My daughter died one year ago from a fatal diagnosis, a severe malformation of the brain. I used to put a lot of effort into research and education of her birth anomaly. But now, in the face of her death, I know that the cause is secondary to the reality of losing her. Whether the cause was accidental, an illness, or a birth anomaly, the pain is the same. My child is dead. Though each of us traveled in a different ship, we are all in the same boat now. Yes, we are fast approaching the one year anniversary of Kylie's death. It is hard to believe. I have not traveled that far away from her in this year. I still carry myself and my thoughts very close to our life together. It is such a difficult separation for me since she was the center of my life, heck, our whole families lives. This loss not only of my little girl but also of my occupation, my role, has been doubly hard to deal with. Caring for her was my full time job. It was the job that I feel I was born to fulfill, and now that she is gone I feel incomplete. I feel that a big part of me is buried with her.
So, after I make it through the 'first year', the goal will be to discover who I am without her, and where to take my life from here. The ups and downs, the intensity of the grief at times, the longing, the aching, the emotions that sometimes take over my life, have been unexpected. I fully bought into one of the myths about grief. It was the myth that an "anticipated grief" should be easier to handle. I fully thought that I would be able to sail through the grieving period thinking only wonderful thoughts and sweet memories of how blessed I was to have had her, and what a miracle child she was. And yes, I do hold on to those thoughts. But they have not been enough to extinguish the pain of losing her.
I am different now. I will always be different from those untouched by child death. I know depths of depression, hopelessness, loneliness, sadness, and pain that is simply not in the natural order of life. In this past year, I have learned the hard way to allow myself to grieve, to accept that I may not be able to accomplish the things I used to. I've had to lower my expectations of myself as my mind is constantly filled with thoughts of Kylie, of her life, of her death, of our experiences together, both good and bad. It takes a lot of mental energy to process these thoughts. I do not accomplish on a daily basis, even half of the things I used to do. My self worth has been slammed, my confidence has suffered, and it is from a very low point that I must slowly, rebuild myself into the me that I will become without her.
Don't buy into the myth that because our children are born with a fatal diagnosis, that their eventual death will be easier to handle. I grieved for the loss of my perfect child every day that she was alive. I cried a little each day, for 1,215 days. But even knowing that it would end in her death has not made this reality any easier. I was (we were?) so intertwined with her existence, that it truly was as if part of me died with her. It seems sometimes that it was all of my good parts. These emotions, or "stages" if you will, from denial, to loneliness, to anger, have left me very humble and weakened. I gave myself completely to her, 100%. And I suppose that learning to live without her will be a lifelong journey. I do not expect to ever "get over" her death, but hope to get through the pain to the place where I can think of her and not cry; think of her and be filled more with gratitude than with sorrow.
January 18th is the one year anniversary of the death of my beloved child. Our family and a few friends will gather at the funeral home. They have a large bird aviary and we plan to release three finches in her memory. One for each year of her precious little life. Gentle days to you all, as together we grieve for our special children.
