this blog (I'm not sure how many read this, but please please please post if you do). We all have challenges in life, so everyone has coping mechanisms, right? What is yours?

My main one is finding the little things. Like today, I had Emma "help" me make cookies. We made sugar cookies (with no egg....egg allergy kiddo) and fully decorated them with true milk of magnesia pink icing...ooohh laaa laaa! I decorated them after she went to bed. She will be so excited to see them in the morning. What a great way to start my week...seeing the look on her face.

When Em started school I began putting a note to her on her napkin every day. Every time that I did it I wondered who would read it to her (I'm not usually in the lunchroom)...would anyone? I wondered if I should continue to do it. After all, she can't read it. Then, I decided YES I am going to continue. I am going to continue to know in my heart that someone is reading it to her and it is brightening her day, and guess what....a little part of it is just for me. Because, if my child were a "typical" kiddo...this is what I would do every day. I need to do it for me...and for Emma too.

My little thing every night is to take a bath and read. It is my one luxury that I look forward to once both my kids are in bed, the dishes are done, lunches are made, and we are ready to hit the ground running the next day.

What is your coping mechanism?

The differences

I hope that both of my children read this one day. I hope that they know that the differences between their first years of life are like apples and oranges....like night and day. I hope they know that there is absolutely no way to compare the two experiences. Yet, I also hope they know that I wouldn't change either experience...or the order in which they happened. I love both of them with all of my heart and soul....and I truly hope that they always know that.

The first year with Emma was like a whirlwind. I was thrown into headfirst....and I had to wait until it stopped spinning to be able to balance again and see what was ahead. We had many people helping us through the first year, and I will never be able to thank those people enough. We were told many times by the doctors that they were not sure she was going to live, yet she did...and everytime she made me so much stronger. Before Emma I never knew how strong I could be. I also never knew I would be so knowledgeable! I have learned more than I ever wanted to know about the liver, allergies, how speech develops, and how children learn to crawl, walk, etc. Also, I know so much about the progression of eating. Yes, each stage has taken Emma a bit longer to progress through, but I have learned so much during each stage. I am constantly amazed...not only by Emma....but also by myself and how much I have grown by learning from her. That first year was incredible, and now that I can look back and see the outcome, I am SO glad that I was chosen to be Emma's mom and travel the journey with her. She has been my teacher, and I've been a pretty good student I must say.

The first year with Owen so far (we're only 1/2 way there) has been peaceful. He has taught me how to breath again, and he has helped me to find a part of me that was hiding. My husband used to call me "a leaf" because I would just float through life and go with the flow. Owen has helped me to find part of that person again. He is a very calm baby, and he helps me to be calm too. He has given me the gift of experiencing life as a mother to a typical child...which most people know nothing else. Owen has helped me to realize that most babies learn to do things on their own, without the aid of therapists and interventions. I have connected with other mothers of children the same age, and I have enjoyed it. He has helped to balance me. The uptight mother has been balanced with the laid back mother to create a once again very happy person.

Both of my children have made me who I am today. I would not change a thing about either one of them because that would change who I am, and today....I'm pretty happy with who I am.

What to do with a snow day?

I was just about to download my photos when I noticed this....

this is what I dressed Owen in last weekend as we were doing yardwork


and this is what he was dressed in yesterday!


AHHHH! Just one of the joys of living in Wyoming. The only thing you can predict about the weather is that it WILL be unpredictable.

We decided to make good use of a snowy Saturday. I watched out the window all night as the beautiful flakes fell to the ground, and I had visions of the enormous snowman that Emma and I would make. So, yesterday morning, I got us both dressed in our snow gear and out the door we went. We began to pack the first snowball, and I realized it was not the packable kind of snow. So, I went and got a bucket of water, and together Emma and I made the most of it and made a pretty good...although small and rather odd shaped...snowman:).




Emma, of course, is highly concerned about the snowman having to sleep outside. Oh, how will I deal with the tears that will surely fall after Mr. Snowman melts. We'll cross that bridge when we get there.

Next, every Wyoming girl needs to learn how to eat a "Wyoming popsicle"

Mmmmm...mmmmm...Good!

Then, we headed to the backyard to play on the swingset. Emma was in awe of what she saw



But, we brushed them off, and broke off the icicles, and she had a great time anyway!


To finish off the outside play time, we journeyed to the slide, and what did we find??

Em thought it was a BLAST to slide down into the snow:).

One last shot before we headed inside.


Owen came inside during most of the fun...to hang out with Dad


We had so much fun! We came in the house and had hot chocolate and marshmellows (yum), then we ventured back outside to scoop up some of that clean white stuff to make some YUMMY snow ice cream!

Emma really wants it to snow every day. I, however like it on occassion. We truly do enjoy it when it comes.

Don't Say That!!!

Funny little story here....I was in the shower with Emma the other day. She has a water bottle that she likes to play with after she is all clean. I let her sit on the floor of the shower and I fill the bottle with cold water. She thinks it is just HILARIOUS to spray the cold water on my feet. So, as a little speech therapy, I always make her ask, "More water please Mommy". Well, she has been able to say that for awhile. SO, the other day I decided to have her say, "I want more water please mommy". She did it.....AWESOME!! (that's a 6 word sentence....can I hear a YA HOOOOO!!). So, she said it once, I gave her cold water, and she sprayed it all over my feet while laughing hysterically! Then, she handed me the water bottle and said, "More water please mommy". I said, "no, say I want more water please mommy". She looked at me, rolled her eyes and said, "DON'T SAY THAT MOMMY". I had to laugh and aplaud her for her talking! Even though it was sassy...it was GREAT! You go little girl! Momma loves to hear you talk:).

Making progress

Since my last post I have made some progress. For me and my emotional outlook...it is always two steps forward and one step back. However, I figure as long as it is still 2 steps forward I am making progress, right? I'm not sure that I will ever be 100% OK with the fact that Emma's not "normal"(I'm more than OK with Emma....just not the circumstances), and I guess that is OK. It's difficult when you dream about your child your entire life, you get pregnant and the whole 9 months you plan their future, and in the blink of an eye everything that you had planned changes. It's not necessarily bad that it changes. It's just difficult to wrap your mind around your entire future looking different than you had ever dreamed.

It's almost like I have 2 personalities these days.

There's the one personality who obviously loves Emma no matter what (actually BOTH personalities feel that way), but this personality is just the go with the flow type of gal who can take whatever comes and make the very best of it. Yes, this personality knows that I'm going to be OK no matter what. I can take it, and I'm going to be strong through it all.

THEN, there is personality number two that doesn't know how I'm EVER going to do this. This personality is angry and bitter. This personality wants to spit in the face of anyone that has never had to deal with accepting that their child will never be "normal"...those who look down their nose at me because their lives are "normal".

Yesterday a mom of one of my students was talking to me (she has 3 children...all of them "typical). She said to me, "I think God choses those who can handle having a child with special needs". While I do believe a part of this is true.....What is the deciding factor on this? What did I ever do to make me "worthy" and not this mother that said this to me?

Yes, I am proud of my Emma. She is my world. She makes everyone smile and realize that life IS good. It's just that a little tiny piece of my heart aches when the children in her class ask why she doesn't talk like they do...or she pushes someone (because she's trying to get their attention) and the other child sees it as Emma being mean. It's times like that that I have to ask WHY??

It's like I told this mom...."I truly believe that every parent should have to experience having a special needs child for a few years and then it is someone elses turn". They do teach you so so much that I think everyone should be given the same opportunities. At the same time I think that all parents of children with special needs should have the experience of living a "normal" life with their children.

Ahhhh, what changes there would be if I was in charge of the world.

Today...Breath...Get through Today

Why is it that some days are like this? Today I saw a little girl doing cartwheels while her mom was trying to get her into the car. I saw her and all I could think was, "That's supposed to be my little girl....why why why???". Just when you think that you won't ever ask "why?" again. Just when you think you are comfortable with life and where your child is....it hits you like a ton of bricks. Damn it!!! It's just not fair! Yes, I am so very thankful that she is alive! I am so thankful that she is who she is and that she shines sunshine into very dark places, but sometimes I just have to ask WHY!!!

I listen to the children in my class talk about Emma. They are so sweet saying, "Emma is just very little" or "she is young". While I am so happy that the others are so accepting...I just wish....oh how I wish!!

Yes, I am having my own pity party! I am....I am entitled. It won't last forever...but, it is what it is.

Here's a little picture of my 2 to brighten this post:). Enjoy!

Where does the time go??

I honestly can't believe that September is here...and our weather feels like Christmas is just around the corner. I wouldn't be surprised at all if I woke up to snow in the morning?? CRAZY!

Well, here are some pictures of a few things that have happened in our household lately....

We had Owen baptized in August. We have many pictures, but this is BY FAR my favorite:)


Then, Emma started Kindergarten! I can't believe it, but my baby girl is in big kid school! She absolutely LOVES it. They are long days for her, but she is doing GREAT! She says her favorite thing so far is the FREEZE song:). It's so fun to be able to watch her interact with the other kids. She is a peanut with a giant personality:).


Then, here is a picture of Big Boy Owen. He is growing so fast. It is fun to watch him:). He is now almost 14 lbs. He is rolling both ways, and can he ever carry on a conversation with himself:). He is loving daycare:).


Enjoying fall...wouldn't mind a little more summer, but we'll take what we can get:).