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!!!