It isn't all the time and often it catches me unaware. It may be a tilt of the head or a profile view. It happens most in the early morning and evenings at bedtime - those first moments of shaking off the sleepy night and the droopy eyes after a busy day. When he is upset and crying it becomes so clear even though in the moment to moment of life I forget. My heart breaks. Anger rises up as I struggle not to turn away from seeing it - the almond shaped eyes with heavy bags, the lax jaw allowing a too large tongue to peek between his sweet lips, the ears that are just a little too small and slightly too low. These are physical reminders that all is not "right" within the very things that make this child I love who he is.
I hate it.
Not every parent of a special needs child feels this way. We all grieve and process, love and accept in different ways. This is the story of my struggle. In fact, those differences is what makes this harder. From the moment of his diagnosis I've been told: "It doesn't matter. He is perfect." "He is exactly how God created him." "He is no different from any other child." I hear it from other special needs Moms. I've heard it from other Christians.
Yet as I watch my 6 month old lay his head face down in the floor, crying in exhaustion and frustration, struggling to lift his head for more than 2 minutes, then giving up because it is too hard, I know it isn't true. This is not the way it was intended to be. He was created to be so much more than this. At the very beginning of his existence, something went terribly wrong. How can I as I loving parent reconcile loving this child so much and yet hating the very thing that defines so much of who he is?
As we head into this Holy Weekend, I have to wonder if this is how God looks at me. When God created the first man and woman He looked on them with love and said, "It is very good." We were perfectly created in His image, to be His caretakers of the rest of creation, to spend our lives in glorifying Him and loving each other. But, something went terribly, horrifically wrong. From the moment of that first bite of the Forbidden Fruit, we were no longer what we were created to be. That image of God written into our DNA was corrupted. Our loving, care-taking nature was transformed into pride and self-idolatry that has redefined who we are and what we do.
From the 3rd chapter of Genesis until now, we read in the Scriptures and observe through history the story of God, the struggle of God, loving this human race He perfectly created, yet hating the very thing that drives us. The entire Old Testament is God calling to humanity to return to what He created it to be - and us failing at every attempt. It is the story of mankind lifting its head to look up to the heavens for a brief time, then face planting, eyes to the ground, in pain, frustration, and exhaustion. We cannot do what we were created to do. It takes a strength we do not possess and all the therapy, exercise, and encouragement in the world is not going to change that.
God looks on his creation with love, and hatred. But, He was able to do for me what I can never do for my son:
God came down, suffered every pain and misery, to change the very core of who I am back to what He created me to be.
You see, we believe a lie. It is a lie preached from too many pulpits in our churches. It is a lie we tell ourselves over and over again, because it is easier to believe the lie than to face the reality. We face-plant in the ground, unable to look up and tell ourselves "God loves me just as I am. I am exactly who He created me to be." We tell others they must accept us for "who we are" because "God made me this way". Meanwhile, God is sitting next to us saying, "No! I intended so much more for you than this. Pick up your head and look at me." And just as my son does, we keep our heads in the ground because we have reached the end of our own strength and cannot look up.
God looks on us and says, "I hate who you are. But I love you enough to change you into who you are supposed to be." He looks at our pride, our selfishness, our desire for ease, our physical drives, our striving for happiness, our need for success - and He hates it. It takes the purpose for which we were created and corrupts it into what He never desired for us. He sees us relaxing, face-planted on the ground, ignorant of all He has for us, and knows we are not strong enough to look up.
So He came down, got on the floor, placed His holy perfect unblemished hands on our muddy, dirty faces, and lifted up our head.
I know that as time goes on my reaction to my son's physical characteristics of his extra chromosome will fade. In time I will probably learn to expect them instead of being surprised by them. But for now, when the grief rises up, when I feel the anger begin to bubble, I am reminded of the Cross. I am reminded that my Creator so hated what I am, and so loved who He created me to be, that He took on himself what he most hated to transform me into what He most loves. One day, the transformation begun on the Cross will be completed and I will stand before my Heavenly Father exactly as He created me to be...... and, by His grace, my perfected son will be next to me.
