Friday, June 26, 2009

Spooky Hens

Catchy title, eh? That's what a friend of mine calls women who seem so "spiritual" they are barely here. Recently, I unwittingly sought out a spooky hen. Ever since giving birth to Eon, people in our circle have been encouraging me to call this woman since her daughter has Down syndrome, too. I was unready to cold call a woman that I'd never spoken to, until a few weeks ago when heart surgery was looming. I knew that this woman's child had undergone heart surgery and thought I'd drop her a line.

Admittedly, my expectations were probably a bit high. I thought we'd immediately connect over shared experience and brag on our children, discuss doctors and therapists, and reminesce about the moment of diagnosis. A full 90 seconds into the conversation and I knew I'd made a big mistake. She seemed so intent on discussing angel visitations and heavenly things that she made little earthly sense.

Throughout the conversation, it became abundantly clear that she really had very little knowledge of Down syndrome, which was very surprising to me given that her daughter is four years old. Most of the moms I've connected with have become experts on the subject by the time their kids are a few weeks old.

Unfortunately, at the close of the call, the reason behind the ignorance was shockenly apparent. She informed me that her daughter is being healed of Down syndrome, that even the physical therapist has noticed that she has less and less features of the diagnosis. And then she assured me that my son will be healed as well.

I was speechless. I so wish that I had stuck up for him. I wish that I would've told her that Eon is perfect, that he was created in the image of an Almighty God, that Down syndrome is a wonderful part of who he is. Instead, I mumbled something about needing to attend to my children and hung up.

In telling this story to other Ds moms, I've had some think that my point is that healing of Ds is impossible because a third copy of the 21st chromosome is in every cell of his body. Not true! I know that God could very well eliminate that extra copy if He chose to. He's God. My point is: Why would he want to? As Psalm 139 points out, God formed Simeon in my womb. His days were set before him before one of them came to be. God created him for a purpose and for His pleasure. I am blessed to be a part of it.

I'm sad for this woman's daughter. The best thing we can do for any of our children is to embrace them fully. I wonder what kind of message she is sending to her by insisting that she needs to be healed of the building blocks that shape who she is. Another friend of mine defended her by saying, "Well, she has a lot of faith." Does she? Is that what faith is - claiming that reality is different than it actually is? I don't think so and I'm pretty sure scripture backs me up. I'll get to that in a future post.


  1. Wow. It took me a couple of minutes to respond to this post. Not because of this woman's "faith," or what she's believing in. If this is truly what she believes as being a "word" from God spoken into her life, then she needs confirmation. I've been where this woman is and as a result I feel for her. However, if this is not from God - she's in a dangerous place. I could not accept my Gaby's diagnosis. I still pray for healing. However, my husband constantly reminds me of what God spoke to him the day we were told she had DS. "Do not despise her design." Tara you were right to post this, b/c there's still many of us who are trying to change a divine design.

    I, like you, do believe in the healing of DS, if it's God's choice. I do believe in miracles, but perfectly understand and appreciate what you have posted. I am sorry that at times we who consider ourselves "spiritual" are no earthly good to the hurting or maybe someone who just needs some advice.

    It took courage to post this. Thank you.

  2. I too believe that God can do anything but like you said, why would he want to for lack of a better word "heal" someone from having DS. Because I believe he sees our children as perfect, they may not be perfect in the world's eyes but he sees differently than we do. I remember I was talking to a friend right after I had Bennett and how people didn't always understand what an amnio was or that it was 99% accurate. She told me her husband was one of these people and said "I bet Adrienne has the baby and he comes out perfect and there's nothing wrong with him" and then she said to me "I told him no, that amnio's were not wrong" I'm thinking, do you realiaze what you just said- you just agreed with your husband basically, that if he does have DS he won't be perfect- so I said, well we think he's perfect but she didn't catch on or say sorry or say oh I know or anything like that.

    Having Bennett has really helped me see a new perfect. Kind of how God sees his children. And Bennett or Eon don't even have any real physical defects so I think of children that do and I can now see how they are just as perfect in God's eyes- he sees their heart not the outward appearance that we see. It's too bad that this woman can't love her daughter for her heart and the joy that I'm sure she brings, she just looks at her delays or outward appearance but God doesn't care if she's a little different.

  3. WOW!! You know I had a very close family member tell me "there is nothing wrong with that baby, and if there is God will heal him from it". I was soooo angered at that time. First of this family member was partically right; THERE IS NOTHING WRONG WITH JOSEPH and secondly if God chose to rearrange Joseph's DNA in his sleep tonight then so be it. Do I believe God is capable of rearranging Joseph's DNA? Sure do. But I don't believe it is in His plan. Joseph is "fearfully and WONDERFULLY made". He is not a slip up in God's plan. He is perfect in every way as God has planned for him to be. It is a shame some miss this, I am a bit heartbroken for this little girl.

  4. I feel like being 'healed' or 'cured' of Down syndrome is the same as requesting God to change the gender of your child from a boy to girl or vice versa. Sure he is omnipotent and can perform any miracle but why would He grant such a desire? Down syndrome is a part of our children just as much as being a boy or girl is.

  5. Thanks for your comment Tara,we haven't connected yet with other parents of kids with Ds. We met with a doctor(surgeon, but he also does counselling) in our church - we wanted to chat about processing our situation etc. Anyway one of the questions we asked was "how do we pray?" He said that he thought praying for healing would be unwise but we should pray that the physical abnormalities and mental disabilities would be minimal and just like before we knew that Ella had Ds for sure, know that God has dominion over her body but does allow these sicknesses to occur to bring glory to him. I can't remember the passage but Jesus explains of a sick man that is healed "it is not the sin of this man, or of his father before him, but rather that God's glory would be revealed."

  6. I am sorry you saw my post, I never thought anyone who had a Down syndrome child might read my post how ever since you did let me assure you that all Down's children are the same and your child is special.
    I would like to be able to tell you what Debbie's life ment to our family but my ability to express my self is limited.
    My sister wrote a piece on her blog on debbie's birthday and I would like for you to read it if I can manage to give you the link. Fleta's has more ability in this field than I do.
    If I fail in this task let me assure you that Debbie was the greatest gift God gave our family.
    God bless you.

  7. see I ment to say all Down's children are not the same and your child's abilities will not be as Debbie's was but as usual I said one thing and ment another. I hope you will read my sister's post.

  8. So I googled the link I gave you and it worked. The title that came up was The fifth sister.