hello...and goodbye

How do you live in the place between life and death? Like, where is that happy medium between realization of sorrow, despair, the reality of impending mortality...and joy in savoring the beauty of everyday fleeting moments, however normal they might seem? How do you plan a funeral for your child you have yet to meet?

We finally decided to get the amniocentesis, so we can get an official diagnosis. I admit - initially, I didn't want to do it because I was freaked out by the procedure (hello! Giant needle stuck into my belly?!!?!) But, honestly, some of the reason I didn't want to do it was because I don't know if I was quite ready to label Noelle with this disease, or even really come to terms that this is really what we are dealing with. 

She's my daughter, after all. 

It has been a blessing to have this time to know her, without the official label, without in my mind thinking that is all that she is, a broken, unborn baby bound for death. But as we wait for the diagnosis, I know I need to continue to see her as who God made her and not with any of the things that are wrong with her body. 

We also came to the realization that we need to know Noelle's diagnosis so we can plan better for when she is born - whether that means to intervene to save her life medically (or if doctors even would do such a thing), or to let things take their course. Coming to terms with the fact that there might be nothing we can do is hard for me. Its been hard for me to give up wanting life for her, and pushing for that. But when the doctors tell you this is a lethal disease, can you fight? Should you? Also, so much depends on every minute of her life, how her body does living and breathing in this world, and that is something only God knows.

He knows. Oh, how much comfort that brings me, despite the immense weight and sorrow there is from having to say goodbye before even saying hello to my precious Noelle. Because He not only knows, but He is in control. And He is good. He has been so good to me, and I know his promises to me still stand. I have seen His faithfulness despite my despair, I have wrestled and stubbornly seethed against Him, I have experienced his overwhelming mercy, I have seen tiny glimpses of His plan unfolding. I know Him, and I know He walks literally every step with me, closer than my skin. Saving me, loving me, sanctifying me, comforting me. 

But yes, sometimes the pain of loosing Noelle takes my breath away like a swift punch to the gut.