I was sitting on my sofa, cleaning out a bag of papers and I pulled out an unmarked file. It contained sheets of journal entries, a hospice newsletter, a church bulletin with John 9:2-3 underlined (Upon seeing a blind man, His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him.) and many drafts of my notes for an event at which Steadfast Husband and I were asked to speak.
Anyway, when I read through it this morning, I felt compelled to share it. While I feel very vulnerable and exposed, it feels like the right time. And if it leads one person to act with more compassion or understanding, to extend a small amount of grace or act empathetically toward another, then it was worth it.
Steadfast Husband and I took turns recounting the same memories from each of our perspectives. I don't have any notes for his parts (because he didn't write any) so, unfortunately I only have my half. I'll mark where he spoke for the sake of clarity.
A Beautiful Hartbreak
On my way to Barnes & Noble to write the eulogy for my grandmother's memorial service, I stopped at Target to purchase a pregnancy test. They were on sale, which I took as a sign-of what? I'm not sure.When I got to Barnes & Noble, I seriously contemplated conducting the test in the bookstore's restroom (I'm not very good at waiting), but the thought of Tiffani, the store's cafe' barista walking in on me, along with my desire to enjoy what what might be my final, (for awhile) caffeine-filled caramel latte convinced me that the privacy of my home was a much more desirable location!
Maybe it was the grief, maybe it was the caffeine, or maybe it was the desire to perform chemistry experiments in my bathroom, but my grandmother's eulogy came flowing out rather quickly and eloquently.
When I returned home, I ran upstairs to my bathroom to take the pregnancy test. As the positive line became clearly visible, delight and anxiety overwhelmed me. Suddenly, hormonally charged tears were burning my eyes and I began laughing. I was so excited, but the thought of raising 6 children seemed overwhelming.
I found John and out of a perverse joy, said those 4 little words designed to send a rush of adrenaline surging, "We need to talk." Of course the smile on my face along with the tear stains on my cheeks had him completely confused.
(John's response)
We decided to keep the exciting news to ourselves for a while.
The Tuesday before my grandmother's Saturday memorial service, I went to the doctor and she ran a blood test to confirm the pregnancy. On Wednesday the nurse called to tell me that my HCG (hormone) levels were low and that the pregnancy did not look viable, so she set out to schedule an ultrasound for the following week as they were already booked for Thursday and Friday. I told her that the thought of waiting almost a week was unbearable, especially given that I would spend the weekend saying good-bye to my beloved grandmother and asked her if they had any openings that day. Forty-five minutes later I was on the ultrasound table looking at a 15 week gestation baby! I was MUCH further along than I expected. And let me tell you, when you are prepared to see some tissue and are silently praying for a flicker of a heartbeat, being asked if you would like to know the sex of your baby is a bit of a shocker.
Lisa, the ultrasound technician, was a friend of ours and not just because we had bonded over countless ultrasound hours, but she was also a neighbor, so I thought nothing of it when the exam went on for a very long time. She then showed us one of a couple of anomalies she was seeing on the the screen. These "markers" indicated that I would need further testing. Then things became fuzzy and I only heard bits and pieces of what Lisa was telling us. "Everything is probably fine." "These things usually turn out to be nothing." "Amniocentesis." "Advanced maternal age." "...one in a million of something actually being wrong." I felt John holding my hand and brushing a tear away from my cheek.
We went to my grandmother's memorial service with more questions than answers.
(John's response)
The following Monday we met with the genetic counselor, Jennifer. She went through a litany of statistics and probabilities. Chances looked pretty slim that there could be anything wrong, but there was a need for further testing. Each test result we received, brought with it a higher chance that something was mortally wrong with our son.
On July 9, 2004 we got the phone call we had been anxiously awaiting and dreading. Jennifer, our amazing genetic counselor, told me that our son had full trisomy 18. I set the phone on the kitchen counter and walked out of the room, fortunately John picked it up, since Jennifer was still on the other end.
(John's response)
We went into fact gathering mode. We searched the internet, called my OB, our pediatrician, a neonatologist friend, and every other person we had ever met, and many we hadn't. The general consensus was that we should end the "non-viable" pregnancy. That was certainly an option, but in Indiana I only had 1 1/2 weeks to decide if that was the choice I wanted to pursue, and the one thing I knew for sure, was that wasn't enough time.
Jennifer, went to work finding out the laws in surrounding states, but by the time we learned the nuances of regulations in Ohio verses Michigan, we had decided to continue with the pregnancy for however long that may be. Chances were very slim that I would make it to term.
Journal entry from July 24, 2004 (A letter to my son)
The thought of looking into your face and justifying any decision is overwhelming. I long to look in your eyes and connect with you. Is that possible? I don't know. Will you ever take a breath? I'm not sure what to do. I'm also scared to look in your eyes, to hold you, to love you- but it's too late for that, I already love you. I feel like you are a gift from God and our family was chosen to be touched by your life-whatever that turns out to mean. I feel like we'll be okay, but what if we aren't? What if faith isn't enough to carry us through? I know I am unable to grasp the gravity of the grief I will experience upon your death, but I believe with all my heart that this is of God and He will make it not only okay but better than we could ever imagine. How will your brothers and sisters deal with your death? Your life? I can't risk their well being, but they also have strong faith. Do they know this is all of God? Do they feel His hand? Do they know He will catch them if they fall?
Journal entry from July 25, 2004
How am I ever going to deal with my baby's death when I am struggling so much through his life?
(John's response)
Early on I realized that baby Hart was a miracle. Not the obvious-You're healed- type of miracle- I never really felt like that was the plan, but I felt like his presence in our lives would bring many whispered miracles. One of the first things that happened was the freedom we felt after we accepted that there was nothing we could do, meaning we couldn't cure Hart, there was no cure. We couldn't even help him make it through the next day. At first the thought of this was very frustrating, but once we embraced that there really was absolutely nothing we could do, it enabled us to let go of our need to control the situation, and just be.
We did a lot of praying. We prayed for peace, we prayed for clarity, we prayed that our other babies would be okay and accepting, we prayed for the chance to hold our son and I prayed for God to, please, take away the sick in my stomach feeling that was becoming unbearable. It was leftover from waiting to hear results of tests and I couldn't stand it. I prayed and it was gone!
Apparently baby Hart didn't get the memo that he was supposed to be getting weaker and eventually fade away. Each doctor's appointment his heartbeat was strong and rhythmic and he was very active. As my pregnancy progressed, many of the "markers" that were apparent in early ultrasounds began to disappear and we began to have hope that Hart would be born alive. We continued to prepare for what is not possible to adequately prepare for, but held on to hope that we would maybe get a minute with our son before he passed away.
In September it became evident to others that I was pregnant and I started hear, "congratulations," and, "when are you due?" I had to practice saying thank you and giving my due date without going in to a litany of the real gift I was receiving. I quickly realized that it is not easy to convince the gal at Target that you are walking around experiencing God's glorious grace after you've said the words, "Actually my baby is going to die, but....no wait up, seriously, you want to hear this."
(John's response)
What would this miracle have looked like had we decided not to continue with my pregnancy? I don't know, but I do know there would have been one. People often assume that I am not pro-choice based on our decision. I'm not sure why I am so offended by this, but it's so important for me to let people know this was my choice. I don't know how things would have felt had I been "forced" to carry Hart without the choice, but I do know that I don't like to be bossed and the situation is too big to enter into without carefully, thoughtfully, prayerfully choosing to.
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