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:).

Today You're 5

Today is the day....my big girl (who is 33 lbs. and 37 1/2 inches tall) is 5 years old! Honesty is what I'm going to write today. I looked back at my blog this morning to see what Emma was doing at this time last year, and I think that I have always been very vague about Em's accomplishments (as a protection for myself). Now, I really wish that I had written about it because I KNOW that she has made leaps and bounds in the past year. SO, here goes.....Emma says so many words now. She will repeat any word that you give her (it may or may not sound the same). She puts together many 2 and 3 word phrases. "I go", "all done", I U Mommy" (ie...I love you mommy...makes a momma's heart proud), "no way", and many many many more. She can count to 10...although she ALWAYS leaves out 7. She loves the numbers 8, 9, and 10. We are working on identifying colors....but we're not there yet. She can match anything....the girl LOVES to match. She loves to play with Barbies and Hannah Montana:(! In the past year she had learned how to jump off of things and she's learned how to ride a tricycle (although she still doesn't LIKE to ride her tricycle). She can eat anything (except her allergens) and drink straight liquids (without thickener) without getting sick. Em loves to sing, and will try to sing every song that she hears.

Overall, Emma's come a long long ways. We still have a long way to go, but we are enjoying each new milestone that she makes. Life is good.

The Big 5!!!

Dear Little Missy Moo Emma Loo,
I cannot believe that tomorrow it will be 5 years since I first saw your beautiful face. I remember the first time that I saw your long black hair and heard your sweet little cry. I knew at that moment that you were mine and I would do everything in my power to always protect you. You were my sweet precious baby, and I loved you more than life.

That first year was tough. I saw you fight for your life so many times. You hung on and successfully made it over every hurdle with ease. You amazed all of us including the medical professionals. I saw you in pain so many times, and I cried for you wishing that I could take your place and make the bad times go away. We saw you transform from the very fragile caterpillar to an amazing strong butterfly. You found your wings, and you flew! Everywhere that you would go people would comment on your beauty. You knew how to work a room. Your personality just shone, and there was rarely a moment when you were not smiling.

Today, I look at you and I am in awe. Life is still challenging in so many ways, however you never let it get you down. You are the strongest person that I know. Your beauty and personality have become even larger than I ever imagined they could be. I look at you when you are telling me, "NO MOMMY!" and while it makes me frustrated that you don't want to listen to me....I always take a step back and appreciate the spunky little spitfire girl that you have become. You are my baby that they said would never walk....as you run from me laughing. You are my baby that they said would never talk, as you sing the song, "ONE DAY!" over and over and over and over.

Sing away sweet songbird. Your voice is the sweetest most wonderful sound that I have ever heard. Your mission in life is unknown, but you have already accomplished so much. Everyday I thank God that you have made it through all that you have. You are my angel sent from Heaven above to teach me and so many others about love and patience. Thank you for choosing me to be your Momma! I am one lucky lady.

Love,
Mommy

The Mind is a Scary Place

At times I worry that my mind cannot quite comprehend everything that happens in my world. I think that part of my mind is just my "tune out zone". When things get too complicated I just go to that place....and it makes me happy again. I find myself needing to do this a lot lately. There are so many big changes that are coming....and they are coming SOON! First, Emma will be 5...can you believe it??? 5 YEARS OLD!!! Where did all of the time go?? Second, Emma will be starting KINDERGARTEN! Yikes!! AND she will be IN MY CLASS. While an enormous part of me is so excited about this, and we did push for this to happen....a small part of me is scared out of my mind. Does that make me a bad parent?? Just the thought of it is making my mind go to its "happy place".

I know that Emma will be fine. It's me that I worry about. Not me as the teacher....she will be fine also. It's me as the Momma...who's heart literally gets ripped right out of my chest anytime that I see kids being mean to my little girl. Kids can be brutal! I know that I was probably brutal to kids who were different (meaning had special needs) when I was a kid, but I really wish that if I was mean I could turn back time and make it "all better" (Emma's favorite saying right now). I think that it will be difficult to try to explain to other students in my class why Emma is "different". I think it will be very difficult to seperate the teacher from the Momma in those situations. BUT, they will come and we will get through it. My mind will just go to the "happy place".

I find that since Emma was born I am much more outspoken than I ever was before. I have always been a fun and outgoing person. Now, I find that I am still me...with just a little more fire when it comes to certain subjects. Here is an example.....I frequent (many times daily) a website that has families of children with liver disease. I LOVE the people on the website and have made some wonderful friends who are on similar journeys. I have always felt that I am a big part of that website because Emma is the same as those children. I know that Emma has other issues, but I allow my mind to go to the "happy place", and I can make myself believe sometimes that liver disease is all that we are facing. However, TODAY one particular post hit me right in the heart! It made me feel like I had been knocked down on the floor and I was gasping for air. Really, it was a simple word that the mother wrote. Her child had just had a liver transplant yesterday and she was angry at a nurse. However, the one little word that she wrote made me lose a little respect for this mother, and it made me feel like she is one of the priviledged ones in the world.....a mother who does not have a child who is of lower intelligence. The mother wrote , "Does the nurse think I am a retard???". Yes, her child just had a transplant....I know that the mother is not "lucky". I know that she is hurting inside, and it was just a flippant comment. Before I had Emma the comment would have struck me as a little odd, but it would not have had the impact that it had on me today. It took everything in my not to PM her and tell her that it was inappropriate. But, #1 her child is very sick, and it would be very bad timing on my part. AND, #2 I know that it wasn't intended to be mean......my heart is just fragile.

So, today my mind will just go to my "happy place". Today I will count my blessings that my baby girl is almost 5 and will be going with me to kindergarten. Today I will be a happy momma who loves my girl no matter what.

4 days later....a prince is born

4 days after my last post....our prince decided it was time to make his entrance into the world. What an amazing entrance it was!! He decided to be born on one of my very best friend's birthdays.....April 28th....Happy Birthday Becky...AND Owen Edward James __________. He was 4 weeks early but healthy as can be:). He tipped the scales at 6 lbs. 14 oz. and 20 inches long. He really is amazing! Eating, sleeping, pooping, peeing (everywhere:)...boys are so much fun:)). What more can we ask for?? Here are a few pictures of the Prince...and one with the Princess. She's still not sure what to think of him! When he cries she yells at him, "STOP...no crying!!!" (Like that's going to make him stop??). She does love to hold him and kiss him too.
Owen's 1st picture....he's pretty relaxed:):







Here is Emma thinking, "If I just keep this plug in....he won't cry"

Falling into place....???....

I am going to knock on wood before I even type this post, but things really do seem to be falling into place. I am back to work, and feeling pretty darn good I have to say. I have 19 days to go until my scheduled c-section date, however my OB doesn't seem to think I will make it that long...and at this point I am OK with that. The ultrasound on Monday showed that my baby boy weighs a whopping 7 lbs. 3 oz. (YEAH C-section!). I feel an overwhelming sense of peace about his health, and I think that is a very good sign.

The planets also seem to be properly aligned at this moment. The BIG news since the last time I posted....EMMA GETS TO COME TO MY SCHOOL! Yes, I will have the ultimate priviledge of being her teacher next year. I can't even begin to explain what a huge weight that was off of my shoulders. I am so excited to see her get on the bus the first day with her brand new lunch box (Lord only knows what she will want to pack in it) and her pretty little dress. She is such a big girl, and I am just blessed to be able to be her first teacher in the public school setting.

We also had Emma's transition meeting last night (2 1/2 HOURS!!!)(Transitioning from pre-school to public school). I was extremely nervous about this meeting as her pre-school therapists go through all of her strengths, weaknesses, and.......show us the testing that shows where she is "developmentally". I have asked to not see any of the "scores" for these tests since Emma was 18 months. Seeing the scores back then did NOTHING for me! It just sent me into a crazy funk, and made me feel disconnected with my child....not very promising for either of us. I knew going into this meeting that I would be shown those scores, and I had prepared myself. However, when they got to that part of the meeting (and that part of the 3" thick packet of paperwork) there was a page that was folded in half. It was her scores!! They "had" to give them to me, but I am so glad that I didn't "have" to see them. No, I am not an ostrich with my head in the sand. I KNOW that Emma is developmentally behind her peers in ALL areas, BUT she is EXACTLY where she is supposed to be! That is truly all that I care about. Tell me what goals she has met (for her), and tell me where we need to go from here. End of story. The meeting went well, and I left with a positive feeling that next year Miss Emma is going to shine!!

Also, last week I found daycare for baby boy:). That was a HUGE relief!!! We live in a town of about 8,000. We don't have many daycares, and it seems that EVERYONE that works for the school district that is in the childbearing years is pregnant! Each daycare can only take 2 infants, so when I heard that the daycare that was #1 on my list had an infant opening I literally sprinted to the phone....which was not at all pretty by the way! I know the owner and I have since high school. I am just very excited!

So, that's our lives in a nutshell! Things are feeling pretty good, and I am so glad to know that the planets have finally figured it out and found that perfect alignment:).

This Life

Here I sit at 2:30 am full of frustration and confusion. Maybe it's because it's the middle of the night and I'm just not thinking clearly, but I felt like I needed to write some thoughts down so I can eventually look back and see how far I've come. That's what this blog is all about, right?

I sometimes sit back and I can't believe this is my life. Five years ago I sat on this same couch (probably in the middle of the night), pregnant, and I would never have dreamed that our path would have gone this way. I will just say it.....I never WANTED to be a mom of a child with special needs. Who would? I never WANTED to have a child with a complex medical history. Who would? Yet, here I sit 5 years later up to my neck in it....and what the hell am I supposed to do about it? Don't get me wrong I love her with all of my heart. I just hate the way that I still feel about being a mom with a child with special needs and a complex medical history. AND, I hate the fact that I will never know WHY! It hurts my heart like no one will ever understand to not know what the future holds for her. It makes me so very angry that we have to fight for every single thing for her, and it frustrates me that she will never be looked at as "normal".

My heart is so heavy tonight. I am so worried all the time that something will be wrong with this baby. I am in constant turmoil over it. What did I do wrong the first time I was pregnant? What if I have done it again? I pray that God knows that I am not strong enough to do this again. I NEED to experience normal. PLEASE let me experience normal. I hate the fact that we went to the neonatologist and got the perfect picture of the baby's foot (on ultrasound) and Tim and I both immediately jump into panic mode thinking that his foot looks exactly like Emma's. We then have the doctor going in search of the baby's thumbs....we need a picture of those thumbs to SEE that they are not the same as Emma's. It just makes my heart shatter! How can I NOT want this baby to be like Emma? As I layed there asking the doctor to look for different things on the ultrasound, I looked over at my sweet girl sitting on her Daddy's lap, and it just made me sad! How can I love someone SO much, yet be petrified at the thought of having another one like her?

As the time for the baby to be born gets closer, I can feel my anxiety getting worse. When I think about it, it feels like my chest is collapsing and I can no longer breath. I so badly want to see him, but I also don't want everyone checking him out head to toe to see if he has the same "dysmorphic features" (doctor's words:(....damn them) as his sister's. I want to just love and appreciate every aspect of both of my children, but tonight I just feel like a bad mom.

Happy 4th Liver Birthday Miss Em

Dear Emma,
I never imagined 4 years ago today that life with you could be this amazing. You have definitely been the rainbow at the end of the rain. Your colors shine through to all who meet you. You have such an amazing capability to make everyone smile. Even the person who is angry at the world and can see nothing good....cannot help but smile at you.

I believe that you know that you have this special gift, and you carry it with you like a treasure. You know exactly when to bring it out (when your being sent to your room for being naughty, and you just have to give Mom a hug first). Your world is amazing, and it is such a blessing to see you continually learn about your surroundings.

4 years ago today we placed you in the arms of a nurse to take you off to an 8 hour surgery. What should have been the most terrifying moment of my life...was actually one of the most peaceful. I knew that you had to have that surgery for you to live. Time was not on our side, and I had watched you slowly deteriorate for 7 months. I knew that you were struggling, and I was so thankful that you were finally receiving your gift.

Your Angel Claire has watched over you constantly. I have thought about and prayed for her family every day for the past 4 years. In their time of great sorrow, they chose to help 17 others. I'm so glad that one of those was you.

You never take a day for granted Emma. You live every day to its fullest, and you are rarely sad or angry. I cannot imagine if our journey had taken a different path, and I could not look at your smiling face today. I feel like the luckiest mommy in the whole world.

Continue your magic Emma! You are such an inspiration to so many.

Love,
Mama

1 more day....1 Angel always remembered

Claire would have been 21 years old. She was planning to become a nurse when her life came to an end on that beautiful mountain. Not a day goes by that I don't think of the devastation that her family has/ and continues to feel. Not a night goes by that I don't go into Emma's room after she is sleeping and thank "Angel Claire" for protecting our sweet girl. Emma gets her strength from Claire. I truly believe that. It has been said that the recipient of an organ often takes on some of the characteristics of the donor. Although I never knew Claire, I have read many comments from her friends and families that have been written on a website dedicated to her life. I know that she was a beautiful girl with a big heart. She loved life, and I know that she has passed that trait on to our Emma. Thank you Angel Claire for donating your liver to our little 7 month old girl who was desperately fighting for every breath she took. 4 years later and your liver is still a perfect fit for our fiesty girl. Bless you Angel Claire!

2 Parents

Yes, Emma's 2 parents have grown so much over the last 4 years. It was not too long ago that we were talking about how fortunate we are to have Emma in our lives. When she was first born....and for a long time after that, I think we both questioned WHY! What did we do in our lives to have God punish our child. That may sound odd....and we never felt like we were being punished, but why did God decide to give Emma so many struggles?? Just recently, we have both come to the understanding that Emma is SUCH a gift! (we have always known this...I cannot describe our recent thoughts). Other children who are "typical" are everywhere that you look, but when people look at Emma they see the love that she radiates. She loves everyone that she meets, and she would never want to hurt anyone. Truly, wouldn't it be a blessing if everyone in the world could look at every experience as an adventure....and love everyone they came into contact with. What a wonderful world it would be. As parents we have grown, and as a couple we have grown. It's been a very long journey, but it is one that we feel very fortunate to still be traveling. Today is one more day on the amazing journey with our precious girl.

3 Places that Emma loves to go

1) Grandma and Grandpa's house

2) To see her boys (our nephew's)

3) To get french fries at McDonald's

Not too hard to please the perfect princess:)!

4 Fun things

These are the top 4 things Emma loves today:

1) Her dogs

2) Dora the Explorer

3) Fruit snacks

4) Her Daddy....and sometimes her mommy too!

5 Fabulous things about our Future

Or, at least 5 fabulous things about the next year.

We look forward to:
1) Emma meeting her new baby brother!! What a day that will be:).

2) Emma starting kindergarten! I can't wait to see her at the BIG school:)....all 29 kids that we have there (grades K-5)

3) Emma's 4 year check up - It will be scheduled in July, and I'm sure it will be great!

4) Summer - All Emma can think about is planting flowers outside. I'm so excited to have her help me this year.

5) Seeing Cousin Kale again:). Emma loves her baby cousin, and she can't wait to see him again!

6 Significant people we've met along our journey

OK, I'm behind again! Somehow I am lacking my mojo??? You'd think just sitting on the couch all day would motivate me to write, but I seem to find other things to do.

Today, I am going to write about 6 of the people that we've met along this journey. These are 6 people that we would not have met otherwise, and they have made such a huge difference in who I am today. Some of them I only know through the Cyber world, but they are important to me nonetheless.

1) Becky, Joe, and Louis - We met the adorable Louis on an organ donor awareness walk. Although Becky calls me a stalker for tracking her down....I'm pretty sure that she's glad that I was so determined to meet them that day. Louis had received a heart transplant 3 months before Emma received her liver. Louis was also about 3 months older then Emma. Emma loved him from the start. Although we only knew Louis for a year before he left his Earthly body, he will ALWAYS hold a special place in our hearts. His parents Joe and Becky have become some of our best friend. Becky is the one person who I know will always listen to my woes and laugh about my funny mishaps. I truly feel like she is my sister that was misplaced at birth (hmmmm...not sure we could've had the same mom...but pretty sure they are at least sisters). My life has changed dramatically by having Becky in it.

2) Jill and Marek - Jill is my cyber friend who lives in Alaska. Our kids were transplanted within days of each other, and their birthdays are very close also. Marek and Emma have had many similar post transplant issues (especially allergies). I look forward to the day that I will one day meet Jill in person. When I talk to her on the phone it is as if I have known her all of my life. She has 3 boys, and she is expecting baby #4 in September:).

3) CRC staff - I can't limit this to just one person. CRC is the place that Emma goes to pre-school. All of her teachers and therapists (well MOST of them) have been phenomenol! They are so great with our sweet girl, and she has made amazing progress because of their loving care.

4) Annette - she is our transplant coordinator, and I don't know how we would have been able to travel this journey without her. She is the one who called to tell us that our life was about to forever change, and that our girl was going to have a 2nd chance. She answers all of our questions and never makes us feel incompetant. She is just amazing at what she does, and I am so thankful that she has been the coordinator that has been placed with us.

5) Debbie - I received a phone call last week from a fellow mom of a child that has Biliary Atresia and Rubenstein Taybi syndrome. It was an amazing conversation, and just a euphoric experience to know there is someone out there going through very similar challenges to what we have gone through for the past 4 years. Granted, this person has just come into my life, but I hope to talk to her many many more times.

6) Angie - Yes, I have met myself. When I look in the mirror today, I see that I am a drastically different person than I was the day before Emma was born. For the most part I have changed for the better. I am more understanding and compassionate toward others. I am definitely more educated. However, I am also more leary about what the future holds (before I never really thought about the future).....maybe that makes me a better person because I value every day that I have. However, sometimes I wish that I could get just a piece of that naitivity back.

******Above all else....I have met Miss Emma!!! Without her where would my world be? I love her with every piece of my being! I love absolutely everything about her. I would not change one part of our journey if it meant that I didn't have my baby girl to hold in my arms and kiss every night. She is my strength, my hero, my world!

7 Signs of Liver Disease

Only 7 more days (from yesterday...oops), and I thought I would post the 7 top signs of liver disease. Although we are post transplant, we still watch for these signs as they can be signs of rejection:

1) Light colored poo....I know that poo is just what everyone want to hear about, but that is the truth. Emma's was almost white pre-transplant.

2) Jaundice skin...this is the number one thing that people usually think of when they think of liver disease.

3) Hard, distended abdomen....as the liver becomes more ill, it tries to regenerate itself. It will literally add onto itself. If liver disease is progressing it will kill off that part also, but the liver will still try to regenerate. That makes for a very hard and big tummy. Once the liver gets to an advanced stage of cirrosis then it will start to shrink...never to regenerate again.

4) Lethargy...when any organ is not functioning correctly it makes your energy level become lower and lower.

5) Vomitting...as the liver gets larger it pushes on the other organs. It also makes processing food become more difficult which can lead to increased vomitting.

6) Elevated LFT's....The liver function tests in your bloodstream become elevated.

7) Itchiness and bruising - both signs of progressed liver disease.

Obviously, only one of these may or may not mean much, but when your child has ALL of these...it is a frightening road. Being post transplant causes increased anxiety anytime I see any of these signs. However, if I do see any, it helps me to know that I can get her blood drawn and know if it is liver related or not.

8 Easy (Easier??) things about this life

OK, I got a little behind in my posts....so, now I am going to play catch up! Now, back to our regularly scheduled postings.....

Our life post transplant has become so much easier. There are just so many things that I somewhat take for granted now....although I TRY not to. It's just the longer post transplant we become...the easier it is to put those memories of how difficult life was behind us. So, here are the top 8 things that I think have become so much easier compared to life before transplant:

1) Potty trained!!!- Before transplant Emma seriously had 10 -15 blowout diapers a day (I know TMI...sorry). Life is so much easier in that department:).

2) Medication- For one thing Emma LOVES her medicine, and she now reminds US about her medicine. She is also "only" on 6 medications vs. the 15 that she was on post transplant. Granted, I would LOVE for her to be on less...but...we'll take it!!

3) Oxygen - Post transplant, I had to carry Emma's oxygen around for the 7 months post transplant. I remember the day that she finally came off of it....a weight had been lifted from my shoulders in more than one way. We've had a few pneumonia scares where she has briefly been put back on it, but overall...she holds her own in the oxygen department.

4) Sleeping - This may sound bizarre, but pre-transplant Emma slept TOO much! I cherish the fact that she doesn't sleep much anymore. OK, getting up 4 times last night may have been a bit much, but I love the fact that she has so much more energy now.

5) Eating - Pre-transplant we literally had to force Emma to take her bottles. We calculated every single ounce and calorie that went into her mouth, and then we watch it all come right back out. She vomitted constantly. That along with the blow outs was SO difficult. We just watched her not gaining weight and getting smaller and smaller. Emma weighed 6# 10oz. at birth....she weighed 11 pounds on the day of her transplant, and her liver weighed 2 lbs!!! YIKES!! I look back now, and Emma has come so far in this department (mostly in the last year). She will try anything, and she loves to eat:). Mealtime is so much nicer in our house now. I don't have that fear about WHEN is she going to throw up???

6) Allergies - Emma's allergies post transplant became really bad. She is severely allergic to many foods, and moderately allergic to many others. Those allergies have not become any better, BUT in the last year we have found the right "cocktail" of medications to keep them at bay.

7) Personality - Emma is little Miss Personality....she always has been, but her personality is just shining through more and more every day.

8) Blood draws - Post transplant they tested Em's blood 2 times per day (this was immediately post tx...and she had a central line), then it went to once a day, then every other day, then once a week, then once every other week, then once a month, then every other month, and NOW she only has her blood drawn once every 3 months!! That is AWESOME!!!

However, blood draws are never "easy". I took her yesterday, and they had to poke her 4 times!!! Guess what! They still didn't get enough blood:(. It makes me so sad to see her poor little arms all bruised as the tears stream down her face...and mine! It's been a long time since I have cried at a blood draw. However, yesterday all Emma wanted to do was go to her BFF Brindi's house. We were on our way there, but I told her that we had one stop to make first....when we pulled up in front of the hospital, and I went to get her out of her car seat she said, "NO, Brindi's house". The whole time that they were trying to draw her blood she just kept saying "NO, Brindi's house" over and over again!! Afterward she received 10 stickers, 4 suckers, AND she got to go to Brindi's house! Anything you want baby girl!! You are my tough little princess!

9 more days...9 new worries

Life post transplant has truly been an amazing experience. I often look back at life pre-transplant and the time right after, and it seems as if it could've been someone else's life...and I was a mere observer. Then, reality brings me back to the present. Although life is SO much better than life before "the call", I would not say that our life is "normal" (although...truly "normal" is JUST a setting on the dryer). It is "normal" for us, and I would not trade it for the world. We were told before transplant that getting a transplant was like trading one disease for another. Although we got rid of the liver disease, we now have a child that is immunosuppressed and always will be. So, today I thought I would post the "top" 9 things that we have worried about since transplant. Granted, they are much less terrifying than life pre-transplant, but none the less they are worries for us as parents:

1) Immunsuppression - Emma takes a medication two times every day that suppresses her immune system so it does not recognize the "foreign body" that is her liver and attack it. Because of this we have to be more cautious that she is not around those who are sick.

2) Allergies - Since Emma was transplanted at such a young age and then put on the medication called Prograf (immunosuppresant) it has thrown off her allergy system. She has literally tested positive for allergies to every food that we have ever tested. Our allergist (who we love) has eliminated the major allergens (eggs, nuts, and shellfish) from her diet, however she has spells where she will get hives for days for unknown reasons or have vomitting spells. It boggles my mind sometimes! We are anxious to have her allergies tested again this summer because I think some have become more extreme.

3) Aspiration - Now, whether this is transplant related or not, it is something that we definitely worry about! Emma had always done fine with drinking....until one year post transplant. Her first year post transplant she did fantastic. Then, one year out she began having sinus infection after sinus infection...which turned into lung infections that led to hospitalizations. She would literally be on antibiotics for 10 days...be off for 2 and end up in the hospital again. This went on for a year. Finally, we went to Denver for her annual check up. I mentioned it to her doctors, and they were ready to just tell me it was OK. I was adament that something was not right. So, they did a swallow study, and sure enough Emma was aspirating on thin liquids. Since then we have had to thicken all of her drinks. It is a pain, but not all that difficult. We hope that one day she will be able to come off of the thickener.

4) Weakened bones - Emma has been on steroids for so long that it is questionable how strong her bones are. We have "only" had one broken bone so far (knocking HARD on wood right now).

5) Poop color - sorry TMI, however any "liver parent" knows that the poop tells you A LOT about how the liver is functioning. So, anytime that Emma has lighter colored poop....It FREAKS.ME.OUT!!! However, too much milk or too many bananas can also cause lighter poop (there's some food for thought:).

6) Blood draws - Even though we are down to getting blood drawn every 3 months....and they alway look excellent, I still get that high anxiety feeling until I get the results back from the blood draws. There is ALWAYS the chance of rejection. The further out we get the more confident I feel....but I don't think it will ever be a laid back event to get her blood drawn.

7) Teeth - Being extremely jaundice when the teeth are forming leads to....you guessed it....yellow teeth!!! Also, being on so many different medications and vomitting so much have not helped. Therefore we see a pediatric dentist. We will be seeing a new one this summer in Denver. I am frightened of that day.

8) Mom's sanity - LOL....I always wonder about that one:)

9) The thought that we are never promised another day with her. I know that sounds odd, and I know even with a totally healthy "typical" kid you never know what will happen tomorrow. However, when your child has been through so much, that fear just looms in the dark shadows all of the time. I wish that it would go away. Or do I? Would I value every single second as much as I do now?

For now I just take it one day at a time, and I cherish every single moment. Life post transplant is not simple....it is not easy....BUT, it truly is WONDERFUL AND AMAZING! I would not trade one single day of the life that we have had with Emma, and we look forward to many many more anniversaries to celebrate in the future!