Daniel's Story Chapter 2

2.4. Our Church and the Heart League

Throughout the time after Daniel's birth, we have two groups of people in Mainz who help and support us in many ways. Our church, and the Kinderherzliga.
Yuki and I got married in the Auferstehungsgemeinde (Resurrection church) in Mainz, a Protestant church in 1989. I was visiting this church since I enrolled at Mainz university n 1992, and we have a Christian student group, with a room in the church's basement. Many young families and students are among the 400 regular churchgoers. The service is very ceremonial, but also vivid. The Last Supper is celebrated after every Sunday service.
When we knew that Yuki was pregnant, we asked an elder of the church - his nickname is "Father Abraham", because of his mighty white beard - if he could bless us, and especially Yuki and the baby. Thus during receiving the Last Supper, we knelt down and received a blessing.
After Daniel was born, Yuki and I had these nagging questions. Why can't we have a healthy child? Why is Daniel so severely ill? Is this some kind of judgment from God?
Especially nagging for me was, how could this all happen to Daniel after he was blessed by a church elder? Was this blessing in vain? Did God not listen to us? Why are our sincere prayers not answered?
On May 27 we attend the Sunday service for the first time together with Daniel. We still believe that Daniel is blessed, and this blessing will become clearer in the future. We receive a lot of encouragement, and many people care for us in a loving way. We have many visits at home, or we are invited to some activities. This is so natural for Yuki and me, that we do not think that it also could be the other way around.
People could shun us. People could think that we have enough problems and who don't want to bother us even more. People could be afraid of bringing the Daniel-topic up in a discussion or small talk. People could be afraid to look at Daniel while they have healthy children. People could pity us, instead of encouraging us.
But all this is not the case. We are encouraged in times of need. We get advice when we have questions. People lift us up when we are down.
This church is such a big blessing for us.

The other very helpful group in Mainz is the Children's Heart League which is heahed by the Mueller family. Their only son is two years older than Daniel and severely ill, too. On June 4, the Muellers invite us for the first time to their home. Now we know that we are not alone with Daniel and our problems. This is another encouragement. We see how the parents of another "heart-child" deal with the situation.
Especially helpful is advice on the legal situation and about aid given by the government.
Thus on the very next day I decide to go to the welfare office of the city of Mainz and get a handicapped-certificate that would enable us to apply for reduced telephone fees, free entry to museums, and similar benefits. For this certificate we need a letter form the university clinic which describes in detail Daniel's medical situation. Even though we are entitled to apply for the certificate, and we will pay for the letter from the clinic, the doctors advise us not to apply for the certificate.
"Daniel will have difficulties in finding a job or a place for education. Nobody wants to employ a handicapped person". Is their argument. "It might well be that Daniel's situation will be better in future, after an operation that corrects his misshaped heart. Then he will not need a handicapped certificate anymore, but his personal history will be tainted with it."
Who thinks of this, right now? We need help and financial aid right now. Thus the doctors issue the letter and I submit it to the city office. A couple of weeks later we receive the certificate of Daniel being 80% handicapped, which entitles us for various benefits, including a tax break.

The next meeting of the heart league is the annual summer festival. About 10 families come together. The Muellers were not able to give us the details of the medical situation of other members, due to privacy rules, but on the summer festival all parents introduce themselves and give more or less detailed descriptions of their children's situation. Later on, during coffee time, we have the opportunity to speak with many of them in private.
What strikes me most is that most families have only one child. Others have two, but in this case the handicapped child is the younger one. That means that after this child is born, the parents think that they cannot handle another child. The reasons are manyfold. Not being able to care for another child is the most prevalent. Fearing the risk of giving birth to another handicapped child is another one. The later is not without reason. Statistically, the risk for a following child is twice as high, if the older sibling has already a heart defect. We will get to know a family in Sapporo whose boys both have a congenital heart defect. More on this in a later chapter.
Speaking of statistics. Before Daniel was born, I did not know that congenital heart defects are the most common anomaly of children. Approx. 1% of all children born have some kind of heart defect. That Daniel chose one of the most complex ones makes him an exception among this one percent. It is also statistically significant that most congenital heart defects occur within boys. Here, the ratio is approx. 5:1 between boys and girls.

What is most common for most families with handicapped children is not having children after that, and it  is not what Yuki and I want. We want to have more children, for many reasons.
First, if the unthinkable happens, and Daniel should die, we want to have other children. If not, I think that our life would crumble totally.
The next reason is, that we want Daniel to grow up in an environment as natural as possible. By having him as the single child, Yuki and I fear that he will become the center of our universe -- something that is unhealthy for the family and for the child itself.
Yuki and I made this decision fairly soon after Daniel was born: We want to have other children!