I used to think in my early twenties that I would either make a go of the world, let go of my black and white, good vs. bad thinking, get elbow deep into the muck of the world, or move to Vermont... read more here

Putting Down syndrome in its proper place & glimpsing our new normal…

Our 6th son at 19 weeks. He is now 33 weeks and due to enter the world late Feb. 2013.

I watched It’s a Wonderful Life twice this Christmas season, once on Christmas Eve and then on the Epiphany as we packed away our ornaments and took down our tree.  I had never watched it fully through yet I had this inexplicable yearning for it this year.  Watching George Bailey struggle with the trajectory of his life through the many circumstances thrust upon him, his glimpse into life lived without him ever being born, and the final glorious realization that all his imperfect contributions really did culminate in a wonderful life, was well cathartic.

I wrote to a friend just the other day saying pretty much the following:  “It’s funny how comfortable I am becoming telling random folks about the new baby and his Down syndrome.  When someone asks if I know what sex the baby is I share that he’s a boy and then that we also found out he has Down syndrome.  There is often that moment of sympathy, but honestly it passes me by as I feel in my heart ready to meet him as God intended.

I am prayerful that I will feel this sense of confidence, sureness, and lack of sadness, when he comes.   It’s just fascinating how already this diagnosis is becoming just a “what is”, “not a big deal”, “just a part of life”.  I pray that feeling continues.

I haven’t had any mystical visions into my past, present, or future, like George Bailey, but I do feel a ready heart for this new, beautiful, valuable life.  I can’t wait to welcome him home in celebration and begin to live, in full, our new normal.

~Lisa

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I know I was fairly fuzzy about the facts myself before we knew our family would include someone with an extra chromosome so if you are interested here is a pdf booklet for family and friends from www.downsyndromepregnancy.org that gives some great information about Down syndrome. (you can also scroll down this post for some bullet points on Down syndrome)

 

MEDICAL STATISTICS:

  • 80% of all Down syndrome babies are born to women under 35 
  • One in every 691 babies in the United States is born with Down syndrome.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 

These statistics were taken from the National Down Syndrome Society website.

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Terminology

Here is a list of terms that are no longer used when referring to a person with Ds:

  • Down syndrome child
  • Down’s/Downs baby  
  • Downsy
  • He/she suffers from Down syndrome or is afflicted by Down syndrome (It is a diagnosis not a disease).
  • Mental retardation (although medically acceptable, it’s social unacceptable)
  • And of course… retard

List of terms that are used when referring to a person with Ds:

  • A person with Down syndrome
  • cognitive disability  
  • cognitive impairment 
  • intellectual impairment  
  • intellectual disability
  • developmental delay 

These terms can be found on the National Down Syndrome Society and the National Down Syndrome Congress website.                                              

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4 Responses to Putting Down syndrome in its proper place & glimpsing our new normal…

  1. Hi Lisa, it’s been a while since we’ve talked, but I’ve been bad at reading the blogs on my list lately. I didn’t know you were pregnant again! Congratulations :) Another handsome little guy. I miss seeing your smiling face at MOPS. I am excited for you as you get ready to welcome another life and I’m refreshed by your perspective as you prepare to face a whole new chapter in parenting. Blessings to you.

  2. Thais Carvalho says:

    You’re just about to have your eternal baby. If all your other 5 sons will always be your little boys until the end, imagine your latest! Down babies are a bunch of caring and love! The true meaning of the eternal baby! <3

    • Lisa says:

      It is so interesting how people with Down syndrome have so many similar characteristics, yet truly are just their own people with likes, dislikes, etc. I’m just looking forward to meeting this little guy and finding out all his unique peculiarities. If their is anything I have learned from mothering 5 kids so far is that we are ALL so different :) Thanks for the kind words Thais!

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