The Dallas Morning News has published a beautiful [video] article Choosing Thomas, which details the heartbreaking and joy giving story of TK and Deidra Laux whose son Thomas was a victim of Trisomy 13.
As a parent who has walked this path, I want to complement the staff of The Dallas Morning News on a wonderful job of presenting this story, capturing the heartache and disappointment and fear that parents feel when faced with the terrible news: "There appear to be some serious problems." The staff also did a wonderful job in capturing the surprising joy that a baby with "serious and fatal problems" brings to his/her parents and family and friends.
As I watched the video and read the accompanying article(s) and journal, I continually thought: This is our story. That's what happened to us.
However, our story was different in that our Abigail Hope didn't survive to birth; she was stillborn. Our story was also complicated by the fact that it took place in Israel, far away from our family and most of our life friends.
We were thankful that there were a few people here who hurt with us, but so many seemed to dismiss our situation as nothing too serious. Perhaps some just didn't know what to say, which is common. But in many cases, it was simply a cultural callousness toward these types of things. At least one person assumed Abigail didn't have a name yet, thus she didn't have "person hood." He was wrong on both counts. Others blindly followed the traditional Jewish thought that a life duration of more than thirty days establishes a human being as a viable person. If a child dies before that time, he is considered to not have lived at all.
The medical community offered no comfort either since they could only think of one thing to say: "TERMINATE NOW!" In fact, the country's expert in 3-D ultrasound and genetic abnormalities was shocking in his callousness: In response to our question regarding the reasonable expectation of length of life for Abigail should she survive to full term, he said, "Not long, but I would hope she wouldn't live one second! Her problems are too severe to want her to live. My advice is to terminate NOW!" Unfortunately, that wasn't his only disaster in bed side manner, but I'm not interested to recount the others here.
"Terminate now," was so foreign to our thoughts, the doctors all thought we had parachuted in from another galaxy. We insisted that we wouldn't even consider killing Abigail, and the doctors looked at us in utter disbelief and disdain. Who were we to be so resistant to their advice? They were the experts; and they know the outcome of these situations. I knew our position was right, but it was nice to hear other parents in our situation agree with us - even three years later: Toward the end of the video report [in a voice over the funeral scenes] Deidre Laux clearly articulated our thoughts: "We didn't not terminate because we were hanging onto some sort of hope there was a medical mistake or there was going to be some some sort of medical miracle. We didn't terminate because he's our son." Because Abigail was our daughter! We loved her, broken body and all; how could we even consider breaking her body more?
Burial is another point at which our story and the Lauxes' diverge. In Israel, most cemeteries are religiously segregated, which is to say that Abigail couldn't be buried in a Jewish or Muslim cemetery, the most abundant cemeteries here. As it turned out, she wasn't welcome to be buried in the evangelical Christian cemetery either, which is a story in itself.
This all happened so fast, and the hospital staff was pressing us for an answer regarding the disposition of the body. Dealing with death, especially that of our own child, in Israel was all new to us. We didn't know to whom to turn. And it was late Thursday afternoon, which is to say that the Sabbath was quickly approaching and things would be shutting down for the weekend. We made a few phone calls, only to reach dead ends or endless stalling, which we understood to be a no without actually saying, "no." Meanwhile, the hospital was pressing for an answer.
Finally, we decided to use the service of the Jewish burial society, who gathers the bodies of all children under the age of 30 days and buries them in an unmarked grave. I guess to their credit, even though they don't consider the children to have genuine person hood, at least they give them a somewhat proper burial.
I recommend this video report to you. If you aren't familiar with the emotions and thoughts and struggles that take place when parents are told, "there are some problems," this report will give you some insight.
If you are struggling with the issue of termination, please watch the video - to the end.
In our days on this road, we leaned heavily on each other, but more heavily upon the Lord: "Hear, O Lord, and be merciful to me! O Lord, be my helper! (Psalm 30:10)” He was, and continues to be.