Saturday, February 28, 2009


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 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 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!!!

Tuesday, February 24, 2009

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!

Monday, February 23, 2009

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 her teacher AND as her Mom. It's moments like that that just make EVERYTHING so worthwhile!

Sunday, February 22, 2009

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:).

Monday, February 09, 2009

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 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/ are my saving grace!

Here is how good my life is amazingly fantastic actually!

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

Thursday, February 05, 2009


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 eyes 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 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.