DS Awareness Day#3: a baby is born…with Down syndrome….oh

Your friend, sister, neighbor, acquaintance just had a baby! YAY! How exciting!

Oh…..and the baby has Down syndrome? OH!

Often hearing the news of a pre-natal or post-natal diagnosis of Down syndrome, or any other form of disability, can leave us speechless.  Not knowing what to say means we say nothing at all.

I have been on both the giving end and receiving end of this silence. It hurts. It hurt to not know what to say to someone, and feeling guilty about creating an empty space that got bigger. It hurt more to feel a sense of isolation watching those around me silently step back.

Simple tips – 

  1. Celebrate a life!  
    • Every mom wants to hear, “CONGRATULATIONS – you are having/had a baby!” , “He/she is beautiful!”
    • A congratulations card, not a condolences card, will be cherished.
      • Peter’s cards are in a baby box with all momentos collected along the way, just like our other kids
  2. Say something, something kind
    • There are going to be a lot of mixed emotions and maybe some fear. Not feeling alone on this journey is so comforting.
    • Don’t start with, “I am so sorry…”, instead start where you would with any other baby. Things like, “How big was she?”, “Can I see a picture of him?”.
  3. Listen
    • Don’t assume someone’s feelings. Instead ask, “How are you doing?”, and let the conversation go from there.
      • I met a Special Education teacher in Peru with a daughter with Down syndrome. She shared that finding out her daughter and Down syndrome was the happiest day of her life because she had, for years, prayed to be blessed with a child with Down syndrome.
  4. Be realistic 
    • Being overly optimistic can feel insincere, especially if there are health issues.
    • Encourage and support. A simple “I can’t imagine how you are feeling, but I am here for you”.
      • I will for ever be grateful to the many families who stepped in to help with our family and meals, allowing me to stay in the hospital with Peter.

We received a pre-natal diagnosis with Peter. While the vast majority of response was silence, the words we did get ran the full spectrum. One on end was “When are you having an abortion?”, “Not having an abortion is selfish”, and “I am so sorry, you must be completely devastated”. On the other end was “Congratulations! You are having another boy!”, “I am so excited for your family, you will be in my prayers”, and “I imagine this feels scary, but I believe your family is very blessed”.

Every parent and family will feel different, and their feelings may swing drastically from one day to the next. Reality is they are, in some way, grieving the loss of the baby they thought they were having. They are embarking on an unexpected journey.

Encourage. Don’t judge. Be kind. 

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“Week 4 in this hospital, what must I do to get outta here?!”, Peter pondered.

Comment below on words of encouragement you have received when having a baby, and you will be added to our drawing for three awesome gift packages on 3/21: World Down Syndrome Day!

 

 

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2 thoughts on “DS Awareness Day#3: a baby is born…with Down syndrome….oh

  1. Thank you for sharing this, I have to admit I don’t know what to say. The link you shared was very insiteful, thank you. I don’t want to be silent😊

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