Sharing the Journey: Waiting
The day of the amniocentesis, we came home and made phone calls to all of the waiting grandparents. Some asked questions, some sat in shocked silence, no one cried. I couldn't understand that. It is a difficult feeling to go from praying that it's not Down's Syndrome to praying that it's only Down's Syndrome. The doctor had told us that the amnio results would take ten days, but that they might have some preliminary results after two days. That night, we talked about all of it--the diagnosis, our options, our daughter. That was the day that I named her. We had discussed names before and we both liked Raelyn Elise, but I had reservations because of the spelling. Our last name is frequently mispronounced and even more frequently misspelled so I kind of wanted her to have an easier first name. However, the moment I saw her on that ultrasound screen, that was her name. She was my Raelyn.
We prayed that night and felt at peace with the day. We had some theories as to why we saw some of the markers that they were worried about. Our quad screen test had come back with all negatives and we knew (beyond a shadow of a doubt) that my dates were correct so that wouldn't have affected the test. My husband had a hole in his heart when he was born that resolved after birth, so we weren't too worried about the Ventricular Septal Defect. We reasoned that since she was moving around so much during the ultrasound, her head might have been tilted back some so that her eye sockets made it look like a lemon head. I spent the next two days happy and at peace. I had printed out a normal karyotype, placed it next to my computer at work, and every time I looked at it, I said to myself "Two and only two." When I got the call to come back to the doctor's office for the preliminary, I went by myself. I was so sure that they were going to tell me that everything was normal. I had such peace walking into that horrible genetic counselor's office and I think that is why the bad report sent me reeling so far downward.
After that, we waited ten days for the final results of the test. We had decided at this point that for us to carry her to term would be worse than letting her go. This was by far the hardest decision I have ever had to make. For my husband and me, we thought it would have been harder to hold her and let her die in our arms. It was like being told that my daughter had been in an accident and she would never regain consciousness, never breathe on her own, and be resigned to a lifetime of tubes and needles and medicine. To be completely honest, my prayer at that time was not "God, please heal my daughter" or "God, please let the test be wrong." My prayer was "God, if you have not willed for my daughter to live past birth, please take her before I get these test results." I naively thought that if I knew she was in Heaven, healed and whole, that I wouldn't hurt so much. I was wrong.
I never felt her little 'swishies' after the amnio and I have an ultrasound picture (from where they were guiding the needle) that shows her lying still at the bottom of my womb--a strange sight since she had been bouncing off the walls minutes earlier. I had a scare that landed me in the hospital the following weekend (before we had the final results) and we heard her heartbeat there, but it was slower than normal. After we received the final diagnosis of Trisomy 18, and the doctor had time to process all of the pictures and estimate the extent of the defects, we scheduled an induction for the following Sunday after church. It seems so wrong to write that because we are Christians and we are pro-life, but I couldn't see the good in forcing my daughter to go through a painful birth, only to live her entire life on earth under bright hospital lights, with tubes and needles and poking and prodding. The doctor outlined the problems that he could see on the ultrasound and told us that there would likely be many more that he couldn't see right now. To allow her to go straight from the love and comfort of my womb to the waiting arms of Jesus was the better option for our family.
This was easily the most heart wrenching decision of our lives and I still feel guilt and doubt about it. I wonder if things might have been different if we had continued the pregnancy. I just couldn’t bear the thought of waking up every morning wondering if today was going to be the day that I miscarried and lost my daughter or trying to explain to people why I wouldn’t need a baby shower. I know God is sovereign and I know that He knew my decision before the beginning of time, but I still wonder if he is disappointed in me. We prayed and we offered her back to the Lord. He gave her to us as an idea and later as a broken body, but we were never meant to keep her. We felt peace about it then and I know that most of my feelings now, three months later, are thoughts from my flesh sneaking in but I still wonder…
He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the LORD's favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. –Isaiah 61:1-3
Remember your word to your servant, in which you have made me hope. This is my comfort in my affliction, that your promise gives me life. – Psalm 119:49-50
Please continue to pray for my husband and me. I have felt your prayers and I thank you for them. He did get a positive medical report yesterday that we are thankful for. I am dealing with some emotional and spiritual issues of my own
Eleven years a mother
2 months ago