Wednesday, April 21, 2010

love around my neck and harsh realities

Monday, I received my DS pendant in the mail!  I don't know why this necklace means so much to me, but it does.
When Jack was 1st diagnosed, I was so overwhelmed with emotions of fear and uncertainty.  I didn't want people to notice the DS and often wondered if they did.  Then I went through a spell of needing to talk about it and just let people know.  I would let perfect strangers know, which I think was my way of dealing with the reality of the diagnosis. Down syndrome is not our life, but it is a part of it.  It is a part of Jack's life, just like therapy is a part of life, Jack's health issues are a part of life.  People who don't have children with DS or know anyone won't understand this.  Some people will say, "who cares...its' just an extra chromosome"...and honestly, sometimes I have that feeling.  But most of the time, my husband and I are faced with the struggles and joys that extra chromosome brings.  I am not going to hide our struggles or feel awkward because we have them.  Jack is our treasure.  And this necklace represents him.  Anyone can wear a pearl or diamond necklace.  But not anyone can have a necklace like this that represents and embraces differences and a beautiful life. This necklace reminds me that while our lives are different, they are also unique and beautiful and novel. So, I proudly wear my necklace.  I sort of hope that someone will notice it and ask me about it...maybe they will have a negative view of DS and it will give me opportunity to tell them about our beautiful son.  Or maybe I will run across a woman who is contemplating abortion and I can tell her the beauties of life when you have a child with DS and maybe she will then choose life instead.  And maybe those things will never happen, but I will still wear my Jack Necklace and let it dangle close to my heart...because that is where he is always.  (necklace found here:

This past weekend I was faced with a harsh reality.  Through a conversation with dear friends, I came to the realization that some people view Down syndrome as a random act of nature and that the reason that there aren't more people with DS in the world is because they are weaker and nature doesn't let them..."typical humans" are stronger and therefore dominate.  I was so shocked to learn this...I had no clue people actually thought/ believed this.  This is a very scientific way of viewing life and my friend was probably just playing devil's advocate, but it hurt.  I don't believe this. I believe that God formed Jack just the way he wanted him...I believe that Jack has purpose as does every human here on earth.  And while there is mourning over the loss of "normalcy", there is great celebration over the life of Jack.  People who think that individuals with DS are weaker and that is why nature doesn't allow them to "multiply" are ridiculous.  I look at all the things my Jack has gone through in the past year, not to mention all the things so many other children have gone through and find evidence of strength and valor.  Oh how I wish I could change how people view my son and other people with DS.  I wish I could make them see how lovely he is and how blessed we are to have him.  He is no freak of nature or accident.  His life was formed and created with great purpose and I don't care if people think I am crazy or not. DS is not a bad thing.  DS is not a curse.  It is hard and it brings some difficulty, but so does life in general.  After this conversation ended I gathered up my Jack, took him to his bed and thanked God for making him.  I told Jack that he was made this way and that God makes no mistakes.  Although the reality of that conversation was very hard and it took me a few days to be able to write this, I am glad I  now know how some of the world thinks. It will help me to love Jack more and better.  And the next time I am faced with this opinion, I will be ready...the shock will not paralyze me like it did then.  And I comforted with this:

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be (Psalm 139:13-16).

I know people will get freaked out now, because I just went religious on you, but I don't care.  This is what I believe...this is how my sweet Jack was made and HE has purpose.

This is a life with purpose...he is not suffering, nor is he weak:


  1. Girl, I'm not freaked out at all! Go "religious" all you want because that beautiful verse speaks pure truth You're right, God doesn't make mistakes. Jack isn't a coincidence. He is exactly what God wanted you to have. I’m often shocked when people reply with, “ohh, I’m sorry” when I tell them that Austin has Down syndrome. It’s almost as if they think our lives are filled with nothing but heartache. If they only knew how blessed we are. Yes, Down syndrome brings challenges…it’s merely a part of who our children are, but it doesn’t define them. Like you said, life in general brings difficulty.

    Isn’t the necklace awesome? I feel a little more “normal” for feeling so attached to mine after reading how you feel about it.

    I could say so much more….This post is so beautifully written…I really connected to it, if that even makes sense? :)

  2. Beautiful post, I love the necklace. I also love what you said about it, "his necklace reminds me that while our lives are different, they are also unique and beautiful and novel." So true.

  3. Jack is a wonderful blessing in everyone's lives who knows him, or has met him. He is even more blessed to have wonderful people as his parents. He definitely is strong and not weaker or a random act of nature. I know he will one day affect people with those beliefs and show them how much purpose he does have. He will affect so many people's lives in a positive way throughout his life- so much more than those people who believe because they are perfectly heathly and strong they will survive- isn't that weakness?

    Thanks for the post!

  4. You go all religious on us, girl! Ben & I love you, Jack, and Michael very much.

  5. Thanks for all your comments. I am so glad to have such wonderful blogging friends :)

  6. I love that verse, and it is so true! I also believe that Claire is perfect and is just the way God intended her to be. Yes, there may be challenges, but there are challenges with any child. I recently said to a friend that it was the act of having a child, not having a child with DS, that changed my life.

    I want to get one of those necklaces too, but couldn't get the contact form to work the other day...I need to try again. I'm not one to randomly tell strangers that Claire has DS, but if someone were to ask I would happily talk to them about it. I think this necklace could be a great conversation starter.