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To read about the beginning of our journey, read here and here.

I keep writing about my first moment with Amelia because it was such a life-changing, defining moment. There was before and there is after. There was once a pregnant woman with a boy and girl, children whom she would refer to as “perfect.” Then there was a woman, no longer pregnant, staring into the face of a new baby, searching desperately for any familiarity, for anything to hold on to that would create feelings of love. This baby she couldn’t help but refer to as “broken,” choking over and over on the heavy word and the heavier reality. A perfect boy and girl, and a broken baby. Two rights, and a wrong.

And in the early days, that was how I consoled myself: Well, I have two amazing children; I can deal with one sub-par child. I can take my lumps: shall we accept the good from God and not the bad? I felt strong in those moments, and noble to some extent. Two out of three’s not too bad, you know.

But I knew, in time (and probably from the beginning), that it is not fair to view the third child as the mistake, as the fly in the family ointment. She’s not our consolation prize. So why? Did the God who never sleeps nod off when knitting Amelia together? A slip of his righteous right hand and oops – an extra chromosome? Or were his arms too short to save – Satan swooped in and interfered and my short-armed God just reached out hopelessly, weeping as he tried to stop his enemy and failed?

I read an article about suffering by a mother whose twin daughters had died shortly after being born with birth defects. Her disturbingly simplistic conclusion is that birth defects are just a result of the Fall: God allowed us to choose to sin, and we now bear the consequences of that first sin. She states her only hope: “For many of us who have had [sic] lost a child to birth defects or live with a child with physical problems, sometimes we can only take comfort in the hope that one day we will hold our children, free from pain and made completely whole in the presence of God.” The author no longer has her children on Earth, so it makes sense that she puts all her hope for her children in their heavenly home. But what am I supposed to say when I look into Amelia’s face, and she wants to know why she’s different? “Sorry, sweetie, your Down syndrome is a terrible consequence for sin, but don’t worry – all will be well when you die”? This clearly misses the mark. When people asked Jesus why a man was born blind, he didn’t say, “Because of the Fall… too bad about that…” No. Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” (John 9, ESV) God has a purpose in all things, even bad things that were not part of pre-fall creation.

On the other hand, I disagree with those who say that God intentionally creates children with special needs to endure pain and suffering, to be little “angels” to the rest of us. So what’s the answer? Why does my daughter have Down syndrome? Why does she have a severe, congenital heart defect?

My first mistake was in thinking my other children are perfect. They may look perfect to me, but I know them well enough to know that they are, in fact, broken. They are sinful and left crushed by the Fall. Their brokenness requires a Savior. Amelia’s physical brokenness is an outward manifestation of the Fall, but I along with my “perfect” children are more spiritually broken than any physical disability could display.

Yes, Amelia’s physical issues are a result of the Fall. I don’t believe that she will have Down syndrome in heaven. BUT, and this has been so crucial to my processing of this situation, God allowed her to have Down syndrome for our good and his glory. Amelia having Down syndrome was God’s absolute, best plan for her life and for the lives of those who will be in relationship with her. Nothing, absolutely nothing happens in this world that is not within God’s glorious and holy will. God allowed his Son to be killed, the worst possible sin ever to be committed. If he controlled and wielded that sin to accomplish the most beautiful sacrifice and atonement (and he did), then any other result of the Fall can be seen as being allowed and used well by our heavenly Father. That includes my daughter’s difficulties.

Yes, Amelia will be physically and spiritually whole in Heaven, as we all will be. But our physical and emotional difficulties in life are a gift to us from our Creator who knows our souls better than we know them ourselves. God will use the difficulties to enrich our joy. I would not choose for Amelia to have a disability, but I can honestly thank God (though sometimes through tears) for the Down syndrome because I know that it is a loving and gracious gift. I’m grateful that, in this case, the challenges came to us in an adorable, kissable little package – I pray we will parent Amelia with the same grace and love that is daily given to us by our great God!

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