Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, October 16, 2012


So, for anyone who knows me, this will not come as much of a surprise.  But I have been reading lots lately.  I started with blogs and such and know I have read several memoirs of families of children with DS.  The first read was Bloom by Kelle Hampton.  I really liked her blog and it was interesting to hear her story more fully.  I have read parts of  Gifts and Gifts 2 and those vignettes were heartwarming as well.  Now I am reading A Good and Perfect Gift by Amy Julia Becker.  Wow.

These women have such courage to share their most intimate feelings.  I hope that I can come close in my own writings so that others may have a deeper sense of our journey.  But reading this morning during Colton's nap caused me to stop and pause and reflect and journal right away.

In the story so far, the baby has just come into their lives with a birth DS diagnosis.  Someone commented that it was good that they didn't know beforehand because then they would be preparing for DS and not for the baby.  "I prepared for a child, a family, a gift--not a condition, a syndrome, a problem."

This really struck me this morning.  I really had to reflect and think about how I was preparing.  I think I have actually struck a nice balance. I have ordered a ton of books (thank you Amazon.com) and I read online a lot at first, but now I am chilling much more.  Most of the books and pamphlets are set for reference once we need them and that is comforting to me.  And, honestly, I started looking at them and was a little freaked out.  I will take it as it comes and the books will be there as needed. 

I am really looking for information from parents who did have a prenatal diagnosis and time to prepare.  I created a poll on the DS board that I have been frequenting as to when those parents found out about the diagnosis.  Shockingly, nearly 70% were a birth diagnosis.  (This is where the data geek in me comes out...) So out of 117 families, 82 found out at or after birth.  Only 35 were prenatal.  Hmmm...just some further food for thought. This is such an interesting adventure!

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