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Eyes Not Opened

Posted Feb 14 2013 3:10pm
I hate when I'm following someone's adoption via blog and they hit the grand finale...and then don't post a long and descriptive narrative about it. If you're like me, you may want to stop reading now.

We did have the adoption ceremony in Kragujevac on Monday, February 11. Bogdan Nikolai Lakes is now permanently and completely ours! It was a small and informal, but heartfelt ceremony and I enjoyed it even though I was quite ill. Then there was some paper chasing, use of a Turkish toilet, more paper chasing, a croissant with chocolate filling that was amazing even with a fever, more paper chasing, and lots of driving. Whew!

We made the trek with our court authorized interpreter, a woman in her early fifties, I would guess. Since we were squeezed like sardines in the back of a tiny European car, we made small talk and I discovered that she was beyond fascinated with the size of our family. Baffled, would be a better word, actually. She asked a lot of questions and finally blurted out, "How do you do all that work yourself?!? My husband helps me a little, but with three kids, I cannot keep up." Ah. I explained that neither of us does "all the work." Our kids are taught to work, too.

She launched into her tales of woe about her eldest son who won't even make his bed and his room is a mess, plus he's disrespectful to her when she tries to enforce rules. Sympathizing, I asked her how old he is.

"Thirty-eight."

Oh my. 

He doesn't have a job because, as an artist, it's difficult to find work so he lives with them and she gives him money for necessities. His girlfriend lives in another country, although they Skype daily, that relationship isn't really going anywhere, etc. She's clearly worried about him and she, even more clearly, loves him.

I tell you this, not to cast aspersions on her parenting or his immaturity, but because of the conversation on the way home.

She began to question me on the return trip about Down syndrome. "Didn't you have any prenatal testing? It was okay that you did not have a healthy baby? You were willing to just accept that? Doesn't he take up so much time? Are you bringing him this other one to entertain him?" Etc.

I gave her well-rehearsed answers that I've repeated over the years and she was trying to understand. As we moved into "functionality" and the future of the boys, I began to see what was really going on.

I had been telling her about just turned four-year-old Eon and she asked if his case was mild. I informed her that he has an extra chromosome in every cell of his body. You can't get more severe than that. But, I told her about how much he is part of the team at home. He clears his spot after meals, puts dirty clothes in the hamper, helps Daddy with the dishes, and picks up his toys.

She asked me if he will ever have children. I responded that most men with Ds are sterile, but many can marry or live alone with some supports. 

She just couldn't grasp the beauty in a life with Down syndrome and kept shaking her head sadly. 

I was becoming frustrated with her because what was obvious to me, was completely lost on her. 


Most people are afraid of Down syndrome because they are worried that: 
  • Their child will live with them forever - check - her son still lives with her.
  • They will have to provide for them into adulthood - check.
  • Their child won't have meaningful employment - check.
  • They will have to provide physical care for their adult child. - check.
  • Their child might miss out on the beauty of a marriage - check
  • Here is a woman who is living with a typically developed, intellectually intact adult child that is less "functional" than my 4-year-old son with Down syndrome, and she can't see it!

    She is already living the life which most people fear when they think of Down syndrome, still clearly loves her son, yet, because my boys may need assistance as adults, she cannot understand how I adore them.

    Because her eyes aren't opened. 

    Mine didn't used to be, either. I accepted and valued people with disabilities. I even hoped to adopt a child with Ds, someday (check!). But, even after Eon was born, I realized that I was spending a lot of energy listing for people all the things he was going to be able to DO.
    I, too, placed inherent value in functionality. Underneath all of my posturing, I held a belief, unknown even to myself, that people are valuable for what they can do.
    It is a lie.
    During the adoption ceremony, the lawyer commended us on seeing value in Bogdon's life. She commented on what a joyous child he is and how easy he is to love. I agreed with her. But what I wanted to say was, "Even if all he could do was sit in a corner and drool, he would still have value; he would still have purpose; he would still have worth!" 
    (And yes, there are  thousands of orphans out there who, mostly because of severe neglect and malnourishment, can only lay in a crib and drool... and they have worth simply because they are here...fighters, all of them. )

    I am certain that there are numerous things to which my eyes have not yet opened. God is not finished with me yet. It is only by His mercy and grace that I can see as much as I do. I pray that He will continue to remove the scales, both from my eyes...and hers.

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