...finally

We have been waiting for this for such a long time, it has defined how we have lived since we noticed she was not like everyone else. Going to the doctor's office after about three years of searching for an answer is like signing my daughter's life away to a disease that only a handful of people know. It was a fateful day for my family and for me, I was anxious and nervous but also a bit relieved knowing that we will finally know...

We had to wait since someone came first, looking at the baby before us I thought how could he be afflicted with a genetic disease, so innocent and so young... maybe 10 months old at most. I wondered in my head why there were imperfect angels and what was the reason God gave them and their families a special burden, a cross they have to carry all their lives.

I was jittery, I lingered and walked around until it was our turn. I knew in my heart that Sophie had Cockayne Syndrome; it was a gut feel that I had felt the moment our good geneticist told us that it was the suspect diagnosis. But now the confirmatory test is here, and it gave me the same answer I have always known in my heart... Deep inside I was crying, praying and yearning for God to give my daughter the life she deserved but alas, I knew that things would be different and that she herself although beautiful in our eyes will never be like any other child.

The geneticist was telling us every sign of the CS Type I, which my little angel belonged to. Small frame, curved back, difficulty in digestion, small head, hearing loss, total or partial blindness, mental handicap and  photosensitivity. She was as kind and as compassionate as any doctor could be, we just kept silent but with questions popping here and there, of which she more than happily replied to.

I knew from that moment, and the fear that I have always had in my heart. My daughter would only live up to 20 years of age, at most. They are telling me that only God can tell but I knew that one day I had to let her go and I was dying inside knowing that my first born, my lovely angel would leave God's good earth before me... I felt numb and I started crying inside... But of course, I had to stay strong for my wife, for my mom and especially for my little Sophie.

The most painful part of it was, she was just staring at me blankly with all her innocence perhaps asking what is the matter or what will happen to her. I have always known that although she may not be as mentally or emotionally developed as children her age, she was bright and inquisitive, which makes it even more painful since I feel like she is trapped inside her own body but yearning to be set free...

We left the office, expressed our gratitude and said our goodbyes to our kind and compassionate doctor. On our way home, we talked about the prospects of her life but we knew that our little angel will pull through and we promised in our hearts and in those moments of silence that we will love her no less.  

I was a young dad when she came and then I had to grow up as fast as I could so that I could provide stability in our household but I never expected that she, of all people, would be the one who will carry the heaviest cross... I just hope and pray that God will give all of us the strength to go through and make the most of our love and time with our dear little angel.

But my heart remains broken.