We've been planning for two weeks how we will spend our short time with John. Most parents get from a few minutes to a couple of hours with their TD babies. The average seems to be about 30 minutes for moms who have C-Sections. I've been thinking about what I will say to him, what medical tests/procedures to allow and what pictures I want to take. It didn't dawn on me until three nights ago that I might not get any time with him. I have been reading some wonderful books that have been given to me and I was reading a woman's story about how she had expected her daughter to be born alive but she was not. That was the first moment that it crossed my mind that we might not ever see John take a breath. You'd think that when you are given a lethal diagnosis you would be thinking it possible that you will never meet your child on Earth. But I never even considered it. I felt side-swiped and it reminded me of how unprepared I was to hear John's diagnosis in the first place.
I had an anatomy scan at 18 weeks, 5 days pregnant. My mom accompanied me because Christian was working. My mom and I had a good time during the 45 minute ultrasound looking at Sam and John and seeing all the measurements and little organs. We paid attention but there wasn't anything that made us think something was wrong. I even asked the sonographer a few times if everything looked alright and she said, "Yes". She then pointed out that John was smiling and that Sam was really moving around. After the sonogram I saw my doctor's PA because Dr. U was out of town. We were told that Dr. U would go over the sonographers report but that everything looked great! I was excited and even put on Facebook that we had two "perfectly healthy" baby boys.
That afternoon I got a phone call from Dr. U as I was driving to Lene's (my sister) to pick up Maggie. He sounded worried and said that he had not seen the ultrasound himself but that the sonographers report had some 'troubling measurements' in it. He said that "Baby A's long bones are measuring short and it seems that his heart is a little angled." He said that it could be something serious or something minor but that he wanted me to go to the Perinatologist the next day. After the initial shock and crying was over, I composed myself and started researching everything that could possibly cause "long bones to be short" and a "twisted" or "angled" heart. After a few hours on the internet I was convinced that the worst case scenario was that we would have a special needs child with either Down's Syndrome or a form of dwarfism. This was upsetting but I knew that we would do everything we could to make John's life as fulfilling as possible. I started researching schools and programs to aid in the development of children with special needs. I was scared of the lifelong challenges John would face but was confident Christian and I were up for it.
The next day Christian, Lene and I went to Dr. B's office. His sonographer was very detailed and matter-of-fact. When we saw that John's arm and leg bones were measuring between 11-14 weeks and bowed I was calm because I had already prepared myself to possibly hear "dwarfism". When the sonographer said that his measurements suggested a type of "skeletal dysplasia" I was scared but still optimistic because I knew there were lots of different types of skeletal dysplasia. I was relieved when she measured his heart and said it looked healthy and fine. She left us and Dr. B walked in a few minutes later. I've known Dr. B a long time and he looked sad. He did a few more measurements and then told us that he was confident that John had Thanatophoric Dysplasia. Obviously, none of us knew what that meant. He went on to explain that John had a lethal form of dwarfism and would not survive long after being delivered. I was prepared to hear a lot of things but not to hear my baby would absolutely die and there was nothing we could do. I went numb and felt like everything was moving in slow-motion. I can only compare it to driving down the road in the middle of nowhere and all of a sudden a car crashes into the side of you. How did you not see the car speeding towards you? This must be the definition of sideswiped.
So three nights ago I was feeling sideswiped again for the second time in 2 weeks. I felt angry and sad that God might choose to take John before I ever get to
look into his eyes or tell him how much I love him. I remember thinking,
"Lord, surely I deserve at least a few minutes holding my warm,
breathing baby?!?" I started thinking through the prayers that I had prayed most fervently over the past ten days. Hadn't they been, "Father, please don't let my baby suffer!" and "Lord, let my sons feel my love and be comforted by you". Weren't these the things that I wanted most for my precious John? Suddenly, I realized that God taking John out of this world, before he entered it, might be the answer to both of my most desperate prayers. I don't like it - but what if death is the way to keep John from ever suffering and what if John is most loved and comforted in Jesus' arms instead of mine? I had the slow-motion feeling again but this time I felt blown away by God's goodness. I think the opposite of sideswiped is blown away.
Krystle, your precious John will know you love, he already does. and he will know your face in heaven even if he does not get to see it while he is alive. I have spent so many hours wishing I could have held my son while he was alive but the truth is, I did. I held him and was with him every minute of his short life, and he knows me better than anyone else. He wasn't alive when I delivered him but I still held him and told him how much i loved him over and over. I probably held him for a few hours. They were the most precious hours and I miss him but I am grateful i held him in my arms. Whatever happens he will know you. <3 <3 <3.
ReplyDeleteThank you for your sweet words Sarah. I am so sorry for your loss and appreciate you sharing your story. Love, Krystle
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