When you have a chronically ill child, you don't expect much for his or her future. Most parents have dreams for their children: that they graduate from a good school, enter a prestigous university, find fulfilment in their job, get married and start their own family, and so on.
For us it was different. When Daniel was one year old the doctors in Germany told us that the chances for him to become 6 years old were 50/50. Thus we didn't have the luxury of thinking of Daniel's bright future. We were confined to the here and now. We lived for the moment, being happy for every day he was with us. Being happy was not the matter of a special event or something extraordinary happening; being happy was to see him play, study kanji, draw a picture or simply see him sleeping.
(His condition was never as if he could have dropped dead in an instant. We knew that if we would die, it wouldn't be in an instant, thus I wasn't very worried for our daily life and routine. Still, we didn't make plans for his future. )
Jesus once gave the parable of a wedding (Matth. 25:1-13) to remind us of this. Jesus speaks of his second coming in Mark 13,28-37, but for us the verses also have a meaning for our life with Daniel.
Just what is necessary in this moment was important for us. We knew that we lived on borrowed time with Daniel. He wouldn't be with us forever. That's why it was important to live in the present. How many times does one postpone things to the future, because one thinks we have time in future to do the things we want to do. Consider your self lucky if you have time to fulfill your dreams later. But we didn't have that luxury with Daniel. We HAD to live now.
Daniel loved to read the newspaper ads. Supermarket bargains or second hand car advertisements were his favorite. Then he would say 'I like to have a Honda Stepwagon! When I am grown up I will buy one by myself'. The only answer that I could give was 'Listen, when you are grown up, there will be even nicer cars to choose from', but in my heart I thought that he might never grow up to own his own car. Now I have to say that this fear came true.
Of course it hurt when we heard him talking about owning his 'dream car', which would change from time to time, or to live in Germany.
Pastor Jerry once said in a sermon 'women tend to live in the past, and men live for the future'. But for us we only had one choice and this was living in the present. I am glad that through Daniel's life I could recognize how important the present is.
Remember, some day, your parents, your spouse or your children will be gone. Either gone from this world, or gone from your presence anyway, by moving to some other place. Cherish the time you have with your loved ones. You never know how long it will last. Whenever I told Daniel 'I love you', he would reply 'I love you too, daddy'. You can't say this too often to your child.
Until the day before he died, I told Daniel that I love him.