Question: My curiosity about you and Verity was about the fact that she was your tenth child. Did it affect you as much as if she had been your first?
Answer: You may have already read my very first, raw post about finding out that Verity had Down syndrome, and what the pain, for me, was all about. All my pain was centered on knowing that others would look on my tiny, precious baby girl and see her life as less valuable, less worth getting to know or knowing, see her as ugly, dumb, a disappointment, a hardship, etc, etc. As the mommy, I could hardly stand the intense pain this caused inside me.
The edge of that pain gradually subsided as I listened to the parents who had completely accepted the Down syndrome diagnosis their child had been given. I saw the joy that radiated from them as they described life with their child. I believe firmly in fully and joyfully accepting what God does, even if it takes me a long time to get there.
After Verity was born, I was still on a journey of acceptance, and there were times I still felt the pain of knowing how others were seeing my beloved baby.
And then, when she was four months old, what happened on the inside of me as I watched the Serbia video was totally transforming of my whole perspective. Those other feelings have never come back. In some ways it is as if I am a totally different person now than I was three years ago, as if I had been struck by heart-altering lightning. I always am very emotional–sometimes embarrassingly so!–when I try to talk about anything that is of very great significance and very close to my heart (especially now that I am dealing with the hormones of pregnancy). But all the pain feelings, for me, are now for the real, living, precious human lives who are so totally disvalued because of their special needs that they are deliberately thrown away, neglected, hurt, and unloved. Unchosen by even those who love Jesus, like Chad, and Brandi, and others are still unchosen. This gives me intense pain I cannot describe.
If I had the chance to take Verity’s Down syndrome away, I wouldn’t do it, because it would mean she was a different person and not Verity anymore. My acceptance of her goes all the way down inside me to the very roots. I believe God designed her to be exactly who she is, and the superficial differences we humans think so much of don’t have the significance to God that they do to us.
I think having many children before Verity came helped me by clearly demonstrating that each child has struggles to overcome in different areas, not all of them so obvious as Verity’s struggles. I don’t automatically see struggles as bad things in and of themselves, or expect not to have them. I know my heavenly Father has lovingly hand-chosen my own struggles for me for His good purposes, even if they cause terrible pain and confusion, as in broken relationships. It’s those struggles that He will use like tools to form my character into the character of Christ if I do not reject them.
Before I went to the eighteen week ultrasound for the baby boy I’m carrying, I picked Verity up from her nap and snuggled into her sweet softness, feeling her arms around my neck and her tender kisses, and was overcome with emotion as I realized–I would be overjoyed to learn that we were going to be gifted another baby with Down syndrome. It would have added complications to life, but we already know that God has all that in hand and will help us. (My two older girls had been telling me that we already had two girls with Down syndrome, and now we need a boy with Down syndrome!)
I understand that not everyone agrees with this perspective, and it may even shock some people, but for what it’s worth, that’s the best description of where I am on the Down syndrome journey right now. I have not felt pain because of Verity’s Down syndrome or differentness since watching that Serbia video, even when others make it obvious that they’re seeing her on a surface level, comparing her with children who don’t have Down syndrome, and not valuing her for the funny, sweet, spunky, determined, different little person she is and for the obstacles she constantly faces and overcomes. They are the ones who have the flawed perspective and are the poorer for it, and I feel sorry for what they are missing out on in life.
To an even greater degree, when I am out in public with Katie among strangers who have no idea of her history, I already know that nearly everyone will see her as odd and even embarrassing and will avoid direct eye contact with us and pretend they aren’t curious about her issues. How differently we see her because we understand the inside of the story.
I guess I am more and more at peace living in that conjunction between the knowledge of the inner reality of the privileged position we are in, and the misunderstanding so easily caused by outward appearances. Having people put us on a pedestal and think we are heroes, or on the other hand, having some feel sorry for us or be judgmental or get offended with us over things they don’t understand about our family’s life (that they think they do understand)—all these are not based on an understanding of the real reality. I have learned that misunderstanding is going to happen sometimes. Anyway, sometimes I am the one doing the misunderstanding.
For me, the journey with special needs has been similar to learning to be a Jesus-follower. There too, we are in the world but not of the world. Sometimes we will be misunderstood by those who are judging us according to their own preferred set of man-made rules.
And there too, in the midst of the obvious struggles of life, we can have inner joy, and a peace that passes understanding.