If just for a moment, which is, by nature, you are blind to prepare? You can not. There you off your feet and go to the river sweep you. That life will be for this time of year.
We waited for a call from a team of experts in the amniocentesis done my wife – reserved for 19 weeks ultrasound detected problems threatening our body fetal life. We must build the bad news for two weeks – and 18 days and counting, because the control – but nothing we could have prepared in the learning process of our baby.
Sarah took the call. Fortunately, her parents were my tasks (including the acquisition of the flowers). I opened the door and immediately knew something was wrong. Sarah took me to his parents’ bedroom and had our son in the room. Nearly words …
We will never forget. We were there at 17.00 at the end of our bed, but stunned – the feeling to feel something; deaf. Like what you just told us? At times like this, you can not shake that can not go to new information – not for a day! We horribly sad, but very vulnerable in the middle of a mystery.
Our baby has Killian- Pallister syndrome (PKS), a very rare genetic disease twelve only a few hundred people are diagnosed worldwide. The cases of our children are not complicated children by serious internal organs very unusual problems in MCC. And MCC can be recognized in general, conditions are much worse than, for example, Down syndrome. Most people with MCC never walk or talk, and many are very late. (Our baby was born dead.)
So our expectations endless death today. The more you explore the MCC, the shipwreck of our expectations. Our only consolation is convenient at this time to support both MCC community locally and globally.
We learned our pain is very little that can be done to others, such as a patient at the center of moments that can not be reconciled.
We learned that there is not the point just hugged and cried in a rage and even more confused.
We learn really being kind to ourselves and to each other.
The main beauty of sadness, we know that is simply unacceptable.
Acceptance grief cause us to grow in our acceptance of reality and life.