Easter picture

Here are Emma and Owen on Easter morning. They were both feeling a little under the weather, and Owen literally kept his outfit on for about 2 minutes after this picture was taken....but, it was a good Easter:). Emma has fun finding eggs. We had to laugh at her as she found the eggs and THREW them in the basket....literally (picture crashing sounds!).

Here's an Emma funny for the day. Our family went to lunch the other day and anytime that her dad would hand her anything she would say, "Thank you Tim". Anytime that I would hand her anything she would say, "Thank you Mrs. F______(insert our last name:))". So, Tim said to her, "Well, aren't you little Miss Manners today". Emma said, "NO, call me Emma please". HA! Too funny!

Also, when we were on a walk yesterday, Emma said, "Today, you should call me Honey". I would say, "OK Honey". Then she would say, "No, today you should call me Sweet Pea". I would say, "OK Sweetpea". Then, she would say, "No, today call me Pumpkin Pie". And on, and on.....I really didn't realize that I had so many different nick names for her:).

Another funny (kind of???)....tonight we were at Kmart. We were in the women's clothes, and Emma gave a BIG sigh and said, "Ugh, I hate this". I said, "Well, we don't say that word, but what is it that you don't like". She gave another BIG sigh and said, "These stupid clothes!". Where does the girl come up with these things? Although she does have quite the attitude, and I don't really like that.....it still makes me smile! Is that so wrong????

Have a great week!

The Words I Needed to Hear

I've waited 5 1/2 years, and I honestly never thought that I would hear the words, but today was the day. We had Emma's IEP today, and her speech therapist actually said the words, "She is functioning at an AGE APPROPRIATE level in her receptive speech!". I have dreamt about the day that anyone would tell me that she was functioning at an age appropriate level in ANY area...so, for me (and of course for Emma) this is HUGE!!! It is a day of celebration in our house!

Other things that were SO amazing to hear in her IEP....she has gone from 30% intelligible speech to 68%. She has gone from an average of 1.6 words per sentence to 4.9 words per sentence. That is a HUGE gain in 8 months! I know that I am focusing the most on her speech because that is the area that she has made the most growth. However, ALL of her therapists were extremely impressed by the gains that she has made.

I actually achieved 2 new "areas of growth" myself today:
1) I made it through an entire IEP meeting without crying

2) I left the meeting with my head held high and a HUGE smile on my face

I LOVE Emma's therapy team!! They all work together and they have HOPE for Emma. They BELIEVE in her and her abilities. THAT is what she needs the most right now....and I am thrilled that she is getting it!

Today was an amazing day! I have known that she has made great gains this year, but to hear it from "the professionals" really was something that I needed. It made my heart so happy!

Thanks for letting me share:). She truly is a miracle in every aspect of the word! I think back to those early IEP's and today is just a miraculous day! 5 years ago I never would have dreamed that I would be typing this post:). It's a good feeling!

Made "The Corner"

Finally....today Emma has turned the corner and is feeling better. PHEW! That one really wiped her out. I had to take her back to the ped. yesterday for a different antibiotic, but this one seems to be doing the trick:). We went on a car trip today...just the kiddos and me. We were all in the car for 5 hours and they were "rock stars". They were SO incredibly GOOD! On the way home we were listening to Hannah Montana (oh course...is there anyone else?). Emma was singing the song, "Nobody's perfect". She knows almost all of the words, and she does these crazy dance moves with it...it is HILARIOUS!

It got me thinking.....(yep....here goes), the other day I was on a forum that I frequent. A mom on there is pregnant with her 2nd child. She just got the results back from her bloodwork saying that she has a 1:300 chance of having a baby with Down's syndrome. She is understandably worried, and I completely understand. This mom's 1st child has special needs, and I do completely understand her concern. I've been there....a year ago...when I was pregnant with Owen. However, what I am struggling with is the comments that some people made to her stating that "so and so" had a greater chance of having a baby with Down's...now that child is 6 and "perfect in every way". HMMMMMM....even if a child is born with a syndrome....the child is still the picture of PERFECT! That child is EXACTLY the way that God made them. I cannot look at my child and think she is anything BUT perfect....she's AMAZING!

Staying AWAY from ER

Emma has an infection in her trachea??? She is coughing like a seal, and she spiked a fever of 103 today. She has literally slept all day long. So, I took her to the pediatrician this afternoon, and she has a virus that is in her trachea. I've never heard of such a thing. So, he put her on oral steroids and an antibiotic. He said that some kids are resistant to the oral steroids and if she acts like she is having trouble breathing to take her to the ER where they would give her breathing treatments and place her in an oxygen tent. Luckily, it seems like the steroids are working. Coughing has become much less frequent. She's still pretty lethargic, but she still has her fever also. So, we're hoping the fever comes down and tomorrow is a better day. I was just saying the other day that last Easter was her 1st ever to not be in-patient. She had always been in the hospital before that. Let's home that we can stay at home through this Easter season also:).

On a different note.....5 inches of snow today????? WHAT?? When is spring going to get here? Apparently Mother Nature has not received my memo!!!

Have a great Friday!!!

Owen is a FISH!

Owen is growing by leaps and bounds....changing every day. He is obsessed with the water, and always wants to be in the tub. Sometimes I put both kids in at the same time, however it gets pretty crazy with both of them in. So, most of the time I will bath one then the other. Well, this morning as I was giving Emma her bath, Owen was standing on the side of the tub (like he always does) laughing at his sister. I went to grab the shampoo, and he FLIPPED INTO THE TUB!!! He was just giggling and laughing...so proud of himself for being IN the tub WITH his PJs AND his diaper on! It was definitely a photo moment!! He is just TOO funny! Emma thought it was hilarious:).

We've Been "Egged"

A few moments ago while I was sitting on my couch relaxing:) the doorbell rang.....it was 8:45 don't people know that I have small children????? So, I went to the door and there were colored paper eggs taped all over my front door. I opened the door to see a yummy box of chocolates on my steps with a cute colored bunny on it and a sign that said "You've been "egged"". What a fun idea...wish that I was that creative:). I wish that Emma had been awake...I think that I might put the box of chocolates back on the step and ring the doorbell in the morning (the eggs are still taped to the door) and let her go answer it:). She'll LOVE it:).

OK....time for bed. I hope that you all have a restful night's sleep. Tomorrow is our last day of school before spring break....I am SOOOOOO ready!

OH, and Emma had a full day with no hitting or pushing today! WHOOOHOOOO! I know that that should be a given, BUT that is how she shows her excitement. We have really been working on it, and I am SOOOO proud of her!! We made a special trip to the toy store (where she picked out a bat and ball.....good for appropriate hitting, right). Yeah Emma:)! Way to go little one!

Our World's Collided

On the day that she was born...our world's collided. It was not an easy transition. It was like being thrown off a cliff, falling, falling, falling, and finally plunging into ice cold water, struggling to find the surface.....I could see it, but I couldn't get there...I couldn't breath, until finally I emerged through the surface and took a deep breath....my first breath into this new world that I had collided into.

No one dreams of living in this world. When we are pregnant we do not have dreams about having a child with special needs. We do not wish for a child that has any kind of difficulties. No one says, "Yes, I am hoping that this child that is in my womb will need to live with me for the rest of her life." This world is truly a world that no one wishes to become a part of. I believe that is why the transition into this world must be abrupt....with little or no time to think about it. One day you are in the "typical" world...and the next BOOM you enter this world of special needs parents...wandering around trying to find their way. I glance back at the "typical" world where the people seem so carefree, able to do things on a whim without the methodical planning of how it will affect their special needs child.

The most difficult part for me has been the sense of being alone...as if no one understands me anymore. It's true that I am the same person that I was before Emma was born, but I have been transformed and it is difficult for people in the "typical" world to understand some of my "special needs parenting world" ways. I am more fragile than I was before. I am more sensitive...especially when it comes to Emma. I see things in a completely different way now than I did before I became Emma's mom. I long to find the mom who I can connect with...who can understand my frustrations, my joys, my sorrows, and my fears. When I'm with a group of "typical" mom's and they are talking about when their children were babies...I like to add my own stories, but all of Emma's stories are hospital related....and they make the other mom's feel uncomfortable. Heaven forbid they must be a visitor to my world for a few moments.

I can look back and say that I am thankful to be in this new world. I cannot imagine NOT being Emma's mom. I am a better person for all that I have gone through with her. Life gets easier and easier as Emma gets older. I am able to breath much more freely. At times my head is dunked back into the ice cold water, but it is brief and I am able to see things even more clearly once I come up again.

Yes, it's a completely different world than it was before I had Emma (part of that is simply becoming a first time parent), but I wouldn't change it for a second.

Thank God for Swings!

Well....let's just say that my day wasn't quite as "cozy" as I was hoping it would be. The pajama thing lasted until about 10:00...then, it was time to hit the showers and make a run to the Vortex...otherwise known as Wal-Mart. We missed a birthday party yesterday and had to get a present. Well, buying a birthday present sent Emma into a frenzy thinking that she was going to a party....then, suddenly it turned into, "It must be MY birthday". I said to her, "No, Emma it's not your birthday". To which she started to cry and repeat over and over and over and over (ok you get the point) again "Soon....soon....soon....soon!". UGH!

We return home and her amped up excitement just continued to mount....and so did her nautiness!!! Yes, definitely not a day to remain inside for my peaceful dream of a day. So, since the weather had turned into a balmy spring day in beautiful Wyoming (a whopping 34 degrees...break out the bikini!!!), I raced her to the swings...where we stayed for over an hour. Owen was really excited for the first 5 minutes or so...then he was SO over it. He remained a good sport as if he knew that sissy had to wind down or Mama was going to LOSE IT!!!

Tim arrived home and we all went out to dinner (what in the world was I thinking?). Emma was still a bit wound...her voice a bit (OK a LOT) louder than normal., but we made it through.

Both children are in bed now....coughing. Here's hoping that it is not a sign of yet another round of antibiotics in our house.

Dear Spring,

Could you PLEASE show your warm and pleasant face and kick the winter weather off on it kiester as soon as you can? We need you to kill all of those NASTY germs that seem to multiply while the winter air is hanging around. It IS April after all.....snow is in the past....we need some good ol' sunshine to shine down on us:).

Thank you!!!

What a GREAT day!

Days like today are days that I live for:)....staying in our PJ's all day, making cookies, just hanging out with my kiddos. Daddy is working today, and it's just me and the kiddos home to play:). I love to go go go too....but sometimes I just dream about having a day like today. Now, I wish the weather would cooperate just a little (OK a LOT more). 25 degrees with LOTS of wind and snow is not my idea of a good day outside, but that is just one more reason to stay inside in our PJ's all cuddled up in blankets reading:). Oh! I hear the fireplace calling me saying, "please build a fire inside of me". OK....I must go....enjoy YOUR day!

Do you love days like this? What are you doing on this fine Sunday? Is the weather crap where you are??

The Healing Place

This is going to be a rambling post....it may not even make any sense, but it is important to me to attempt to write it down.

Having a second child has caused me to really look back at when Emma was a baby. I knew at the time that it was a difficult time in my life. I knew that every single time that Emma threw up I wanted to scream and hide...hide from the reality that was my life. I knew that each time she was hospitalized it scared me to my very core...that fear that I was going to lose my baby was a fear that I experience over and over and over again. But, in those moments I also knew that I was extremely fortunate to still have my child with me. I knew that the future was before us....even though I was petrified to think about what it could be.

At times I try to embrace all of the thoughts and feelings that I had during that time. My mind can remember, my heart can feel the joys and the pains that were all wrapped into one, but I have a very difficult time writing my feelings down...or telling someone about them. Maybe it is because they are in the past, and I feel as if I should move on and bury them....after all our lives have evolved into health and happiness that we never would have dreamed possible at this time 5 years ago. But, when I sit down and really think about that first year with Emma....it will bring me to tears within moments.

Tim and I often say that we are glad that Emma was our first. We feel this way for many reasons, but mostly because we were able to focus 100% of our energy on her care at the time that she needed us most. We feel that if we'd had another child at the time it would have been very difficult to divide our time and strength between the two. We are also glad that she was our first because we knew nothing else. Granted, we knew that throwing up 4-5 times per day was not "normal", but it was all that we knew, so we were able to tell ourselves that it must be "close to normal" right? She would just "grow out of it", right?

Since the birth of Owen, I have been able to look back at the first year of Emma's life and realize how incredible it is that we all survived that 1st year. I am so very proud of Tim and myself for getting through it and continually encouraging Emma to be her very best. Every milestone that Owen achieves (incredible that they actually can meet those milestones WITHOUT the help of 7 different therapists) allows me to think back to the time that Emma met that milestone. Yes, she met all of the milestones much later than he is meeting them, but she MET them, and I am SO proud of her for that.

Don't get me wrong. I am not comparing my children to each other. They are both very unique individuals that are forging their own paths, and I love that about each of them. I am just learning so much about myself by watching Owen grow. I never realized just how difficult life was back then. I never realized how much out of the realm of normal our lives were. When Emma was almost 1 year old she was on 15 medications a day, oxygen 24 hours a day, throwing up 4-5 times a day, and seeing 7 different therapists. That was just the way it was.....and the amount of stress that went along with it I can now see was enormous.

I watch Owen and I see that he is learning to do things himself, he is not taking any medications, and he eats everything in sight. By watching this I realize how healing it has been for me to have a healthy child. I do not take ANYTHING for granted. I value every second of every day. I realize that I am finally in The Healing Place...the place that I have needed to be. I can now sit back and enjoy watching BOTH of my healthy kids playing together. It really is a GREAT place to be:).

Amazing!

It is simply AMAZING to me the calming effect that overcomes me when I hear the breathing pattern change. You know...when you're standing outside your child's room waiting for the sandman to come. I can hear her looking through the book, talking to herself, then I hear her put the book down, reposition herself, and suddenly...there it is....that moment where she drifts off to sleep. Suddenly the pattern of her breathing is so soothing. Sometimes, the half crazy mama in me creeps in and sits next to her just to soak in the calm in the room. I have even been known to climb into bed with her (which is quite an amusing sight since she is still in a toddler bed) just to listen, to watch, to relax.

Is it just me? Do you love to listen and watch your child sleep? Does it have the calming effect over you?

However, I also LOVE the laughter, silliness, constant questioning, sassiness, etc. that comes when my girl is AWAKE:).

Emma funny:
While driving in the car:
Emma...."Mama....mama.....mama"
Me...."Yes, Honey".
Emma...."You call DADDY honey...you call ME sweetie".

Geez! I DO need to get my nick names straight! I can always count on Em to keep me in line:).

Have a Happy weekend!!!

Goodbye Megan...

Yes, we are BIG American Idol fans in our house. Emma truly thinks that she will be on the show one day, and of course I will support her in anything that she does in her life.

Tonight, while watching the elimination of another American Idol contestant...I was so excited to see that Megan was in the bottom 3. Then, it happened! In the midst of her silly faces, goofy sounds, and birdlike movements, they announced that she was going home. A small cheer erupted from my living room (small.... to not wake up my 2 sleeping beauties). Then, Megan had to go and blow my celebratory dance and joy by pulling the "Mama card". She thanked her fans, the judges, yada-yada-blah-blah...then, she said it...."Baby, I'm coming home" (as she kissed the locket around her neck). Yep, that did it!! The tears streaming down my face at a girl that I really didn't like only minutes before.

While I am still glad that Megan is not going to torture us with her voice anymore...I am glad that she is going home to her Baby. I'm sure that he is ready to see his Mama again.

So, are there any Idol fans out there? I'm voting for Danny Gokey and I think Adam Lambert ("the Egyptian guy" according to my 1st grade girls because of the Burning Ring of Fire song:) is in the lead....by many many miles!!!

My Babies Are Getting Bigger

Here's a picture of my "babies". I cannot believe that Owen will be 11 months old in 4 more days! Incredible!!! I don't know why blogger has cut off part of my picture??? This picture was taken before we went out to dinner on Emma's transplant birthday. We went to her favorite place ever....PIA HUT (otherwise known as Pizza Hut). It was a great night:).

Miss Sassypants

Well, I finally heard someone say it....and I knew that I was going to leap across the room in full ninja karate style fashion...but, I didn't. I kept my cool and bit my tongue as someone said the other day, "It makes you wish that she never learned how to talk, huh?". WHAT!?!?!? Granted, Miss Em is definitely SASSY lately, but I always said that I would NEVER wish that she would be quiet if she ever did talk....let alone wish that she'd never learned how to talk!!! GRRRRR!!! Yes, if it was someone who did not know her well it would be one thing, but this person knows her VERY WELL! Although, I know it was meant as a joke, it did sting just a bit.

Here are some of Miss Sassypants favorite sayings,

"OK FINE!!!!"

"WHATEVER!!!"

"I DON'T WANT TO"

When told that it's time for bed she says, "Let's wait 5 more minutes....I'm a big girl now".

When told it's time to get ready for school she says, "Not today....today I am sick".



Although I never show her my smiling face when she is saying these things....inside it does make me smile. She just has such flare when she says them. She knows the exact context to say them in....and she has the proper inflection every time. She just makes me laugh.

5 AMAZING years

Today is a day of reflection for me. It's a day of mixed emotions. Five years ago today was the day that we had been waiting for....58 days to be exact. Emma had been active on the transplant list for 58 days, and I knew that the call for a new liver must come soon. Our 7 month old daughter was losing her energy, and she was sleeping 20 out of every 24 hours. She did not want to eat...and when she did eat she would vomit EVERYTHING that had entered her stomach. I was so scared of what our future had in store. I just could not see a happy end to the story.

Then....the phone rang! I know that I've told this story before, however in my day of reflection I feel that I must share again. That morning 5 years ago I had dropped Emma off with her babysitter. I told the babysitter that Em had very small amounts of blood in her stool that morning, and if ANYTHING were to change to call me immediately. I knew that she was in good hands, but as I drove away tears filled my eyes as a part of me thought, "Today needs to be the day". I arrived at school, and got all of my students prepared to get back on the bus to go skiing. In the winter our entire school would go skiing every Friday. I loaded my students on the bus, and decided to follow in my car....I just knew that something was not right...and I was going to be going back.

When I arrived at the ski resort, a child walked up to me and told me that they had been looking for me because I had a phone call. I yelled (quite loudly) "OH CRAP!!" (yep, that won me the kdg. teacher of the year award) I ran up the stairs and was told to call my husband. When I called Tim's school I was told that he had already left. I said, "Where did he go?". The secretary....in complete Awe said, "Angie....they called and said that they have a liver for Emma". I immediately hung up the phone, and the tears fell and fell and fell. My sister walked with me to the car as I repeated over and over, "I DON'T WANT HER TO DIE". However, once I got to the car I did not cry again....not until 10 days after transplant when she became EXTREMELY sick.

We went and picked Em up and flew to Denver to start our new life. There are so many moments of that day that are etched in my mind for eternity. One that stands out is the nurse that transported the liver to us. He had tears in his eyes when he saw Emma....we found out later it was his first organ procurement....and he had helped remove the organs and had talked to the donor family too.....what an amazing experience, but it would be SO difficult too.

We have found out that Emma's donor was skiing for her first time on that day. She was with her church youth group. She fell and hit her head. There is not a day that goes by that I do not pray for her family. We would not have Emma here today if they had not made the decision to donate Claire's organs that day.

Today, I reflect. I remember the excitement of the day...yet, I also remember the heartache that I felt for our donor family. I remember the peace that I felt as I handed my 7 month old daughter to a complete stranger...knowing that this was her ONLY chance at a life! I remember the joy when I got to hold her in my arms again, and the elation of knowing that the toughest part of the journey was behind us.

Today, I look at Emma and I reflect on the past, but I know how fortunate I am to also be able to plan our future. Emma's future looks incredible to me, and I feel so fortunate that she will also be a part of MY future!

Today is not the end of the story....but we sure are HAPPY!!!

The Real Deal

This IS the real deal.....the deal that is called life in our house. We have 2 amazing kids. Both of them are adorable, smart, funny, and can be crazy. They both have feelings, and they are both OUR children. My husband and I have a fierce love for them....just like most parents have.

Here is the deal...I'm going to let you in on a little secret. Some of you may have insight to this "secret" because you also live it day in and day out...but here it goes...are you ready?? We have just as much of a sense of protectiveness and unconditional love for Emma as we do for Owen. Her special needs are really a part of who she is, but she has the same respect from us that her brother does...and that love and respect will continue throughout their lives.

My heart tells me that everyone looks at my children in the same way. They are both unique creations...created perfectly...exactly the way that they were intended to be. My problem is that my head tells me that everyone does not look at my children with the same amount of dignity. I feel that when certain people are around Emma she makes them uncomfortable, and that makes me sad. When those individuals cannot step outside of the box and see the beauty that encompasses her far surpasses any unusual actions that she might display....I feel that injustice has been done. The Mama in me wants to lash out at the person that is glaring at her for her atypical actions, instead I go about my usual routine with a burning inside of me that doesn't know what to do.

If you know of a parent of a child of special needs, and you are looking for ways to help them...here are some ideas that I would like to share with you:
1) Look at my child when you are talking to her

2) Attempt to understand my child's actions (I know that Emma is going through a stage where she hits and pushes...if I had a magic medication to take away that one thing that Emma does....I would pay a lot of money for it. However, there is NOT a "magic cure", I AM disciplining her, but I also know that she is TRYING to tell me something and I'm having a tough time figuring it out.) So, instead of looking down your nose at me and my child...how about if you try to help me understand and TRY not to make me feel like my child is just being "A BRAT" by displaying actions that you do not feel are age appropriate!

3) If my child seems out of hand please do not glare at her or give me the look that says I should take care of her. Until you have had 5 years with her...every day trying desperately to "figure her out" you have no idea what I am going through or what I need to do with her. Just understand that she is having a moment and I am dealing with it. It will get better, but I do not want to be made to feel that my parenting styles are insufficient or that you have all of the answers. Trust me when I say that you don't:).

I know that these "suggestions" may sound whiney, and I am only one of many parents that have a child with special needs. I understand that we don't all feel the same way. But, this is the way that I AM feeling. So, I guess what I am asking is if you are someone who deals with me and Emma....please think about the things you say about her. She IS my child, and I love her just like you love your children....unconditionally!!! I always will!!

I saw a great quote today....never make a negative comment about someone's dog, their child, or their golf swing. I think I will add that to my list of life mottos:).

American Idol...Watch OUT!

Our family LOVES to watch American Idol (well, Tim won't admit it...but I know that secretly he does). Emma has watched it with AWE since she was 2 and Elliot Yamin was on. She was his BIGGEST fan.

This year it is so much fun to watch her singing every song along with the "idols". She sings exactly one note behind, but it's there....complete with toe tapping. She even has the microphone movements down to a science. She pulls the stool out to give herself a platform. Listen at the end when she says "SIT DOWN"...cracks me up!

Check it out for yourself and dial 1-888-IDOLS01 to vote for Emma:)....some day Baby Girl! Your already a star in our eyes!

Make an on-line slide show at www.OneTrueMedia.com

Expectations

As we progress through pregnancy, our thoughts of what our child will look like, what they will sound like, what they will be when they grow up are all thoughts that run through our heads. We can't wait to see this little being that will call us Mommy or Daddy. I was just like everyone else while I was pregnant with Em. I couldn't wait to see her, and begin to be a mom. I couldn't wait to teach her all of the things that I loved to do as a little girl. I couldn't wait to snuggle with her....to hear her say Mama for the first time. These are the expectations of parents in waiting.

Once Emma was born, my world that I had envisioned came crashing down on me. Not only was I not sure I would ever hear her first words, but I was told on more than one occasion that she may not make it....I may not get to see her grow up at all. My dreams and my visions of our lives together and her future became an entangled mix of feelings and emotions. I couldn't grasp the thought that she would not make it, yet I wasn't sure what would happen if she did make it and she would not lead a "good life". That is what we were told. We were told that if she did live, and she had RTS that she would not have "a good quality of life". What a mix to lay on us. We were unsure if she had RTS, if she did they would not transplant her because she would not have "a good quality of life", she was dying as we were thinking of these things, AAAAHHHHHH! Too much information, too many unknowns, too many expectations from me as a Mom. I expected the doctors knew what was best for my child, I expected that the doctors would do everything possible to save my child, I even expected that God would know that if she did have RTS (because He was the only one that REALLY knew) and she would not have a good "quality of life" that he would take her and not have an organ available during her time of need. The raw emotions overtook me. That selfish side that so badly wanted to keep her here on Earth with me no matter what.....but, that part of me that was petrified of a child with extreme medical needs who would never walk or talk.

It was decided before Em was listed for transplant that she did not have RTS....she was just "too bright" (she was only 4 months old). She was listed, an organ became available at the perfect time, she came through with flying colors, and she has forged ahead with life.

Emma does have RTS. A doctor has never confirmed this...and they never will. We will never have it on her medical documentation or her school records that she has RTS....for the simple reason that is stated above....if it were decided that Em had RTS when she was 4 months old, she would not have been transplanted...she would not be sitting next to me right now (typing on HER computer) because her life would have been looked upon as "not a good quality". I really struggle with that. The expectations that I had for the doctors were clear....save my child...PERIOD! They did do their job, but only with the understanding that she was a "typical" child that would go on to lead a "typical" life. I WANT people (doctors, teachers, therapists, etc.) to always have high expectations for Emma. She may not always meet them at the time that we expect her to....but I do expect her to meet them...and I expect others to do the sams.

Em's life is by no means "typical", but it is of AMAZING quality! She is happier and more excited about every new experience than any other child that you could meet.

My expectations of Emma are now the same as they were when I was pregnant with her. It has taken me a long time to come full circle and truly grasp that. Although Emma is a little different, I still expect her to like many of the same things that I did when I was her age. I still expect her to grow up and have a job one day.

With Emma, every sound that she has made has been music to my ears, and now as I listen to her chatting away I am in awe.

I often come to this blog to write about Emma's accomplishments (or my own....on my path with a child with special needs). I do it for my personal records. It helps me to look back and see how far she has come. However, I also do it to give others hope. When we first heard of RTS I went straight to the computer (although advised not to). In my postpartum state, I read through various articles about RTS, and the tears streamed down my face. Most of the information that I found at the time was very bleak.

I am so glad to see more and more parents of children with RTS having blogs and writing about their accomplishments.....because Our children truly do have THE BEST quality of life!!!

A little bit

Tonight, while giving Em a bath she picked the shampoo that she wanted to use. I went to grab the other one, and she said, "NO, this one" while handing me the Johnson's. She then said, "That one hurts my eyes A LITTLE BIT". I just had to laugh. As I'm writing it, it doesn't sound very funny, but it makes me wonder where she gets some of her little sayings. This morning she came running up to me with her empty cup in hand and said, "Need water...I'm really really really thirsty". It is just SO exciting to see her speech blooming. I LOVE IT! I love that I can tell her to go tell Dad something, and she'll go downstairs and tell him...and he understands. I know that everyone reading this will not understand, but I think that many of you will. I was told that she would never walk or talk....OH YEA??? Take a look at her NOW!! HA! Life is good!

Emma was class reader:)

Every day in our class a child is selected to be the reader. It is one of the "jobs" assigned in the morning. The students think it is the best job to have. After last recess, the child picks out a book and "reads" it to their classmates. I have a Kindergarten and first grade class, so my 1st graders do a pretty good job reading the book. The kindergartners know that reading the pictures is a part of learning the reading process, so that is what they do.

All of the students in my class had had a chance to read....all of them except Emma. I'm not sure why I hadn't given her that job, but she was AWARE of it! Last Thursday, as a boy was reading his story to his classmates, Em got out of her chair and went up and told about something in the picture, then she sat back down. The boy turned the page, and Em attempted to get back up again....until her aide encouraged her to sit back down. Emma looked at the aide and said (with her hands on her hips), "Everyone reads" (using her hand to gesture over the entire group) "BUT NOT ME" (as she pointed to herself).

At that moment I decided that it was her turn to read. On Friday, Emma got to be the class reader...she did an AMAZING job!!! She read the book "NO, DAVID, NO" by David Shannon. She had heard the book so many times (it is a class favorite) that she was able to "read" it word for word!! If I didn't know better...I would have thought that she really was reading the book:). Oh, and the look on her face was priceless. She was SO proud of herself (I left my camera at home that day, so you'll have to make a mental picture). It just melted my heart...as her teacher AND as her Mom. It's moments like that that just make EVERYTHING so worthwhile!