Daniel's Story Chapter 2

2.5. Life in Mainz

Now we start living a normal life as a family. We take him to the church, we go for a walk every day. The baby car we got from my sister-in-law is used more and more. Sometimes we leave him with the Big Daniel and Yuki and I go out. On June 23rd is a big festival in Mainz, the Johannes-Fest. It got its name from Johannes Gutenberg, the most famous son of the city, which honors him for the development of the modern printing method with movable letters. It is still cold out side, but I carry Daniel in a baby holder in front of my chest.
During the next weeks and months we enjoy seeing Daniel getting bigger and stronger. We know that he will stay smaller than other babies. The doctors tell us that this is better also for his heart, since it does not have the power to sustain a larger body. So we are aware of his getting bigger in a slower pace.
We go to the regular check-ups, either to the university hospital or to the doctor downtown Mainz. What hurts is to see that the check box "age wise development" in the health-check booklet stays empty.

When Daniel gets older, he quickly learns to distinguish between his parents and others. May it come from the pain at early days, or due to the fact that we held him too many times in our arm, he especially dislikes doctors. He voluntarily does not allow a single touch! A doctor looking at him is enough to trigger a reaction. Worse is a stethoscope, even worse are the electrodes for recording the ECG. Not to to mention pinching him with a needle for blood tests! Either Yuki or I have to hold him in our lap when the electrodes for the ECG are attached to his chest. We have to be careful to avoid skin contact, since the potential of our skin would interfere with the ECG recording. Taking x-rays is cumbersome, too, since I have to be with him all the time.
The doctors in the clinic record this dutifully in their reports
"Unchanged, a very refusing child"
"Daniel becomes strongly cyanotic when he cries."
"Sonography of the chest is not successful, due to Daniel's agitation."
"The abdomen and the liver cannot be checked due to the heavily crying boy."

Daniel continues to vomit every day, at least once. It never occurs to us that this is not normal. We have of course heard that many babies blurb a little milk after drinking. But in Daniel's case it is often that he vomits the whole contents of his stomach. Another quirk of his is that he refuses any other drink. No water, no fruit juice, either. He maybe dislikes the sour taste of the latter one, because he always has a similar taste in his mouth after vomiting. Even when we try to slowly accustom him to juice, by adding a small amount of 1 tea spoon in one 250 ml bottle of milk, he steadily refuses to take a single sip. So much for the theory that small babies do not recognize their environment!

When summer approaches, we spend even more time outside with Daniel and he gets a nice suntan. In a sense, we are very naive concerning Daniel. We treat him as a normal child. Since we do not own a car, we either take a walk or public transportation. Taking a baby car into a bus or a tram is easy and other passengers are generally very helpful in Germany.
Many people on such occoasions, or the streets, look into the baby car and give well-meant comments.
"Oh, what a beautiful baby!" ...I agree, of course!
"He has such nice red cheeks. He looks so healthy!"....I can't agree to that. It is true, Daniel has rosy cheeks. But this is not because he is so healthy. They come from the lack of oxygen in his blood. It is called cyanosis. But I keep this to myslef and normally nod in agreement when a phrase like this pops up in a conversation with a stranger. What does it help that I explain Daniel's health problem?