Nothing is as stable as change. – Bob Dylan
We’ve all fantasized about what it will be like when we become parents. We envision what our children should look like, how to be as parents, how patient we should be, and maybe we also have very clear opinions about how we’ll educate our kids. Perhaps we also feel concern; worries if we will cope, if we are strong enough for the task. Will the reality live up to our expectations. Sometimes the future is consistent with those pictures, but sometimes it may not be.
My wife and I have two children–a daughter who will soon turn 15 and a daughter who is 13 years old. A year after our first child was born, we were ready to welcome a sibling into the world. It was a decision that seemed completely natural. We were used to the sleepless nights, our patience was a little more trained, and above all, being a parent was an amazing feeling that we just wanted more of.
Our second daughter was born on a Monday afternoon in the month of February in undramatic circumstances. The birth went well and everything went as we had planned, for we were well prepared and knew how to do this… but still, something was different this time.
“I think we need to ask a doctor to come here and then move your daughter to Neuropediatrics Department for an investigation”, said a nurse.
Anyone who has been through childbirth know it’s the last thing you want to hear at that moment.
After a week of investigations, a doctor finally came into our room and said they had a theory; “It’s called Goldenhar’s Syndrome. Two children a year are born with this condition in Sweden. A tough time awaits you.”
A dozen different doctors from various departments introduced themselves and welcomed us to their respective departments. “It is likely that your daughter is deaf, it is likely that your daughter has a visual impairment, it is likely that your daughter has severe deformities in several back and neck vertebrae” etc. etc.
What do you do when everything falls apart? What do you do when all your expectations are plummeting? What do you do when there is almost nothing to hold on to? How much can you take? Well, much more than you ever imagined, is my answer.
I promise, the war that followed was tough, far more than tough. Nellie, our daughter, has undergone over 20 surgeries and we were regular customers at the Children’s Hospital for many many years. It was all about getting through it, accepting it, surviving it, keeping the family together and not just acting out of our own needs, but for someone else.
During those early years, I learned a lot about myself and how I wanted to be as a parent. All the predetermined strategies were torn down in a very short time, all of the images, all of the expectations. There was no longer so much to hold on to. Almost nothing. We went out on a boat on a stormy sea and just wished to arrive to a place we did not know yet, but hopefully somewhere safe. We had to let go of our control, rely on others, let strangers into our private sphere, into our home. Sitting watchful nights through, despairing, crying.
But slowly we taught ourselves to really know what it means to have patience, be comfortable in the uncomfortable. We taught ourselves to be strong and weak, sad and happy, angry and fragile and that those feelings can coexist at the same time. There is room enough in a human heart. We were actually changing as people. We grew up within a very short time. A presence in every moment grew out of this (the situation demanded it), but also a clarity and honesty about how things are and how we relate to it. You have a choice; you can take your thoughts and feelings as absolute reality or see them as an opportunity to let in new perspectives. Open up instead of closing down to yourself. In our situation, we were drawn back to the present again and again. No more internal images and expectations to hang on to. I understood for the first time that the presence is equal in all moments, and for me, this is most clearly perceived in the most difficult moments. It can be so strong that you feel it in every cell of your body.
So, without preconceptions, without all those inner pictures taken for the truth–that’s how I want to be as a parent. Curious. Steady but never fixed. Open minded. As authentic as possible. Flexible not rigid. And with the growing ability to embrace life’s ups and downs.
With that said, honestly, this journey is not about me. So what happened to Nellie? The real warrior in this story. She is now 13 years old. A stubborn, smart and beautiful girl. Full of self confidence, and challenges us each and every day. She has good friends and loves life in all aspects. She’s still a regular at the hospital, and has a couple of surgeries yet to go through, but she is stronger than ever and with the support of our love, she will manage in the best of ways. I’m 100% sure about that. We are all exited to follow her on her journey through life, and I’m sure she will still surprise us many times along the ride.
If somebody would have told me that life would be this good 10 years back–I would doubt it strongly.
I have changed. We have changed. Everything is constantly changing. And I will keep on embracing the rollercoaster of life as best as I can, and I don’t want anything to be in any other way than it is. In this moment.