Our Little Cheerleader

I have to admit that we are not huge football fans in our house. However, I always try to root for one of the teams during the superbowl. This year the Colts and the Bears are in the Superbowl. Granted I have no big ties to either team....which has made me think that I need to find out more about the teams:). I have followed a Caringbridge page for a little boy named Donovan http://www.caringbridge.org/in/babydonovan/. The family LOVES the Colts. I have always had a smile on my face as I read how much they love their little Donovan....and their amazing Colts. Little Donovan, just 2 years old, earned his angel wings the day before the colts played their last game. I honestly feel that they won that game (just barely....at the end) just for Baby D. So, a part of me really wants to root for the Colts.

HOWEVER, the other day we were in the basement sorting through Emma's clothes (ones she has outgrown....and upcoming hand-me-downs). She reached into a box and pulled out a dress. She INSISTED on putting it on. When I looked at it again. I realized it was a BEARS cheerleading outfit. Apparently Miss Em has her own team that she plans on rooting for. AND, it looks like she has found her true calling in life (Aunt Beck....she wants YOU to be her agent). I'm thinking that she will go far with this career move.

Here she is practicing her dance moves:


Here she is working on her "girlish figure":


Then, she MUST practice her posing for all of those photo shoots:


Who could say no to this sweet face...with all of the beautiful hair:


So, it looks like our houshold will be split this year on who should win the Superbowl. I would still like the Colts to win.....for the honor of Baby D. However, my little Bears cheerleader does make it difficult not to think about the Bears as a possibility. So, I guess that I will be happy either way!!!

Stay at home Moms

I have been home with Emma for the last few days. Our babysitter's children have been sick, and it is very difficult to find someone else to watch Miss Em. So, I am glad to take on the job. However, does it make me a bad person to say that I don't think that I could do this every day? I truly value those mother's that do stay at home...I think it is wonderful. When I stay at home with Emma too much I just find myself getting more and more frustrated...with her, with our situation, with the world, with EVERYTHING!! I find myself just letting her watch T.V. (before I was a Mom...I said, "I would never let my child watch TV too much......I said never to many things....before I was a mom). Maybe if I was a stay at home mom I would go out and do more in the community? When I am just home "sick" with her (although she is not sick....a teacher cannot be seen out in public on a school day). I feel that teaching is the best job to have if you have to work as a mom. I get long vacations, and I get off at a decent time. However, I feel the pressure from those around me who tell me, "just stay at home with her". Well, #1 I CAN"T stay home....my husband is also a teacher, and one income is not enough to support us! and #2 I don't think that I would value my child as much if I was home with her ALL of the time. Is that a bad thing? Probably! Is it bad to think about having another child....and not planning to stay at home with that one either? Is someone else truly raising my child? I look forward to the day that Emma can come to school with me and be in my classroom. I know that if I give my job up it would be very difficult to get another teaching job in this district, and I truly have my dream job. I have a classroom of 10 children, and I love the people that I work with. Then, there is always the fear that creeps in that my babysitter may move or say she doesn't want to watch Miss Em anymore....THEN what do I do.

See, staying at home just makes me think too much! I think about the future and all of the "what if's"....it's not healthy!!

The King Penguin

My students are learning about penguins....all kinds of penguins. Yesterday we were discussing the king penguin. The king penguin weighs approximately 30 pounds and is 32-35 inches tall. Well, guess who else weighs 30 pounds and is 32 inches tall (I know....my last post kind of gave it away)....Miss Em!!! I wonder how she would do if I sent her to Antarctica:). I'm not thinking that she would do so well:). Still, I found it to be an interesting association.

We've reached the big 3-0!!!!

No, I am not talking about 30 years of age:)....that TRULY feels like forever away for Miss Em....and that's OK by me:). I mean that we have reached a HUGE milestone of.......are you ready for this????.......30 pounds!!! I am not sure that I ever thought the day would come! 30 pounds is HUGE for us:). Granted I used our home scale to weigh her because....are you ready for THIS???......we haven't been to the doctor AT ALL for more than 2 months. Yes, 2 months!!! Now, I am knocking HARD on wood!

Emma is truly making so many gains right now and it is fun to watch. She is starting to talk more and more (something that I have dreamed about all of her life). She is healthy, and she is gaining weight. What more can I ask for? Now, I could pass on the orneriness that she seems to be trying out, but hey...it goes with the 3 year old territory, right? I'm lovin' it:)!

You are my sunshine

The sun is shining through once again. I believe that it is part of the roller coaster of being a parent of a child with special needs. Some days/weeks/months are very very dark. I try to keep those periods of time short....and to myself. However, it does help me to write about it. It does not make it go away, but it makes it more bearable. I always look forward to the moment when I can see the bright and shining light once again. I can see the sun shining through

and the name of the shining sun.....is.....EMMA

The beautiful sleeping face that pops the shower curtain open each morning and says, "haaaaa" (her new hi....we don't quite have the long i sound yet....but, we'll take it). The sound of pitter patter feet in the middle of the night, and the finger poking me in the eye along with the sweet little voice saying, "mom, mom, mom" then making the drinking sound to let me know that she would like something to drink.

Yes, my "normal" may be a bit different than others, and I do sometimes grieve over the life that I have dreamed about every day (the one where I would have the child at the top of her class....the one where I could read the book What to Expect the Toddler Years...and I could relate to every single page....please note that all of those books were burned in my house when Emma was 3 months old:). However, one dream that I always had is being achieved every single day....I DO have the perfect little girl that I always dreamed about. She was made absolutely perfectly....the way SHE was meant to be.

Somedays I think my mind just needs to take a vacation and go somewhere else. I believe today is a day that it should have done that....because it is thinking entirely too much! Emma and I have the day off today...YEAH!! We have the day off for "equality day"...otherwise known as Martin Luther King Day. My husband does not have the day off....apparently they do not have enough ethnic diversity in the community??? Today is also my brother-in-laws birthday. We were invited to go out to breakfast with my sister, brother-in-law, their 3 boys, and her mother and father in-law. Emma was eating like a champ, and I was actually breathing (I am usually holding my breath at a restaurant, scoping out where the bathroom is, and contemplating the quickest and easiest path I can take to get to the bathroom once my child has thrown up). However, today seemed like a different day. We were going to make it through this meal. All was going to be OK. WRONG!!!! Emma shoved too much toast into her mouth, gagged, and yes you guessed it....threw up. Luckily, I had the "bucket bib" in place and caught all of it. However, the humility of it hit me like a ton of bricks. Tears flooded my eyes and flowed down my cheeks as I quickly walked to the bathroom to empty the contents of the bib and wash it out. Of course I quickly composed myself and came out looking fresh and ready to take on the world again. I may look that way on the outside, but everytime that happens a little piece of my dignity goes along with it. Times like that make me look at my future....a future that no one knows. Will I one day have a 12 year old that still has to wear a bib and throws up?? Will this ever get better? Tears again...here they come! Where is the God that is supposed to listen to my prayers? How many times have I prayed in the last 3 1/2 years? Yes, my child is with me, and for that I truly am thankful. I just want her to have an easier life. I need help! Words of advise from other parents that have been there? How do you cope with what may/may not be in the future?

2007....fitting in????

I find myself lost as 2007 begins. I am slowly removing myself from existance. It may sound harsh, but I believe that is what is happening. I've been trying to piece together why I just want to remove myself from all around me. I can't completely put my finger on it...but I do know that I am tired of my "new normal". Sure, the Polly Anna in me wants to say, "There is no such thing as normal" or "everyone has their troubles" or "Normal is just a setting on the dryer". I know that it's true...each and every person has something going on in their lives that others may not consider "normal". Here's the kicker....my "not-so-normal" life is SO obvious to anyone that comes into contact with me. My child who I love dearly does not talk....and she throws up...A LOT (on top of the 10+ surgeries that she has had in her short life)!!! I just find myself longing to at least look "normal" again. Is that so wrong? I'm not embarrassed or ashamed of my child. I love her, and I would fight (and I have) for her. I just wonder....when will this new normal feel OK??? I've been struggling with this for 3 1/2 years. In so many ways it has become much easier, but in some ways it is getting more difficult. The older Emma gets...the more people expect her to be able to do. The bar continues to raise....and we continue to plateau (or make very slow progress). When can I reconnect with society and become the "wall flower" that I once was...simply blending in with my surroundings and going with the flow. I guess I just want to fit in once again. It is human nature to want acceptance, and I believe that it is even more important to feel that your offspring will be accepted. So, 2007 may be a year of learning to accept my new normal....that is my hope and my RESOLUTION!!!!

Wonderful Christmas break!

Well, today is the last day of our break. It is so nice to have a spouse that is also a teacher. We have enjoyed every moment of our time off together, and we look forward to the year ahead.

I thought I would share a "few" pictures:
The first is what Emma thought of Santa this year...petrified would be a good year. However, being the "GREAT" Mom that I am...I just HAD to get a picture. So, here it is


So, Christmas morning when Emma heard that Santa had been to our house....and he left lots of toys. I THOUGHT she would be excited. She was..petrified. .. she tought he was still there. We had to practically drag her out of her room. She clung to her Dad's leg.


She enjoyed the rest of the day...and she looked oh so sweet:)


Two days later Emma got her first professional hair cut. I have cut about a foot off on my own, but I decided it was time for someone who knows what they're doing to give it a try.

She would only sit on the chair if the beautician's daughter sat on the chair first:).

Can you tell that she got it cut? Not really, but it did make it easier to comb through, and that was the goal!

We also enjoyed a GREAT trip into Yellowstone National Park on a snow coach over break. To see the beauty and peace in the park is magical. The shimmering snow that has not been touched is so amazing! Emma loved it too, and she was truly an angel for the entire trip. Here are a few pictures:








Happy New Year to all!!! 2007 is going to be a FABULOUS year!!!

Tis the Season:)!!

The season is upon us. Time for turkey and fa la la la la. It is my favorite time of the year. The weather is cool, but most of the time it is still bearable. Everywhere you go people are still in the Christmas spirit, AND I get to eat Auntie Em's sweet potatoes (from the Mayberry cookbook). Yes, they are my FAVORITE part of Thanksgiving. It's the only time during the year that I get to eat them.

It is also my favorite time of the year because Mr. Snowman gets to make his appearance in the front of our house where he is lit up by all of the other Christmas lights that surround him. The day that we put our Christmas lights up is NOT my favorite day of the year. It comes with high tension...and extremely high ladders (which I always get talked into going up). However, by the end of the night...the beauty of the house and the glow of the lights warms my heart. It is another reason that I love this season.

We lit up the outside of our house last Sunday. This was the first year that Emma insisted on "helping". She got RIGHT in the middle of the lights and wanted to hand them to "mama". PERFECT! It may have added a little more tension to an already intense day, but the joy on her face when she knew that she helped made it all worthwhile. Here is a picture of our little helper elf. I hope you all enjoy this part of the season as much as I do!

Blast from the "past"

I know that Emma's broken arm happened over a month ago, but I just downloaded the pictures and I had to share them.

Here is Emma. She broke her arm at noon the day before, spent 5 hours in our local ER only to be told that we had to drive to Denver, drove 9 hours (through a MAJOR snow storm) to get there at 3:30 AM, "slept" for 3 hours, then got ready for her big surgery. Still, laying in this bed, getting ready to go into the ER, she wants Mom to "smell her feet" and she has a HUGE grin on her face (her arm has been broken now for 18 hours!!!


The wonderful attire that you get to wear if you are the fortunate one to accompany the child to the ER until she falls asleep. We'll never leave your side until you know you are safe little one. Oh, so the clothes scare you???? (remember Mom and Dad are running on little to NO sleep...and the "clothing" is not very flattering)!


Coming out of surgery to.....one of the same nurses that we had post transplant!!! Amazing!!! However, this time she has juice...AND she gave me a PRETTY purple cast!!! OH, and my belly doesn't hurt:).


As long as I have my buddy Elmo to help hold my arm up....life is GOOD!!!


After I got out of the hospital...I got to see my friend Ronald McDonald...and I actually LIKED him this time!!!


3 weeks later, my cast is off, and I'm back on my wild way! I'm running, jumping, and LOVING life:). My mom says that she wishes EVERYTHING was as easy as my broken arm:)!!!

Angels Among Us

I'm feeling a little emotionally empty right now. I never would have imagined that I would know so many children that would be gone from this Earth at such a young age. It just makes me wonder WHY? These children have struggled, they have fought such a difficult battle, still...they die? The parents are left to wonder time and time again what their child would be doing today...if only. Yes, you hear the typical..they are in a better place, they are not hurting anymore, they are with God. However, the parents are left here with a huge gaping hole in their hearts, and the big question....WHY? A parent is not supposed to bury their child. That is not the way it is supposed to be. It just makes me angry. It leaves me feeling helpless. What do you say to the parent that is grieving? I do not know what they are feeling. I have thought numerous times that I might become the person that would know what they are going through, fortunately my child is still here today. What do you say to the person that is living their worst nightmare? I'm so sorry just doesn't seem to cut it. Oh how I wish that I could turn the clock back for these parents and make the outcome for their sweet children different.

Godspeed Little Jackson and Dillon. May peace comfort both of your parents as they try to endure the pain of their loss.

Happy Halloween???

I hope that you all had a wonderful Halloween. Emma had so much fun! She was absolutely terrified of all of the masks, but she was so excited to be Elmo....and she was SO cute (not that I am partial at all). Here are a couple of pictures (if I can get them to work....Flickr has been a little temperamental lately).



This one was the day BEFORE the broken arm:). I was standing behind the camera, pointing to my chin, and telling her to smile. She is such an imitator:).

I'll just say it

I'm just going to come right out and say it....while I'm feeling "brave"...my child has special needs. Just writing those words makes the tears jump right out of my eyes to flow down my cheeks. It's amazing! You'd think after 3 years of this my tear ducts would have dried up by now, but I can make my shirt go from dry to soaking wet on the top in 60 seconds flat. Yes, everyone knows that she has medical needs, but when will people figure out that she has "other needs" as well. OR, have they already figured it out...and they just don't say anything? It's amazing the havoc that it wreaks on my brain and my body day in and day out! I feel as if I have aged 20 years in the past 3 years. Yet, I love that girl just the way that she is. My fear is that the rest of the world may not accept her the way that I do....the way she deserves to be accepted. She has battled too much in her short little life to not be looked at with the highest regard! I will fight tooth and nail for that child....but, why should I have to....shouldn't that just be a given?

Just my random thoughts for the day:)

Which muppet would I be?????

You Are Kermit

Hi, ho! Lovable and friendly, you get along well with everyone you know. You're a big thinker, and sometimes you over think life's problems. Don't worry - everyone know's it's not easy being green. Just remember, time's fun when you're having flies!

The Muppet Personality Test

My Child's Name is EMMA!

Yet another visit to the hospital...another surgery under our belts....and more doctors pushing for Emma to be seen by the genetic team. Guess what folks....WE ARE NOT DOING IT!! I don't need someone to tell me that she is not talking yet. We have had every organ in her body inspected. Truly, what would a genetic team tell us that we don't already know? Yes, they may give a "name" to what she has, but I want my child to be known as Emma....not some name to a syndrome! True, that may be a part of who she is, but that does not define my child....END OF STORY!!!

The snow that I was so excited about in my last post turned into my nightmare. Soon after I posted my last entry I had walked into the kitchen, then I heard Emma crying. She had fallen off of the couch. I picked her up and tried to comfort her. It was a cry like I have never heard before. She would not move her arm and she screamed bloody murder and said, "OWWWWW" (a new word for Miss Em) anytime I touched it. So, I took her to our local ER and found out it was broken. We sat for 4 hours while they decided what to do. After talking to Denver about our last "simple procedure" (the one where Em crashed on the table and ended up in ICU), the anesthesiologist decided that he wasn't comfortable doing the surgery (she needed 2 pins put in). So, at 5:30 in the evening we left for our long journey to Denver (a 9 hour drive). The "beautiful" snow turned into horrible road conditions. At one point we had to drive 30 MPH for 60 miles! UGH!

Well, 3 nights in the hospital and a purple cast later Miss Em is on the mend. This stay in the hospital has made my heart feel a little more raw. That is the only word that I can describe. When you think of a broken arm you think of a "normal" kid thing, but having a 9 hour drive with doctors mentioning genetics on top of it just makes you realize that people cannot just accept that this is our "normal" for our little girl. Everytime I think that my heart is healing....someone else stabs me. I accept her for who she is, and I expect everyone else to do the same. Is that so wrong????

Winter is here?

I know that it seems a little early...but, I woke up this morning, looked out the window, and saw the soft white blanket covering the Earth. I love the snow! It makes everything look so fresh and clean. The cold.....something that I am not ready for quite yet, BUT they do go hand in hand...so, bring it on:).

We got to go out and brave the snow early this morning. Emma had to get her blood drawn. She was SUCH a big girl! She didn't even cry! WOW! I never thought I would see the day. Of course, I had her pick out her sticker and the kind of sucker she wanted before the blood draw. The tricks of the trade of a Mom who has to hold her child down time and time again.

Enjoy winter where ever you are. Yes, I'm sure that even Lisa is enjoying "winter" in Florida...with her 85 degree days:).

That euphoric feeling.....

Do you ever get the strange feeling that you are an outsider looking in? (No, I do not have multiple personalities....do not call in the straight jacket). I went to Wal-Mart (sometimes I feel like I should just move my bed into that place). I went to get a prescription at the pharmacy....imagine that. All of a sudden Emma gets whisked off by the pharmacist to go behind the counter to see all of her "pharmacy buddies"...how many of us get to go back there? Then, 3 people start discussing Emma's hair saying things like, "I'll bet it's curly like that because_______, and I'll bet she gets the color from__________". Hello folks, how about if you just ASK HER MOM....who is OH YEAH standing RIGHT HERE!!! Hmmmmm?? Bizarre feeling!

Well, I get Emma back from her expedition and head to the front of the store. I chose the self check out. I get there to see an elderly lady looking curiously at the machine wondering, "where is the clerk". I explained to her that it is "self check out". She said, "Well, who checks you out". Guess who checked her out....Yes, it was me (I used to work at Wal-mart, right). Then, she wanted help with the money. So, I did that too. She said that I was an angel and she gave me a mint from her purse. As she was walking away she turned with a gleam in her eye and she said, "That child of yours smiles all the way through her eyes. Her heart is pure". Then she walked away?

Do you ever wonder why a certain chain of events happens all together? Do you ever wonder if you are just a pon on a gameboard? I know....the bizarre thoughts that go through my mind. Aren't you glad that you captured a glimpse of them tonight???

1st day of preschool!

Well, we made it through the first day. The tears, and the drama......OK...they only came from me! LOL! Emma LOVED it! She was hugging all of her "friends" the minute they walked through the door (even though she had never met any of them). I honestly don't think she even noticed when we left. She had so much fun giving the dolls a bath and feeding them, playing with the cars on the race track, playing with the cars outside, having a snack, making a Chicka Chicka Boom Boom tree...whew! I thought she would fall down from exhaustion, but NO! She wouldn't even take a nap for me this afternoon!

It really was a great day all the way around. Tim and I dropped Emma off at school, then we went and did a presentation at the high school on organ donation. I felt really strong, but soon was moved to tears...and I was afraid that I wouldn't be able to stop them (it was during an I-movie that I had made at the beginning. Luckily, by the end of the movie I had regained my composure, and we did a fantastic job (if I do say so myself...I mean it is definitely something that I feel confident talking about). We finished in time to have a nice lunch at a restaurant before we went to pick up Em. I felt like I was playing hookie from work (I guess I kind of was...I had taken a personal day).

When we went to pick Emma up she was still playing hard with her new friends. Ahhh, the innocence of children. They just see everyone as good. Isn't that the way it should be? What a wonderful day!

Was this how Van Gogh started?

Emma's therapists brought some large ink pads over the other day. They also brought many stamps thinking that Emma could do a "cute little stamping project". Emma took the 1st stamp and with a gleam in her eye she tossed it across the room. Then she proceeded to stick her entire hand on the stamp pad...and that is where the fun began. The therapists soon realized that the clothes needed to come off. So, Emma found a new joy in life. She had so much fun...as the pictures below will tell. She also made an awesome picture for our wall...far better than ANY stamps would have done!







I'm thinking about sending Em's GI doctor this picture and asking him...."I'm pretty sure this isn't jaundice (from liver disease)...but, what would cause this discoloring of her stomach? LOL!!! This is actually her tummy....the finished product!!





Van Gogh.....EAT YOUR HEART OUT!!! Do you think this is how he started??? HMMMMM?????

Go Broncos!

Emma is a true Bronco fan through and through thanks to Aunt Becky and Uncle Joe! We are pretty sure they won yesterday because their petite mini cheerleader was wearing the jersey. What do you think? Wouldn't you win a game if you saw that sweet face? Go Broncos!!!