thanks down syndrome…

Timothy-UltrasoundWow. Completely ambushed at 20,000 feet. That’s what just happened to me. I am reading “Good and Perfect Gift” by Amy Julia Becker and read about how they feared exactly what I am struggling with now. What if my baby is one of the horrible stories that people don’t try to tell, but still get around? The story of the baby that was born prematurely, spent his whole life in the hospital and dies at five months old? Or the baby who had leukemia and struggled with treatments and such? Or the babies who never walk, never talk, never live a life much higher than a vegetable? What if that baby is MINE? I cannot handle the idea of my precious Timothy struggling with those kinds of ailments, or of him never being able to mentally process that his daddy adores him? Or us going through the struggles of pregnancy, and the financial difficulties, and the worrying and praying, only to lose him? You see, my unborn baby boy has Down Syndrome… and last week, he was diagnosed with having holes in his heart that will probably require open heart surgery soon after his birth.

It feels so overwhelming.

But I also read the words about how amazing their baby girl was and how she changed their hearts and minds by simply being herself, Downs and all. I read about stories from friends who know Downs kids and say they are THE sweetest, more amazing kids ever. How they love so deeply and unconditionally. How do I balance these two worlds? How do I not get consumed with the worries and concentrate on the positives when I know his chances for the negatives are so much higher than my other kids?  Like somehow Abbie, Zach and JT got all of the perfection and “poor Timothy” is virtually guaranteed a crappy, brutal road?  I want to hope for the best but I know better. Kind of like that hope you feel in your heart at the beginning of a new sports season even though you know in your head that your team has NO shot.

Don’t get me wrong, I am not dreading my boy. I cannot wait for when he is born. But I also feel like I cannot emotionally go “all in” for fear that it will hurt too much. I remember how much it hurt when JT spent almost two weeks in NiCU and how I cried for him. I cannot imagine myself being one of those amazing parents who face the death of their baby with courage and peace. I can only envision my knees buckling under that weight. But I also remember my fears with each one of my kids, and how I feared I could not love them like the one before, only to find joy and love that almost overwhelmed me. There are SO many unknowns right now that all I can hold onto are the memories of my kids. Funny how a 9-yr old, a 7-yr old and a 2-yr old can be God’s life preservere during hard times. I am falling more in love with my three kids and they haven’t done a thing, but be themselves.  And I am slowly falling more in love with a little precious boy who I will not even meet until February.  Thank you God. Thank you.

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~ by kuiperactive on November 21, 2013.

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