Friday, July 6, 2012

Faith and Down Syndrome

Alright, get ready for a bit of rambling because this weeks Summer Disability blog hop topic is:

What is “faith”? How does it affect the way in which I perceive and integrate Down syndrome within my life?

I guess I might as well start with some basics.  Yes, I believe in God.  Yes, I pray.  Yes, I go to church.  (A fairly conservative church where I don't agree with everything, but that's a whole different topic) 

Do I have faith that everything happens for a reason?  Um, well...yes...maybe...I don't know.

My problem here starts with Brian's accident.  Yes, it happened.  I know how it happened.  I just don't know why it had to happen.  And I guess that's where faith comes in.  Believing in something even when we don't understand.  I have to believe that God could have stopped Brian's accident, could have saved his life and chose not to.  And that's hard to do.

Brian's accident taught me to cherish what is important to me, not to dwell on petty things, to always end encounters with kind words.  Important lessons yes, but important enough to learn at the cost of someone's life?

And then there is Claire and Down syndrome.  

I believe that Claire is *exactly* who she is meant to be, and that she is supposed to be mine.  Of this I have no doubt.  

The day I learned she might have Down syndrome was the day I first felt her move inside of me.  I know that her quickening happened for a reason that day.  In an instant she went from being this idea of a child (obviously I knew I was pregnant, knew I was going to have a child, but just didn't really get it), to being my child.  The child I would fight for.  The child I wanted no matter what.

Where the doubt creeps in is when people say God chose her for me.  Really?  God purposely gave me, someone who wasn't sure they even wanted to have kids, a child that could be living with me for the rest of my life.  I am incredibly impatient, and a huge procrastinator.  And now I have a child that needs extra help and time devoted to her.  Okay, so maybe Down syndrome is supposed to teach me to slow down.  Maybe there really is a lesson in everything, and everything happens for a reason.  

I guess what it all comes down to is that I just don't know.

There are times I'll read a blog post or see some scripture quoted that is so appropriate it seems to be meant just for me.  God must be speaking to me through others.  And there are other times that the questions, the whys, are just so overwhelming that nothing makes sense.

I know that faith is an evolution, a journey if  you will.  I just thought by now I would know, really know, exactly what I believe, and I just don't.


  1. I think it's okay to not know why...just because we're Christian folk who believe in God doesn't automatically make us have faith that blindly accepts everything without my opinion, since I'm sure there would be plenty of people in my church who disagree...ha!
    Good post...

  2. Makes perfect sense to me :-)

  3. Oh, Melissa, I had no idea about Brian. I cried when I read that post. Of course, that's not specifically what this post is about, so I'll just say that those kinds of questions are what make more complete people of us. We learn by questionning, and if we don't learn about our faith in God or a higher being, we at least learn more about ourselves.

  4. If anyone has had their faith tested, it would be you. But yet here you are, with an open mind and heart, embracing what has been handed to you, and still believing in God. I'm not sure we ever have the answers but what I admire is that you aren't weighed down by that. You inspire me.

  5. Ohh, Melissa. I never knew.

    Sometimes I think "If only..." but there are things that if I changed would significantly alter the way my life is now. Even though I want to go back in time and make that change ... I can't imagine the ramifications. If I had my Lydia ... I wouldn't have my Lilya.

  6. I don't think any of us have to have all the answers or reasons for the why. It's a day to day stumbling that sometimes is easier than others. I can imagine that your questions and doubts are huge, and it makes perfect sense after everything that you've been through. I'm glad to be on the current journey with you. I think you're an amazing mother for Claire- I'm the same way with the impatience. Oh the irony of it all...

  7. I think it is perfectly okay to question. I think honestly, we are suppose to. As we walked that cancer floor for 8 months, there is where I had most of my questions. Most, if not all remain unanswered. I always say that I have quite the list to whip out one day when I get to where ever it is I am hopefully getting to. Somehow, at least for me, despite the questioning, I somehow manage to circle back to my faith and my core beliefs. So how could it be a bad thing?

    you story of Brian has always touched me and I thank you once again for unselfishly sharing it with us.

  8. You speak from the heart. The heart leads us where we need to go if we open to it. I am always surprised at how a cranky low grade person could have such a loving and warm child. The search for meaning is important but really isn't it okay if we never find any set answers? Thanks!

    1. Oh btw the cranky person is me - sorry to be unclear!

    2. That cranky person could be me too, but no worries, I totally knew what you meant!


Thanks for stopping by! I love to hear what is on your mind.