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!!!


Marissa said...

It is appalling to me that even 5 years ago, Emma's doctors knew so little about RTS that, given that diagnosis, they would not be willing to save her life.

The only reason I know about RTS is because it was brought up as a possible diagnosis for Marissa. We still don't know and we might never know. From what I researched (a lot of info having come about in the last 10 years), these kids can have a quality of life, and a very good one at that. They are capable of many great things, as evidenced by the many blogs I read of kids who have RTS. Yes there are challenges, but no one is perfect. No life is lived without challenges.

For her doctors to say that were she to have RTS, her life would not be worth saving or living makes me sad and angry. How many other children that we do not know of were given up on and left to die because of this reason? How many other kids were never given the chance to live and prove that they are more than just a syndrome diagnosis?

Having said all that, I am glad that Emma never received that "official" diagnosis, because she would not be here if she had. She is a bright spot in my day when I get to hear about how she is doing in school or how she makes her mommy so proud.

I know I don't comment much, but just know that I do read every post and I am so proud of Emma and her wonderful mommy.

Sorry for the long rant,


Cindy said...

Thanks for sharing your thoughts and emotions. It's amazing how different and how similar our walks are...we haven't dealt with a transplant, so we didn't know the "if RTS, then no organ" argument. But we've obviously seen different medical professionals with different outlooks on Natalie's current and future quality of life. We don't keep the ones who are negative.

The Joo said...

What a beautiful post. I'm so glad your sweet little girl got a chance on life and is there to brighten the lives of those around her. What an amazing story you have.

Brandi said...

Your post is sincerely encouraging to me. I wonder every day if Nathan is going to beat the odds and be verbal, have the ability to make friends, and be "healthy". I love him the way he is, and if he never speaks, I will still love him just as much. I guess I will just grieve a little more and get over it. Emma gives me hope, thank you for your post.

Kristi said...

The beginning of this post is so sad. I can't believe if Emma had a RTS diagnosis that they would not give her a transplant. It saddens me that there are people that think that our children lives aren't worth saving. I look at Noah as beautiful, smart, funny and with all the potential in the world (as I know you do with Emma.) Like Cindy said if anyone doesn't agree with me on that about Noah we will not keep them in our lives. Thanks for sharing your feelings. Love to read about Emma.

Jacqui said...

Your post is so beautifully written. You have been through so much, some of your expereinces do seem so wrong and unfair. And yet is seems you are now in a place where God is taking your tears of pain, anger and disappointment, and turning them into a nourishing spring of hope for us mom's who are not as far down the road as you. Thank you for reflecting and sharing - it really does give me courage, and it encourages me to dare to hope for the best for my Matt.

Tena said...

Beautifully written. It's somewhat a "punch in the gut" to read that even some medical professionals don't consider someone like our precious ones worthy of doing everything to protect, but we must persevere - we know the challenge is great but the rewards are greater still!!