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Thread: First Dr's/Midwife Appt?

  1. #21
    Posting Addict tink9702's Avatar
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    Quote Originally Posted by Heatherbella View Post
    Yes, it's like they are making pregnancy and birth a medical condition like a heart defect...not the 'natural' thing that it is. I mean, obviously there are some instances where it is required.

    My DSD sort of spends her life in a fog. She has been diagnosed with Autism although it's likely because of the genetic condition but it manifests similar to Autism. She can't talk and now that she's 15 she likely never will. She will never call DH 'daddy' or tell him she loves him. She can't feed herself, let alone get food for herself. She drinks from a sippy cup. She is not toilet trained and wears adult diapers. She will never grow up and she will never leave home. She had many different medical issues as a child and was in and out of Children's hospital for things like muscle biopsies and multiple bouts of pneumonia. While DH obviously loves his daughter, they has been through a lot emotionally. Even when our DD makes a milestone, it is bittersweet as it reminds him of what DSD will never do.

    The one solace I have with DSD is she doesn't know she's different. There are so many kids in the world with physical disabilities who are fine mentally. Those kids know they are different and it can often be emotionally hard on them. DSD doesn't have the mental capacity to know she is different, so she seems at peace with her life.

    Anyways, I think it's one of those "until you've walked in someone else's shoes" sort of situation.
    Exactly on the first point.

    I'm sorry about your DSD. That can't be easy for you or your DH. I'd imagine the medical visits and the not feeding herself are particuarily difficult to cope with. How does Kennedy relate to her step sister?
    ~~Mel

    Ethan - June 21, 2009
    Olivia - December 5, 2010
    5w3d - October/November 2012

    My Ovulation Chart

  2. #22
    Posting Addict Heatherbella's Avatar
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    Quote Originally Posted by tink9702 View Post
    How does Kennedy relate to her step sister?
    Kennedy has already taken on a bit of a 'big sister' role. Because DSD has always been that way, K is used to it I guess. DSD was with her mom for a couple weeks recently and when she came back K went up to her and kept saying 'Hi' to her. DH said it was cute...almost like K forgot DSD couldn't talk or something. DSD throws her sippy cup when she's done drinking, and K will hear it crash to the floor now and go retrieve it and either give it back (if there is milk in it) or give it to us. It's funny. DSD pretty much watches TV her whole waking day if she isn't out for a walk or a car ride (she likes the car), so K will also help put a show on for DSD when her show ends. 2.5 years old and she's already caring for her 15 year old sister. It's sweet to see, but still a burden on her wee self.
    Last edited by Heatherbella; 10-12-2012 at 10:15 AM.
    Heather, 37

    Kennedy - b. 01.26.10 after 15 cycles of TTC
    Marshall - b. 06.17.13 after 3 cycles of TTC



  3. #23
    Posting Addict tink9702's Avatar
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    awww, Not a burden if you don't push her towards it, just a sweet little girl wanting to help out! She's going to be a great big sister to the baby too!
    ~~Mel

    Ethan - June 21, 2009
    Olivia - December 5, 2010
    5w3d - October/November 2012

    My Ovulation Chart

  4. #24
    Posting Addict Heatherbella's Avatar
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    Quote Originally Posted by tink9702 View Post
    awww, Not a burden if you don't push her towards it, just a sweet little girl wanting to help out! She's going to be a great big sister to the baby too!
    Yes, I guess that's true. When we found out I was pg with DD my DH said "Now there will be someone to look after DSD when I'm gone". It's a real fear for parents of special needs kids. Who will care for them when you're gone? I asked him not to put that on DD and he agreed that it would never be a spoken thing.

    DSD also has two sisters on her mom's side. One is older than her (1 and the other is younger (12-ish maybe?). The truth is that they don't really know DSD's life expectancy. There aren't many people around with her condition. Ok, they exist but not many older ones who are diagnosed. The condition couldn't really be diagnosed prior to the advent of genetic testing.

    This is what she has: What is Phelan-McDermid Syndrome?
    Heather, 37

    Kennedy - b. 01.26.10 after 15 cycles of TTC
    Marshall - b. 06.17.13 after 3 cycles of TTC



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