Everybody that has kids, knows that they make you feel more vulnerable. I felt a latent fear that was born with both my children. With my first son quickly the fear became less present and more latent the more he developed and grew. For my second son, the fear became worse, for at least 3 months and after that it took a year to get to terms with my pain and the fear of the future. I felt, that for the first time in my life, death had been put on the table.
The day after Ole was born he needed surgery. His intestines were not complete and the surgeons had to fix them. We knew this was necessary before he was born, but seeing Ole in the machines, tubes coming in and out of his just born, little boddy was the most painful sight of my life. It was unthinkable and unacceptable and yet it was there, a reality to deal with.
I live by the motto: "I create my own (perception of) reality. I cannot control what happens to me, but I can always control how I deal with it." When Ole was in that hospital bed, for the first time in my life, I felt that this motto was really being challenged. Up to then it felt easy to pretend that I could create my realities. The first step in creating reality was to accept reality as it was. "Accepting what is" is the key to many Eastern philosophies. And I had the hardest time accepting this new reality: my child having a genetic incurable disease limiting his life expectancy to under 40 was just not acceptable. I hated hospitals and they would be part of our lives as of now. I was vocally against antibiotics and they as well would be a companion in our process to deal with the disease. And there were many more things I was against that all were part of our new reality and that could better be accepted as part of the new reality to not loose tons of energy, get bitter and depressed.
The first days after his birth I woke up at night and felt I needed to see him. Luckily the neonatology was open 24 hours a day, so I could always go and see him. It took him 3 weeks to get out of the hospital. And then it took another 3 weeks to get his first pneumonia and the diagnosis of cystic fibrosis. He was still 500 gram lighter than when he was born and he coughed like crazy. Those 10 weeks were heavy for everyone around Ole: we were in constant pain, fear and complete sadness of what was happening to this little being.
Amazingly in all those moments of deep pain and fear there were also moments of happiness and joy: e.g. almost 3 weeks after his birth, when he was allowed to take my breast for the first time and he started drinking like he had done nothing else before. Or the moment 5 days after his surgery, when he was lying on my nacked tummy for 5 hours with all the tubes in his body and I would not move a dime because I loved him being so close to me. And of course the moment he made his first poupie 2,5 weeks after his surgery, giving us a sign that the surgery was successful.
It is amazing how these small events were able to fuel us up, make us intensly happy and give us hope and energy to go on. One of our ways to deal with this situation was continuously to face the brutal facts and believe in a positive outcome - the Stockdale paradox. It took me quite some time to "accept what is" and embrace the fact that hospitals and antibiotics would be part of our lives as of now.
After we had survived the first 3 months, Ole slowly started an upward line. He grew, gained weight and become a very happy little baby. During that period we started to think and worry: bacteria, puberty, life expectancy and all kind of other things that are attached to cystic fibrosis.
We are now in our seventh year with Ole. It is exactly 6 years ago in the beginning of October 2009 that we got the diagnosis cystic fibrosis, that changed our lives. And in the meantime we see it as "any child changes one's live". I have repeatedly felt that my general happiness level has gone up. Maybe because we have hit rock bottom and we know it could have been much worse or maybe because we are just more aware that health is not something granted. We enjoy being a family and being fit and healthy very consciously and we have something to hope for and to give all our energy to; we have a very clear purpose which is always around: finding a cure for the chronic disease of our son. Our foundation www.run4air.com is one of the ways to give energy to this purpose.
Whenever I start to think and worry about the future and about anything that could happen to Ole I remind myself of the lesson I have learned in this process: I am here now and I will cross bridges when I get there. The confrontation with death in my life which by the way seems far away again right now also created some freedom in my soul: Life is not about how old you get, but about how you get old.
I have learned a lot from this as I call it "crisis in my life": Happiness is a function of expectations and results; expectations were very poor upon Ole's start into his life and results are so far much better than we could have ever hoped for; he has been doing great year by year. Happiness is also a mindset: be aware, be here and now, accept what is, give space and take time (to accept what is) and enjoying the good times.