Count it all joy...

“It will be my joy to say your will, your way.”

“You can have all this world, just give me Jesus.”

“You give and take away but my heart will choose to say blessed be the name of the Lord.”

These are all lyrics to praise and worship songs I have loved and sang “wholeheartedly” many times. When these words become your reality, when you are asked to give something back to the Lord, something you hold dear, these words take on new meaning. They are painful to sing. They can be painful even to hear. Yet I know as tears choke me and my cracking voice barely whispers these words, they are more real to me than they have ever been before. As my faith is put to the test and my heart is exposed before the Lord, true worship occurs. 

On a day full of anticipation and plans for a celebratory party that evening, we received the news that has shaken us to the core.  As we waited patiently for the doctor to come in after our gender ultrasound, we made our final guesses: boy or girl? My mind was racing with nursery ideas, smocked outfits, monogrammed initials, and baby shower plans. The new doctor we were seeing quickly marched in flipping through her charts and said, “Now who are y’all again? Ah yes. The baby who has prominent ventricles.” My heart stopped. What? Prominent ventricles? No one had told us this before. We had a normal, healthy pregnancy as far as we had been told! What did this mean? As I choked out questions, I felt as though I couldn’t breathe. Tears began stinging my eyes. The doctor listed off possibilities for what this could mean for our baby. Down syndrome. Stroke. Hydrocephalus. Trisomy 18. I went to nursing school so I knew the realities of these conditions, especially the last one - Trisomy 18. I remember studying this as clear as day because it was the one condition I was petrified my baby might have one day. It had the most complications and the poorest prognosis. The text books deemed it “incompatible with life.” The room began to spin. She told us that we would be referred to a perinatal specialist in Atlanta and they would try to get us in as quickly as possible. Our day of celebration quickly came to an abrupt crash. Suddenly we were faced with decisions, "Do we still have a gender reveal party with my family? Do we need to put everything on hold until we know more? How do we move forward?"

That night we chose to celebrate. Our incredible nurse practitioner encouraged us by saying, “There is still a life inside of you to celebrate and it is a boy or a girl.” We found out that evening that inside of me is our sweet Margaret Anne. The little girl I have prayed for since I was a little girl. I have had her name picked out for over 15 years. Growing up I have prayed for my future children but she has always been the only one I have prayed for by name. My first daughter was always going to be Margaret Anne. And she is here. Marshall asked me if I still wanted to give my specially chosen name to this sweet little girl. I simply replied, “that is her name.” 

The next day Marshall and I drove to Marietta to meet our new specialist. I cried the whole way into the office. It was a big, fancy speciality center, the kind of wing you see for cancer patients, heart patients, or other serious medical conditions. I was overwhelmed with the fact that this is where we were. Our baby girl needed this kind of speciality care. As our doctor performed our level II ultrasound he showed us the “prominent ventricles” that were actually choroid plexus cysts on her brain. He also pointed out her clenched fists. Both were signs of my biggest fear, Trisomy 18. He explained that 50% of t-18 babies either pass away in utero or are born as stillbirths. The other 50% usually do not live more than a few hours, days, or weeks. As we sat in Dr. Allen’s office discussing our options, it became apparent that many families choose to abort these kind of babies. We quickly assured Dr. Allen that for us that was not an option. We chose to wait for our genetic screening test results to come back before we did any other type of testing. We waited several days for these results to give us a little more clarity. Negative for down syndrome. Negative for cystic fibrosis. Positive for trisomy 18. I grieved all over again. I hurt in ways I did not know I could hurt. We decided to go with an advanced level DNA blood test that is relatively new but considered highly accurate. It is also much less invasive than an amniocentesis or CVS testing. We waited ten days to get these results back and we prayed and prayed and prayed. Marshall spoke to the doctor and delivered the news to me - positive for trisomy 18. Once more I grieved with my whole heart. I felt as though any shred of hope I had left was snatched away. 

None of these tests are considered 100% diagnostic tests. Only an amniocentesis can properly diagnose trisomy 18 in utero. However, with all of these tests giving the same result, the ultrasound confirming it, and the high risk associated with amnio, we feel this is the closest we can come to a diagnosis without endangering our sweet girl more. It does mean we will live the next 3-4 months waiting. Waiting and praying with every breath that we take. Praying for a miracle, praying for some kind of good news, praying for the unthinkable, but also praying that our frail hearts will continue to trust in Christ no matter what the end result may be. Medicine has all but confirmed 100% that our Margaret Anne will indeed have trisomy 18. While we wait and cry and pray and seek to continue moving forward we know that we serve a God who is in the business of defying the odds. He works in the realm of the 1% chance. We trust that He has the power to heal our little girl if He so chooses. As one of our dear pastors from First Presbyterian prayed over our little girl, “Lord we know that you can. We are asking that you would. But we are trusting in your will.” This is the heart cry of our family right now. Just as Jesus prayed in the garden, we ask the Lord to take this cup from us. To take it from our long desired Margaret Anne. But we end it by saying, “Not our will Lord but Your will be done.” 

It will be my joy to say your will, your way.

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4

~ Mary Michael