Lack of Closure

For those outside of immediate family, who don't already know. We had an appointment yesterday to discuss Holly's cause of death. It wasn't Edwards Syndrome (which was the diagnosis we had expected, and "come to terms with"). We won't have definite answers until further levels of genetic testing, but it appears to be a rare congenital muscular myopathy, which in many ways, is the worst possible news because it means we still don't have the closure we needed. There will be another, potentially long wait for answers, and those answers may have wider implications for immediate family. It is a major setback, and I do wonder (foolishly, perhaps) just how many "worst-case-scenarios" life intends to throw at me.

When Holly first died, I was obviously incredibly sad for her loss, but grief I could cope with. I felt peaceful, I felt acceptance. I felt like her death was some sort of spiritual enlightenment, that there was a reason behind it - part of a bigger picture that I couldn’t yet understand, but would eventually become clear to me. I felt she served a purpose. I dared to believe that my life, and those around us would somehow be better because she had so briefly been a part of it.

Maybe it was shock. Maybe it was oxytocin. I don’t know, but in those early days I felt like I was functioning on some higher level of consciousness. In the weeks that followed, I felt productive and positive. In spite of the awfulness of Holly’s death, I was proud of her funeral. I was proud of the beautiful death we were able to give her. I was proud of my ability to parent my living son, despite the family’s loss. I was proud to be Holly’s Mummy, and of keeping her memory alive through my blog and my writing…

As time has gone on, it has become impossible to maintain that sense of peace, of acceptance, or pride. Without answers, without closure, I have tried so hard to remain positive and keep going, but some days I don’t even know who I am any more. In recent weeks, I have dealt with setbacks, and lack of certainty, PTSD, memory-loss, and debilitating panic attacks. It has been a difficult journey, and a long wait for answers, culminating in yesterday's news, which was not only unexpected, but it was my worst-case-scenario, and triggered a series of panic attacks like nothing I have ever experienced before. (There was a time, back in my former-life, when I didn't even believe that panic attacks were a "real thing"... oh, the irony!). The likelihood is that Holly's condition was genetically inherited, not the random strike of bad-luck we thought we were dealing with (although that in itself was hard to accept, but at least the story had an ending). Instead of closure, a vast number of chapters have been added to this already epic tragedy, and suddenly the novel has become more widely distributed because from now on, every potential outcome has wider repercussions. Specifically, I cannot rest until any risk to my son's health has been categorically ruled out.

We have been told by multiple specialists, that my boy is fine. That I shouldn’t worry. But at every step of this impossible journey, it has defied all odds to create the worst possible case scenario. So how, at this point, am I supposed to remain positive and convince myself that he is safe?

I am a factual person, who takes comfort from knowledge, and struggles with uncertainty. I need answers. In the meantime, I don't mind admitting, this has been a major blow, and I am struggling.