The Hailey Herald

The Hailey Herald

Thursday, October 20, 2011

31 for 21: Day 21 - Faith and DS

Today is Thursday, so I've agreed to blog on the same topic as others who have committed to the 31 for 21 challenge.  Today's topic...Faith and Down syndrome.

I will be honest.  There have been a few times through my life when I have really questioned God...I've asked "why", "why me"...I've even been mad at God.  My mom passed away when I was 5 years old.  I don't remember it much but I do remember questioning things as I got older.  During different milestones in my life, I was mad that she was "taken away" from me.  My dad remarried and I was fortunate to have a fabulous step-mom (I've called her Mom from day 1).  I was upset that I couldn't have questions like where did I get this habit, where did I get my horrible singing voice from answered?  I felt cheated.

Fast-forwarded 12 years, I was in a serious relationship for a year in high school and the young man died in a single car accident.  I questioned God again...I was mad.  I was older so I felt the pain more.  I had more anger.  I felt cheated again.

That brings us to almost 20 years later.  My sweet precious little girl was born.  She was taken to the NICU shortly after birth because she was turning blue.  It seemed like so much time had passed.  The doctor and my husband returned to "break the news" to me.  My daughter has Down syndrome and could possibly have a heart defect.  That night was rough.  I did a lot of talking to God that night.  I questioned him..."why me", "why Hailey", "why not the woman in the room next to me", "how can you do this to any child"?  I cried.  I was hurt, I was mad.  Then I started bargaining with God.  "If you make sure Hailey doesn't have DS, I'll volunteer more, I'll go to church more, I'll donate to the church more, etc.  At that moment, I would have done anything to change the outcome of her genetic testing.

A few days later, after the shock wore off, I dropped an email to a former priest from when I was growing up.  He knows me and my family and has for over 20 years.  I pulled no punches in my email.  I listed every question and every angry thought I had.  We emailed back and forth over the next few weeks.  I found peace in every response I received.  He made me realize it is okay to question God.  I never stopped believing in God.  My faith remained strong.

Once I was able to spend more time with Hailey, hold her, feed her, stare at her...I realized how grateful I was that God gave me this beautiful child to care for, love and learn from.  I truly believe that God chose us for a reason.  I have learned a lot about myself, as a person and as a mom.  I know I've already learned many valuable life lessons since Hailey was born.  I know that I have many more to learn from her.   I believe Hailey has a lot to teach others around her.  I feel privileged and honored that God entrusted us with Hailey (and also our boys).

My faith in God has not waivered through this adventure.  If anything, it has gotten stronger.  I do get annoyed every now and then and say "Seriously, God...don't children with DS have enough?".  "Did you have to have soooo much in their little bodies affected by that extra chromosome?"

My priest said shortly after Hailey was born, "Individuals with Down syndrome seem to view the world the way God intended it to be seen."  I think this is true.  I also believe, having a person with Down syndrome in your life, helps you to view the world in a different light.  I believe my daughter is going to WOW everyone...she is going to do great things.

I tried desperately to capture a decent pic of Hailey this afternoon with a pumpkin but she does this new thing where she grins from ear to ear and squints her is so annoying when trying to get a decent pic!  See what I mean!

Then all she wanted to do was eat the pumpkin!

I got a couple decent ones...guess I will keep trying :-)


  1. Those pictures are priceless! I love seeing her squinting shut. Beautiful post!

  2. Love the pictures =) This is a beautifully written post- I remember going through the same questioning as well.

  3. Great post - and great pics - I love the squinty face ;)

  4. love the pumpkin pictures!! stopping over from the blog hop :)

  5. Love the Halloween pics, she is adorable!
    Blog hopping over fr Austria :)

    Christina (Prince Vince)

  6. Beautiful post. I think the thing that I had to realize with both of my children (in addition to my son with Ds, my older daughter has cerebral palsy) is that "Why me?" is the wrong question. It's not about me at all, which of course you know now, too.

    Visiting via the blog hop!


  7. cute cute cute! Hopping by, and loved the sunshine from the pretty smile! :o)