Friday, March 22, 2013

Trisomy Awareness Month

March is Trisomy Awareness Month, and while I've been wanting to spread a little awareness, we've had a rough month.  The beginning of the month brought on a cold for Lily, Soleil, and Aria, and last week the good ole stomach bug decided to invade our house.  First, Soleil.  Then, Lily and I.  I'm praying that it stays away from Dave and Gabriel.  

I wanted to first say a big THANK YOU to anyone who donated to Pattison's.  It was so exciting watching our goal not only be met, but exceeded, knowing that every little bit helps this special cause.  From what I hear, Pattison's goal was $100,000.  They made $228,000!  The Spin-a-Thon was again amazing, and it was extra special being able to ride in it along with Rani and Autumn and some wonderful friends.

March 18 (Trisomy 18 Awareness Day) has come and gone, and I really wish I had had the energy to post something.  I spent that day (besides being sick) thinking about Lily's birth.  I thought about how it was honestly the most beautiful birth I have ever been through, despite the fear and the sadness and the worry.  I thought about how much trust I had put in God.  No, not the selfish trust I wanted to have that I hoped would allow Lily to live, but the trust that no matter what happened to Lily, I would be held in the arms of a loving Savior.  My tears would be wiped away as many times as need be by His gentle, healing hand.  And He would still be good.  I thought about how fragile the uncertainty of her birth actually was.

And then, I thought about Lily today.  How vibrant and joyful and playful and aware she is.  How an outsider might be uncomfortable with her noises or the way she holds her body sometimes or watching her vomit (which seems to be happening less, by the way).  I thought about how normal she is to us.  While I would love for her not to have Trisomy 18, well. . .she does.  There is nothing I can do about it.  With that being said, because of that, I cannot imagine her any different.  And the beauty is that she fits.  She fits into our family just the way she is.  She is no different from Rani or Autumn or Gabriel or Soleil or Aria.  Yet, without her, our dynamics would be different.  We would not be who we are. . .for better or for worse, I might add.  My parents and Dave's parents love her just as much as they do the other grandchildren.  And our friends love her, too.  She is a part of all of us.  And we are a part of her.  I believe Lily is who she is because of that love we have surrounded her with.  

She knows she belongs. 

There are people who disagree or question that statement:  the doctor who sees Trisomy 18 as incompatible with life.  The mother who just received the diagnosis of her unborn child and questions whether or not she could handle losing or even raising a child with special needs.  The general public, those who are concerned with their tax dollars spent on a child who will never contribute to society.

I understand.  I see your point.  But I have this strong belief that Lily, and children like her, are meant to be here.  Whether it is a divine reason or not, these children are here to teach us about our own vulnerabilities, to show us what joy is meant to look like, to move us to help others.  To allow us to love someone who is seemingly inferior to ourselves.  You can't give a medical explanation, nor should you put a monetary amount on any of that.

Yes.  Lily knows she belongs.  She belongs in this family, and she belongs in our world.  She knows that, and she's seeing to it that her reason for being here isn't in vain. We're helping her as much as we can along the way.

1 comment:

  1. you are so encouraging! Glad to hear the Spin-a-Thon went well and wow how amazing is it that they exceeded their goal by that much. Praise the Lord for his provisions!