A Heavy Heart

On Monday Benji and I had the opportunity to sit and talk with the director of the NICU at the hospital that we'll be delivering at. I was nervous going into the appointment. I didn't know what to expect. I was praying that our doctor would be very knowledgable but also very personal and compassionate. (Sometimes in the medical field you have to settle for one or the other) However, Dr. Nystrum was both. Not only was he very familiar with Trisomy cases and with Gracie's brain disorder, but he was so kind and gentle with his words.
There was so much that was said so I will try to sum it up as best as possible. Since we have not done an amnio to confirm a chromosomal defect(Trisomy) there is a possibility that Gracie could be suffering from that or from just the brain disorder. However, because of the severity of the brain disorder both are extremly fatal. So no matter what is plauging our little one, her outcome is still the same. Dr. Nystrum seemed to think that since Gracie had made it this far he seemed confident that she would probably survive until the due date and that she would probably survive the birth. We were encouraged to here this. We, of course know that there is always the possiblity of something happening before then, but just knowing that we might get to meet her and spend what little time we might have with her is comforting to us. He also walked us through some of the complications that Gracie would face if she entered this world alive. He told us of different secenarios that would possibly take place that would lead to her death. That probably sounds disturbing to most of you, but as her mother I want to know what will happen to her and what she will feel or (hopefully not feel). He also let us know that we are totally in charge of all the decisions once she is born. This brings all sorts of decisions for Benji and me to make about the care she receives. These are hard decisions to face so we ask that you pray for us as we prayerfully seek God's wisdom in that area.
I wouldn't say that my hope is crushed but I would say that I am truely facing the reality that Gracie will die. We are still praying for God to heal her and we still acknowledge that He can but I am just starting to feel that that may not be what God has in store for Gracie.
The past week has been really hard for me as I have come to face the reality of the situation. I've always known that Gracie dying is a possibility but as my due date creeps closer it seems even more real. I remember adding something to my calendar for the month of April and it hit me. On that day, in April, something will have happened by then. Our lives will have forever been change. Will I even be able to function at that point?
As fear settles in I have to keep reminding myself that the Lords is near. Yes I am terrified of what's to come. Terrified of labor, terrified that Gracie might not make it through labor alive, terrified that we'll have such a short time with her, terrified of slowly watching her slip away, and most of all, terrified of saying goodbye. A sweet friend who lost her little girl a year ago to Trisomy reminded me that all I have to get through is today. That when those terrifying moments come, God's mercies for those moments will be there. So I try not to let my mind wander, but it's hard.
So, with a heavy hearts, we press on. We'll continue this journey for the next couple of months. And when we are at the end of the road, we'll turn the corner and continue on our next journey. One marred by sadness. One of complete brokenness, but also one of healing.

"Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed,For his compassions never fail.They are new every morning;Great is your faithfulness. "Lamentations 3:21-23