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.

Sunday, March 10, 2013

Fragile...Handle with care

I knew life was a roller coaster.  It has been a wild ride, especially since having children.  But the past few months have also had their share of high highs and low lows. 

This weekend was one of "those" times. I was really a hot mess. Really.

My amazing in-laws took the three older monkeys on vacation to their house.  So we had a long weekend to ourselves.  I had a few things planned, but not much because I really just wanted to relax (if that is possible with a baby in the house!).  Shortly after the kids left, I knew it was going to be an interesting weekend.  

I feel awful that my poor husband had to be around me for our "relaxing" weekend.  I was so grateful my BFF changed lunch plans to a pedicure because I could not stand the thought of eating.  And, if anyone saw me out and about, please accept my apologies for being a crab. 

The kids were not out of the house for very long before I found myself cradling Owen after a bottle and sobbing.

Whoa. Silence really can be deafening.

It became clear to me that although I am functioning at a pretty decent level, everything that has transpired in the past months really is still quite raw.  My emotions are much closer to the surface than I anticipated and this weekend was my turn to tend to my heart.

I wasn't quite sure at first what my tears were for.  After some reflecting, though, I believe it really is about the uncertainty of what is to come.  There are so many unkowns of what lay ahead.  So many decisions that will need to be made and things to be tended to.

I do NOT want to screw this up. 

Parenting feels like a bit of a science experiment on a regular day, so this journey feels like we are at the next level and I do NOT want to screw this up.

I am struggling with the fact that so many people we have talked with (medically speaking) just expect some of the doom and gloom all the time. "Our" kids, it seems, are often over diagnosed or under diagnosed.  The stories I am hearing from moms dealing with medical concerns and their little ones lately are awful.


Some doctors chalk everything up to that pesky extra 21st chromosome and refuse to take moms seriously. 

Some doctors assume all of "these" kids have reflux.  Or hearing loss.  Or vision problems.  Or sleep apnea.  Or heart issues. Or....I'm sure you see my point.

This frustrates the heck out me.  My kid is my kid.  He has Down syndrome, but that it just one piece of the puzzle.  I am so grateful to have a pediatrician that has, so far, been great.  She listens, she looks at the big picture, she asks good questions. I appreciate that more than she knows.

I also feel like there is a fine line in life between proactive and reactive and I am struggling with this, too. 

I am quite surprised at the number of therapies and such that people start at incredibly young ages.  It is overwhelming for me to think about.  And lots of what I have read of families with older kids freaks me out.  The scheduling alone is enough to send me into a tailspin.   

A woman I met the other day talked about starting therapies at 2 weeks.  First I was thinking was "What the hell can you be doing with a 2 week old?" Then my thoughts turned to, "Crap.  He may already be weeks behind." 

It all just doesn't feel right for us.

Then I think back to the conversation B and I had about all this.  We decided we would just take things as they come and support O with what he needs to be successful  Meet the guy where he is and work to grow him as far as possible. And, although I think being proactive is a great strategy, I also think about kids.  O is not any different in fact that he *could* have potential for several roadblocks in the coming years. BUT, it will really all depend on his needs and abilities. We will get him every resource under the sun to help him out, exactly what we would do for any of our other children.
My gut is just speaking to me differently, sometimes, and I am not sure if it is just a 4th child thing or a denial thing or what exactly. And I hoping to navigate the proactive/reactive path very thoughtfully.

What does this rambling boil down to??

I do not want to screw this up. 

Nothing would break my heart more to find out in a few years time that if I had done X, kid Y would have had a better shot in life.  Not just for Owen, that goes for any of my kids. But with Owen I feel like there will be many more factors to consider.  The variables greater.

Or he could be just like any other kid.  And that is my greatest hope.

I know many of mom DS mom friends may read this and I never want to judge another family, especially considering what all face in life.  So please, do not read that I am judging your choices at all!  We are all walking this crazy path and I like to hear how we are all doing it.


  1. I hear you sister. My weekend has been rough. I'm going to write about it tomorrow when I'm hopefully feeling less fragile.

  2. Great post, totally agree with you. I am feeling pretty overwhelmed with it all right now, hugs to you!

  3. I am really feeling similar feelings lately. Too many potential crossroads ahead of me and the fear of making wrong choices sits on me daily. I feel lucky that we all have each other though. I'm pretty sure it is gong to be a fabulous ride. :)


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