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!

Parenting 101

Wow! If the author's of the parenting books could have been at our house during dinner tonight, they would have been highly disappointed! When I found myself saying to Emma, "Emma, I already told you that if I have to tell you again you are going to bed"...I knew that I was doomed. I was talking in circles. So, when I turned to her and said, "If you smash your crackers again what is going to happen"...and she said, "I will go to bed"....I felt triumphant. She understood what I was talking about and what the consequences were, AND even though I was not following through (and I usually only give ONE chance), I knew that she was understanding, and she did not do it again.

Sometimes we have to make exceptions. Sometimes the rules do not apply to all situations. There is a reason that I got rid of every parenting book that I was given when Emma was only 3 months old. She defied the odds by living, and I am routing our own course in parenting. It's working for us:).

Life is Good

After experiencing a total meltdown...I am definitely feeling better. For some reason, I have to occassionally "go there". The school psychologist is the one that sent me over the edge this time. We live in a small town, and we are acquaitances (sp?)with him (I am also a colleague of his since I work in the same school district). He e-mailed me that day to say that he didn't know if he felt comfortable doing the testing on Emma because he knows us (Tim and myself). I grew up in this town....I know everyone. It just really threw me off and upset me. It just made it uneasy for me. Everyone that works with Emma is my friend...people that I have known for a long time. When I first received this e-mail, I really thought that he was speaking for Emma's whole team, but as I looked into it...I found that it was just him speaking for him....and he's a little odd. It just ticks me off because he is a professional....and he needs to learn to seperate himself as the professional...from himself as a colleague/friend. I DO IT EVERYDAY!!! I HAVE to seperate the teacher in me from the mom in me...and I think that I do a pretty good job...I expect the same from others that work with Em.

Anyway, that is where my struggle came from the other day. I just find it difficult as Em gets older and more people work with her. It's difficult this year because we have a totally different team working with her. It is a learning experience because they are getting to know her...but they're also getting to know a different side of me. When it comes to Em I am protective...I have to be, but I am also still me...I am an understanding individual....an understanding individual who wants only what is best for my child.

Kind of a garbled post, but I just had to say that LIFE IS GOOD!! I want to thank you all so much for the comments. There are very few people who truly understand the emotions of having a child with special needs. It takes a special group of people to be there for you when you need it. THANKS cyber-space friends/family....you are my saving grace!

Here is how good my life is...it is amazingly fantastic actually!

OK...photobucket is having "issues"....I will post the picture SOON!

Sad

That's the only way that I can explain my feelings tonight. I am at odds with "the system"...and at the moment I HATE having a child with special needs. I love Em with all of my heart, but I want all of the "stuff" to go away. I just want to move my little family to a remote island and live happily ever after...never to be judged by anyone ever again. My heart hurts...my eyes hurt...my soul hurts. Some of my best friends are the people that I work with, but I feel like I am at odds with all of them because I have entered Emma into our school...and I have taken on a different role...one that I did not sign up for...but I am attempting to make the best of. DAMN IT!!! Why can't I just easily navigate through all of this? Why are there times that I feel such bitterness? It is the most difficult position that I have ever been in in my life. Tears flow as my heart aches for some sense of normalness.

What Was I Thinking?

I know what I was thinking. I was thinking that it was too much work...too much of a struggle. I was thinking that I was pregnant, and I was tired, and she fought me on it every morning. I was thinking that I had never been a fan of rats nests, and that's what it was 90% of the time.

Granted it has been over a year, but I found these pictures the other day and I really found myself asking WHAT WAS I THINKING??




The BEST Halloween costume ever...Pippi Longstocking:)


Then, it happened! I woke up one morning, and I made the decision to go ahead...and this was the result




Granted, the girls hair grows like wildfire, and we just cut another 3 inches off this Christmas (those pictures were from last Christmas), and she still DOES have some curl....but I don't think she will ever have that much curl again....and I miss it.

Seriously, when we didn't wash it the day of and put curl control product in it...she could've been mistaken for a miniature Bob Marley with the dread locks she had goin' on, but I do miss it:).

I never realized how long it really was!

Random thoughts

I was tagged on my Facebook page to list 25 random thoughts about myself. So, I thought I would post them here too. Here is a glimpse into my crazy mind:).


1) I have lived in Wyoming, Colorado, South Dakota, and Arizona...I would love to live by the ocean one day.

2) I dated the same person for 6 years...all through college...married him, and 6 months later he decided "that wasn't what he wanted".

3) I'm really glad that I had my "first marriage experience"...it's made me appreciate what I have.

4) My first pregnancy was completely uneventful...my first child was NOT. She has had many issues.

5) I'm really glad that I had my "first child experience"...it's made me appreciate all that I have...and I would not trade her for the world!

6) I absolutely HATE feet! I hate to see them, touch them, smell them, ewww!

7) Desperate Housewives is my favorite show. I also like the show Weeds.

8) My sister is on of my best friends. I work with her every day, and I feel so lucky! We haven't always gotten along. When we were younger, I drove her nuts! One time I shoved permanent wave solution up her nose (from a perm)...I'm really glad that I didn't blind her!

9) I'm not a morning person! I really can't stand my alarm clock...however, once I get up and start moving I become human very quickly.

10) I absolutely adore kindergarteners. The way they think intrigues me, and I try to soak in as much of their innocense as I can. If only we could all think that all people are good...and we could all get along! They just tell it like it is...and I LOVE That!

11) I was on a dance team in college. Those were some of the best years of my life. I made some wonderful friends during those years.

12) I worry continuously about the future...I always have. I think the birth of Emma has made this worry more fierce. Sometimes it really scares me.

13) My mother is not the person that raised me, and that makes me sad, but my sister has somewhat taken over that role of the person that I need to be there. I try to be there for her too.

14) I took my birth certificate to school for show and tell in 1st grade (Why did my parents let me?? Good question). When I was walking home it started to rain, so I used my birth certificate to cover my head. Everytime I see it now I laugh at all of the smears. It is hardly legible in some places.

15) I am addicted to blogs...I follow many many blogs, and most of them are about children that have issues. I am also addicted to my own blog, which very few people that "really know me" know about. I like the anonimity of writing knowing that the people that read it don't know me.

16) Last week I was driving down the road talking to my husband on the phone. I kept telling him that he was breaking up...he sounded like he was under water, then the phone died.....I went to hang up, and realized I was on my HOME PHONE!!!

17) I want to be really skinny, but I don't want to work to get that way. I want it to happen overnight:).

18) I know more about the liver than I EVER wanted to know!

19) I am part of an on-line liver support group:). I never dreamed that would be a part of my life. I get so excited when I hear that a child got "the call" for a transplant. I always tell my sister, and she asks, "Where do they live?". I never know...so I just say Cyberspace.

20) My husband (Tim) and I were partners on many projects through college, but we never liked each other. So, when we met years later at a Karyoke bar and sang "Summer Lovin" we knew it was meant to be!

21) My least favorite saying in the entire world is, "God only gives you as much as you can handle".

22) I am in my 9th year of teaching at a rural school. I teach Kdg. and 1st grade. I feel like my families at school are my own families.

23) The 2 months that we were in Denver for our daughters liver transplant are some of my best memories (some scary ones too). I never realized how wonderful people are, and how much people really do care.

24) When I retire I want to travel with Tim all around the world...on 2 teacher's salaries....a girl can dream, right?

25) Phew! This is almost finished! I wish that everyone in the world could take a turn having a child with special needs.

5 Years Later...Look at You NOW!

Five years ago, on this day life was throwing us for a loop. Nothing seemed to be going in the right direction, and we were stuck at a big stop sign in life. There would be no going any further until it was confirmed. We could not travel any further down the road until the phone rang and we received the news. We had been waiting since December 10th, and each day that clicked by was one more day that we would stay...stuck at the stop sign....looking for some sense of direction...some sense of hope.

On January 21st, 2004 we were notified that Emma was officially placed on the transplant list, and we were off again. We were traveling down the road. Sure it was a road with an unknown destination, but we were traveling...and we had hope. The silver lining was on the horizon, and we just had to keep moving to get there. It was tough to see our 5 month old daughter struggle so much. She became more and more jaundice every day. She wasn't able to keep food down. She required oxygen at all times. BUT, we had hope!

5 years ago, at this time, we were struggling. We questioned WHY? every single day. Why was this happening to our baby? I remember a time that Tim and I went out to dinner, and we discussed the "what if'...the ultimate..."what if she doesn't make it?". It was a very real possibility that loomed over us like a black storm cloud. It followed us as we continued on our journey....but, the rainbow was in sight. We knew that the storm cloud could easily be replaced by the rainbow, as we waited for the next leg of our journey....THE CALL...the one to tell us that our baby's new liver was ready. We waited...and we waited...

I look at Emma today, and I can't help but have tears of joy. The joy that I feel that she has made it through so much. She is a warrior princess! She is my hero! She is an amazing spirit! The truth is...she does not remember back to the time 5 years ago when her life was hanging by a thread. I'm glad that she doesn't remember it, but I'm also glad that I do. Thinking back to the difficult times pulls me through some days when life seems so difficult. Thinking back to the tough times makes me realize how much of a fighter Em truly is. She has overcome such incredible obstacles, and I look at her today and I smile. She is Emma...and I am proud!

Prayers???

Miss Em is sick...and I'm hoping that it's the flu. It's amazing where my mind goes sometimes...scary places that no mother should have to think about. It is "just" the flu, right? She was fine yesterday, she went to bed, she woke up at 2:00am throwing up with a 103 temp. She continued to throw up throughout the night...just small amounts each time. This morning when she threw up it was A LOT and it was brownish red....which led me to think of blood. I was ready to call 911 or jump in the car and drive like a bat out of he** to the hospital. My husband calmed me down. We have broken her temp...but she is very lethargic. She threw up again, a smaller amount this time, but still the odd color? ARRRGGHHH!! I hate this! I'm sure that it's nothing, but it freaks me out that it could be something.

Em's big debut

I DID IT!!! I figured out how to post video:). Now, I have better videos at home, but this is the one that I had on my computer. So, without further ado...here is Miss Em counting to 15...then 100:)!

Make photo slide shows at www.OneTrueMedia.com

Weight Loss Challenge 2009

It's that time of the year again...time to set the New Year's Resolution and THINK THIN!!! I got to skip that part last year, as I was enjoying every minute of watching my waist line increasing by the day. However, this year I am paying for it. I have 11 pounds to go to get to pre-pregnancy weight...and at least 21 to get to where I would like to be.

I am excited that I was finally able to buy regular underwear...I've been loving wearing the really cute maternity ones that I bought...but, let's face it...they're not the most flattering things in the universe. I was skeptical of buying any until I was SOMEWHERE close to my size.

I had a friend stop by the other day that had a baby 2 days after me. She lives in another town and we hadn't seen each other since right before our boys were born. Well, she gave me the motivation to think thin....she is skinny, skinny, skinny. She said that she hasn't weighed that weight since Middle school! Yea...I guess it's time for me to hop on the losing weight train!

OK, just had some fish sticks with the kids for lunch....do you think THAT will help me lose weight? UGH! I think I can, I think I can, I think I can!!!

All By Myself

Ahhh, the silence....I'm enjoying it for the moment. However, after a little while I begin to miss the chaos that comes with being a mom of little kids. I just got done with a meeting, Em's still at school, Owen's still at daycare (nap time), and Tim has just left to go out of town. I am completely enjoying the time to sit on the couch all by myself for a few minutes and just breath.

Yes, I still have the thoughts that run through my mind. Is Em going to behave on the bus today as she makes the long trip to town? She is still struggling with hitting. I wish SO badly that I could figure out why she does it. It is such an impulsive act. I know that it's not meant to be mean or hurtful, but she just does it....I think before she even thinks about it. I struggle with it every day. Even though I know that she's not trying to be mean....it still doesn't make it right...and the other kids do not understand. SO frustrating!

I have the thought that both of my kids are on the verge of sickness. I took them both in for sinus infections yesterday, they are both on antibiotics. Owen has an ear infection and he's cutting 4 teeth all at the same time on top of it. It could be a REALLY long night! I hope not!

Tim is gone until Friday night. Although I do enjoy maybe a night to myself....I miss him so much after the first day. Also, Emma just cannot figure out where Daddy is. She walks around saying, "Where's Daddy...OH, at work" over and over....but never really grasps that he is gone. We are planning to do iChat while he is gone this time so that Em can see him and talk to him. We'll see if that helps or hinders her coping ability.

For now....I'm just enjoying breathing in...and breathing out. It's a very important thing for any parent to do...especially those of us that have an extraordinary child:).

Videos have been requested, and I am definitely working on it. I would love to share my Em with all of you! However, I am currently running into 2 obstacles. #1 when you get a camera in front of Miss Em...she clams up (so, I have to be sneaky) and #2 I'm not sure how to post videos, but that part I will definitely figure out.

My Little Helper

Oh how I love my sweet angel girl. She is such a fiesty little thing, but she can be the most loving creature on Earth at the same time. Lately, she is very determined to help her brother learn to be a "big kid". She is trying to teach him how to sign (too cute to watch her tell him "more...Owen, say MORE" while she's pushing her hands together...then she pushes his hands together. I never thought I would see the day that she would be teaching someone else sign language. It makes this mama's heart swell with pride.

Emma loves to help with Owen's bath. She likes to put his clothes in the dirty clothes because, "They are stinky". Then she will get his towel. Tonight, she asked, "Where do I put it?". I said, "On the counter". She said, "Oh, right on the counter". Then, the towel kept slipping off. She was a little frustrated and said, "Can't do it! Too hard!!!". She is just cracking me up. Her speech is just blossoming, and it is very spontaneous (before she was more echolalic...repeated everything). We've been back at school for 2 days and I've had so many comment on how much her speech has improved. It is so nice to hear others comment on her progress.

Now....Emma's having a few issues in the diarrea department and that is frustrating. I think her allergies are kicking into high gear...which worries me a little. It also worries me that diarrea causes medication to not absorb at well, and her immunosuppression needs to be absorbed. I continue to tell myself it is out of my hands. I just need to pray for the best. I've started her on a yogurt regimine along with Immodium. We'll see if it works....keep your fingers crossed.

Also, Em's had 2 days at school with no hitting, pushing, or pinching!!! That is a big deal in our house!! Keep up the great work Miss Em! You are our big girl!

Is It THAT Obvious?

We all went to Wal-Mart yesterday. Tim was spending a little too much time in sporting goods, so I decided to take Em and head over to beauty to get a few beauty products:). The strangest thing happened...a little unnerving? There were 4 young guys (late teens early 20's) that all ran back to the garden center. One of them saw us and came walking back. They were acting really strange. The one came back and said to me, "Excuse me...this may sound strange but is your name Cindy?". I said, "No". He said, "Oh, you just looked like a Cindy". I said, "No, not today", and I went on my way.

I got to the furthest cosmetic aisle and realized that he was following me (with one hand in his pocket)...and there was now no one else around. I grabbed Em's hand a little tighter as he came up and said, "OK, I know this is going to sound really strange, but I am here with my church group and we are looking for people to pray for and you looked like you could use some prayers. I was wondering if there was anything specific that you needed us to pray for. Are you having financial difficulties, marital problems, or anything else?". (I know that I am an extremist, but all I could think of was the girl during the Columbine shooting who said she believed in God and got shot.) I simply said, "No, we're doing just fine". He laughed a little and said, "Really, everything is good?". I said, "Yes" and walked away.

I quickly went and found Tim and told him about it. Of course we didn't see the guy again. However, it really bothered me when I got home. I mean at the time the guy just seemed creepy. However, what if they truly were with a church group....and what made me "look" like someone who needs prayers? Is it THAT obvious that I am a trainwreck? Really, I feel pretty put together. I mean, I have my moments, but overall I feel pretty good about where my life is.

So, I guess folks. I need you to pray for me....because, I may have just turned away the one sign from God that he was trying to tell me that I definitely need prayers?

Is it just me, or does the whole thing sound weird to you?

A Look Back at 2008

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

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

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

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

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

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

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

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


Little man:)

Happy New Year!

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

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

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

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


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


Christmas jammies


A Christmas jammie model in the making


That's the present that I want:)


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


Handsome little man


Have a safe new year!

Happy Blogiversary

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

Merry Christmas and "the program":)

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

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


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

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

First time eating ribs....LOVED them!




And, of course, the bath afterward


He does clean up well


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

Burning Eyes

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

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

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

Random Thoughts...and some trivia:)

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

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


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



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

Tomorrow

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

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

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


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


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

No Doubt About It....

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

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

I'm Still Here:)

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

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

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

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

Milestone Alert!!!!

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

More Polar Express

Let's see if my pictures will work now?

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


Here's a picture of the train


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


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

All Aboard.....

The Polar Express!!!

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

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


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


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

Waiting List for those going crazy:)

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

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

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

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

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

Thankful

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


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

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

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

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

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

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

The Other Shoe

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

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

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

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

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

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

What, Where and Why?

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

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

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

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

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

To Worry or Not to Worry?

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

And the Pendulum Swings

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

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

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

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

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

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

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

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

Trying to find "my place"

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

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

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

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

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

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

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

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

I'M THANKFUL FOR....

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

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

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

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

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

getting ready for the program


My little star


I AM SO THANKFUL FOR TODAY!

Not the "P" word!!!

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

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

Stranger Danger, Getting Old and SICK!

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

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

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

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

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

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

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

My 5 year old teenager...OY!

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

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

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

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

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

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

Overreacting???

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

A little background:

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

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

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

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

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

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

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

Bloggers please share

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

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

Icky Icky Icky

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

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

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

We're off to see the Wizard

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

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

Happy 6 month Birthday Big Boy!!!

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

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

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

Love,
Mama