Tuesday, March 24, 2009

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:).

Sunday, March 22, 2009

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!!!!"



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.

Thursday, March 19, 2009

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!!!

Tuesday, March 17, 2009

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:).

Wednesday, March 11, 2009

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!