Å miste en datter

Mariana, my daughter, died 3 years ago.  In some ways it seems so long ago, a lifetime; so much has changed during these past few years. However, in other ways Mariana is still so close to me, a part of me, and it is almost impossible to believe that it has already been three years since I was able to hold her. Her death came as a terrible shock, despite the fact that I had spent most of her 7 years trying to prepare myself for it. We knew we would lose her early; her body just didn't work the way it should. She was severely disabled and quite often very sick. She had very little control over her movements, she couldn't speak or walk. She was plagued with constant epilepsy and needed help with everything. Her lungs became weaker as she grew. Her mental development was never beyond that of a young baby. Still, she had a great smile and she was able to let us know what she liked and didn't like. To those of us who knew her well, she was actually very expressive. And I believe she knew who we were and that we meant something to her.

When I think back to that first year after losing Mariana, I remember being so very tired, absolutely exhausted. My entire body ached, as if I had just run a marathon. I remember being overcome with guilt for not having done enough, not having tried hard enough to make her better, not having given her enough time or love. I remember feeling terrible because I did like the fact that I could suddenly sleep all night, that I wasn't in and out of the hospital all the time and that I didn't have to deal with all the medications and machines that Mariana had required. It took a long time before I could accept the fact that it was possible and OK not to miss all the difficulties surrounding Mariana while at the same time I could miss her dearly. I can't remember exactly when all the guilt began to lessen, but it did, and it became easier to live with the knowledge that I had done the best I could. 

I spent Mariana's seven years taking care of her. It was a full time job, even with all the amazing help I had. I studied a bit on the side and I later had 2 other beautiful, healthy children, and yet taking care of Mariana is what I did. I was a mother to a disabled child. When I lost Mariana, I lost my daughter, my job, and an identity I had spent years creating. Suddenly, everything I had done the past 7 years was no longer necessary and this was difficult for me. It has taken a long time to find out who I am after Mariana. I now work full time, doing a job that I love and I am happy, but it has taken time. I still feel that people really don't know me until they have heard about Mariana. She is the reason I am who I am today. 

When I think of Mariana, I am amazed at how such a little girl who could neither see nor speak, and could do so little on her own, was able to so greatly impact the lives around her. She gave me so much and taught me so much, without ever having to say a word. Mariana taught me how lucky I am. She taught me how to appreciate the little things in life. She taught me patience and gave me a strength that carries me still. I miss her. I miss holding her. But I am also so grateful for the time I had with her and all that she gave me. I like to think of her as being somewhere close by and able to fly....finally free from her body that just didn't work. I like to think of her as my angel.