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.

Monday, March 4, 2013

Time traveling

If I could go back a few months in time here would be the main thing I would tell myself:

I think after our diagnosis, I became obsessed with it.  I had such a thirst to know everything I could possibly know about it.  I needed to know everything.

Then I suddenly wanted to know nothing more.  I just wanted my baby here to hold and snuggle and love on.

Now that he is here and we have settled into life and it is just that...


My blog about life with Down syndrome has simply become a blog about life. 

How boring.

It really occurred to me yesterday when I realized it had been a bit since I had posted.  No wonder -  especially if you read the lasts posts.  Nothing extraordinary. Just life.

What a wonderful thing!

I wish I could tell myself that you will not be thinking about Down syndrome every moment of every day.  You will be soo busy living life, you will barely have time to think about, silly girl!  

I think anything that is unknown is scary.  I was SO worried that so much would/could be wrong with Owen.  I let that worry steal some of the joy from my pregnancy.  I regret that.  This was probably the last time I will have the privilege to bring another life into this world (yes, probably, grandmas!) and I missed part of it worrying.  Shame on me.

This is one of my hopes: not worry away the lives of my kids. There will ALWAYS be things to worry about with them. In fact, I am sure the degree of worry will rise in direct correlation to their ages.  But life will go on regardless.  I will live in the moment with my kids, or at least try really hard to.

I would also tell myself not to give a poop about what others think/feel about all this.  I have found myself getting worked up about responses from internet people.  Random internet people that post stupid, inaccurate, outdated information. What a waste of my life's minutes.  I surely should have told myself to remember that not everyone will be as informed as me.  I must grant them grace rather than working myself into a tither about it.  More wasted life minutes.

The final thing I am perseverating currently on is what I should say to myself about talking to the people in my life about all this.  Overwhelmingly, the people in my life have been AMAZING through the past months (diagnosis to birth to life now). 

I have rarely had an "I'm sorry."
I have had no one suggest that Owen weren't the perfect little being he is. 
I have had NO ONE suggest, allude to or question why we continued our pregnancy.

This all speaks VOLUMES to me about the people in my life and those we chose to talk to about all of this.  I am so grateful for the support system we have.  Blessings beyond the ordinary for sure!

A final note...
I do apologize if I run into you somewhere with or without O and spew information about his diagnosis.  I also apologize if I say nothing about it. 

During encounters I struggle with:
  • Do I say something or not? 
  • Have they heard about it through the grapevine?
  • Have they read this blog?
  • Can they tell *something* is unique about O?
  • Did I brush my hair?  (really, this is a problem lately.  I really need to take few moments to check a mirror before I leave the house!)
So please forgive me if I go extreme one way or another.  I do not want everything to focus around DS, because it really is not a large part of our lives (right now, at least).  I also do not want to "hide" or minimize it because it is a part of our life now.

Weird, huh?

I am sure this will all sort itself out in time, but in case you see me before then, sorry!      


1 comment:

  1. I think it's so crazy how some of us are thinking the same things! Maybe it's because we talk about it on fbook. ;) All of these things have been swirling around in my mind lately. I hate that a certain post on fbook got me all worked up and ruined my day. I'm so blessed to have you women to go through these emotions and thoughts with me! By the way...good job Owen. A big 12 pounds!


I'd love to hear from you!