Tuesday, June 26, 2012

Five years of RS

Last week Abby turned five. So that means we have been living with Rhombencephalosynapsis for over five years now (since we dealt with it in utero as well). So much has happened in five years. When I look back I feel like we have crammed twenty years worth of therapy, doctoring, surgery, etc. in those short few years. We have gone through helmets and walkers and adaptive equipment. We have gone through sleepless nights wondering if she would ever sit up, roll over walk, talk, think normally... So much worry in such a short amount of time.

I wish I could go back in time. I wish I could sit down with the me of five years ago and tell her that it's going to be okay. That five years from now she will spend her time most days reprimanding her daughter because of her five year old attitude and moxie NOT because she has to take her to therapy or a doctors appointment. I would tell her that while her daughter will never be the traditional definition of "normal" she will create her own normal. I would tell her to sit back and watch her daughter fight like hell to learn how to do the little things like walk, sit up, roll over and throw a ball.

So now I have the wisdom of experience. I think it's why I write this blog. Maybe the me of now can talk to a "me of yesterday" in another parent. Maybe that's the purpose.

In five years I have learned that miracles come in small packages with blond curly hair. I have also learned that nothing is as it seems and nothing is impossible... NOTHING.


  1. Replies
    1. She's a marvel and so are you Kristen.

  2. Love this! Made me cry. As a parent of a child with RS, it's so hard and very frustrating at times. I'm so blessed for you and this blog because it does give me hope and just because Kinlee isn't the definition of "normal" it does give me hope for her to have a bright future. Thank you for sharing your wonderful stories and I hope the girls had a wonderful 5th birthday.

    1. Thanks Brooke! So glad that these words can give you some hope. There were so many days when I had almost no hope years ago. I feel like lie has changed so much. I am sure that Kinlee is going to blow your mind as much as Abby does mine!