Undiagnosed Children’s Day

You may also like...

13 Responses

  1. Oh man, Heather. I had no idea that Aiden didn’t have a diagnosis. I guess I just assumed that he had CP. WOW. That is really hard. You just have nowhere to pin yourself, nowhere to feel really included. Man.

    Well, if it makes you feel any better, I consider you part of my SPN mamas group!!

  2. Shasta – Thank-you and I totally feel part of your group. I can be pushy that way and find room for myself. Lots of people assume he has CP and sometimes I just go with it. I’ve even had doctor’s assume that. It’s enough of a catch all diagnosis that we fit close enough but also not close enough for the state to care when they’re doling out services.

  3. timewellspent says:

    Thank you for this! My “mystery boy” is about to turn 4, and I *still* trip and stammer over questions about him. It’s very lonely and frustrating — what would I do without online mamas in the same boat?

  4. Ramee says:

    Hi there. Found your blog through “Uncommon Sense.” Our daughter, Mabel, is undiagnosed and I am so thankful for this day! I can’t wait to read more about your son and keep in touch with you. Our family blog is http://www.rameelinlarson.com. Thinking of you guys today…

  5. Joanna says:

    I am right there with you. Tess has that stupid box checked off with CP as if that really means anything for her or us. “We need a label so she qualifies for services” is the refrain. I never know how to answer a direct question of “What’s her diagnosis?”. Tess has an “unknown genetic condition” which has never been found in any other person as of yet. When her very kind geneticist at Children’s finally told me one day after my asking for the millionth time what her diagnosis was and when would we know, “She is your daughter. A diagnosis would not change who she is to you. If I gave her a diagnosis, she would still be the same exact child you walked in here with before you knew.” And then it hit me, the diagnosis I so desperately was seeking was for ME not for Tess. I was the one who NEEDED the answer. A Special Needs version of “What to Expect”. A place where I felt we belonged. And man oh man, did I want a group to hang my hat in. I am very grateful for the insight that I got that day from that doctor because it really helped give me some much needed perspective, but there are still days where the “unknown” is a very lonely and scary place to be.

  1. June 15, 2012

    […] you’re new here read about our life without a diagnosis, and how it effects my marriage, and what I want others to know about my life, and enjoy this […]

  2. July 16, 2012

    […] you’re new here read about our life without a diagnosis, and how it effects my marriage, and what I want others to know about my life, and enjoy this […]

  3. October 6, 2012

    […] you’re new here, please read about our life without a diagnosis for my son who has a significant disability, and how it effects my marriage, and what I […]

  4. October 18, 2012

    […] you’re new here read about our life without a diagnosis, and how it effects my marriage, and what I want others to know about my life, and enjoy this […]

  5. May 20, 2013

    […] can read about our life without a diagnosis and how it effects my marriage and enjoy this little bit of […]

  6. December 12, 2014

    […] can read about our life without a diagnosis and how it effects my marriage and enjoy this little bit of […]

  7. December 13, 2014

    […] you’re new here read about our life without a diagnosis, and how it effects my marriage, and what I want others to know about my life, and enjoy this […]

Leave a Reply

Your email address will not be published.