Tuesday, January 17, 2012

Ramblings about Down syndrome ...

So many thoughts running through my head the last couple of days as Down syndrome keeps popping up in unexpected places.  When I started this blog 5 years ago, it was to share information about Eliana.  She was born with two holes in her heart that were going to need repair.  We also found out at her birth that she has Down syndrome.  I wanted to keep family and friends updated on her progress and medical status and a blog seemed to be the fastest and easiest way to do that.

What I hadn't expected when I started, was that this would be a place to share the joys of knowing and loving someone with Down syndrome.  Like most people, I had heard the negatives and to be honest it was scary and overwhelming at first.  Even though I already knew and loved someone with Ds, I still wasn't sure that *I* could do this.  God taught me so much during that first scary, tumultuous year.  He was so good and so faithful.  I am so thankful for those lessons.  I'm also really thankful to have a little girl with designer genes.  God continues to teach all of us through her.  She has opened our eyes to so many things.  My blog now isn't just focused on Eliana or Down syndrome, but about the path of life our family is walking - our faith, our schooling, family, friends and more.

As Eliana grew and became stronger and more health, the focus on my blog shifted.  I had come to realize that sharing about the everyday life of our family was what I wanted to do.  A part of that was the joy of having a child with Down syndrome.  Most people can understand the delights of children - and ALL of mine are amazing gifts and blessings!  I have hoped that perhaps by writing about our life that others might be a little less scared - and perhaps even excited - about having a child with Down syndrome themselves.  It has been a blessing to me to have others talk with me about her - and to see the joy that she brings others.  I'm thankful for these opportunities to share more about Eliana and also God's amazing work!

Yesterday I had two people talk with me about Down syndrome.  One is a sweet friend who is pregnant and her ultrasound showed a soft marker for Ds.  I loved her peaceful reply as she is prepared for whatever lies ahead.  She knows that this baby is a gift from God and it shows in the peace He has given her.  The other gal I talked with was asking for a friend (who also had a soft marker in an ultrasound for Ds).  I encouraged her that having a child with Ds was a blessing.  I offered to talk with her, email her, meet her, let her meet Eliana and our family.  I so want others to walk into this with more peace and less fear if at all possible.   As we were talking, Eliana was playing near us.  She was taken with Eliana and I know this will help as she talks with her friend.  Both give me more opportunities to pray for all that God is doing and will do in the lives of these families.

News was shared in recent postings from other Moms of children with Ds that popular Christian artist Aaron Shust and his wife have just had a little boy with Down syndrome.  The Dad write a beautiful blog post about his son - and his belief in the goodness of God.  I love the words to his song that are included in that post.  So much more meaning to those words now.  I know that this baby will be a blessing and hope that they can rest in that too.  I wish I had truly understood this when Eliana was a baby.  It was something that God had to teach me.  It seems so silly to say that now, but I had to learn it for myself.

And then there are times when very positive things are posted, like this story about a young model with Down syndrome.    Love it!  Click on the link to read it yourself.  You may have seen him in a recent Target ad.  I did!   Model inspires others  Really, this is what it is all about - recognizing that children/people with Down syndrome are people - with gifts and talents to offer.

My heart continues to be heavy for the many beautiful children living abroad in orphanages and institutions due to have an extra chromosome.  I'm at a place where I'm not sure what God wants me to do with this burden.  I continue to pray, give money and share about these children with others.  It seems so little sometimes.

Look at these beautiful children with so much potential.  They need a family.

So many beautiful children!  Take a look.  Here.  Is your heart drawing you to help?

I feel like I've been rambling.  My thoughts have been all over on this topic.  I'm thankful for so many supportive people in my life.  I'm richly blessed with a wonderful family and awesome friends.  I'm truly thankful for the One who gave me life - Jesus.