Brain Aneurysms Suck

Brain aneurysms suck. I have not become an expert, like I might have expected to be. Past one year now since Susanna’s aneurysm ruptured I am still busy grappling with the position of my feet on the earth. Such a wonder every day, the earth is still here and I am still on it, with everyone else except my child, who has died. I learned as much googled information as I know during the early days. It was a couple of weeks before the autopsy confirmed that she did in fact have a ruptured brain aneurysm. This was what was speculated after we knew there was cranial bleeding and heart failure. I remember numerous conversations about all of this with the friends who came to our house and to the funeral home. I wanted to give them much more of an explanation. I wanted to be able to tell them an exact cause, and have it be something so rare that no one would need to worry about their own children. I want Susanna to be the last healthy, beautiful child in my life to fall asleep and never wake up again, here today, gone tomorrow. Likely she will be, but I no longer live in a world of most likely and probable anything.

If you google accordingly, you will find that a ruptured brain aneurysm in a five year old is exceedingly rare, so much so that there is reason to investigate genetic conditions (even more exceedingly rare ones) which might contribute to a brain aneurysm. We are. We are somewhere mid -stream in a sea of medical/insurance bureaucracy, DNA tests and genetic counseling. Nothing has been found so far. The best scenario would be to find something in Susanna’s genes which does not exist in her brother or anyone else. It seems more likely we will only know that there was an imperfection in a blood vessel, that blood pooled up until it broke and bled out. This might be the extent of the earth knowledge, “subarachnoid hemorrhage due to ruptured cerebrovascular saccular aneurysm”. However it happened, it still sucks.

I have more than a couple of gray hairs sprinkling my dark brown forty nine year old mane of hair. There is a particular circular clump of whiteness on the left side which appeared last May. I checked the location and it does indeed match the site of Susanna’s aneurysm, left middle cerebral artery. When I use a dark hair color rinse it is the only place the gray stubbornly remains. I have thought about turning it into a full white streak reminiscent of Lily Munster. More likely I will learn to love it and see it as a link to my daughter, the site of a cord connecting me to the piece of my heart which lives elsewhere, forever.

One of my favorite photos of my kids was taken on my son’s first day of kindergarten. The two of them are standing in front of his school against a brick wall. The wall is painted with the school’s mascot, the seahorse. Susanna is on the left, in a white dress her father had just brought from Ecuador. It fits a bit large and hangs off of her shoulder. There are tiny embroidered wild flowers of many colors, her curls cascade behind her and onto her face. Her face is lifted upward as if she is raptured with joy and love. I sometimes look and wonder if her heart was speaking to angels in the sunshine, angels who knew how little time she would spend here with me. Her brother is on the right, looking lovingly toward me and my camera. His grin reflects a sense of well- being which I have not felt in many years. I revel every day in how perfect he is to me. The last semblance of hope in my broken world is how unbroken he is. He lives his life full- heartedly in Susanna’s sunshine while I fight tooth and nail for my willingness to live mine.

If there were to be some kind of explanation, why the world is full of so many living and breathing people whose brains do not suddenly bleed, would that make any difference to me? I do not know. What does make a difference is knowing that Susanna has gone somewhere and there will never be an end to her life and her story. I talk to her, aloud, every day. I tell her, just as I would if she had not died, that I love her and am proud of her. I tell her that I respect her journey and support the way she needed to leave her body and grow beyond. I cry when I say these things to her, because it hurts to let go of the people we love. It hurts whether they have brain aneurysms and die or not. Grief hurts because it is grief, but it is the price of love. Love is costly, but I am going to love anyway.