Throughout each day, I come up with several ideas of what to write about next in this collection of thoughts and feelings. Most of the time, the inspiration leaves me as quick as it came, and I am left still wondering what I could possibly say that would be interesting for others to read, and therapeutic for me to document. It's not that I am trying to convince myself that my words speak truth, but more that in writing them down, I find a sense of clarity and relief. Regardless, this week I am having a hard time deciding what to say, so I decided to take a moment and talk about guilt. It's not a feeling I am particularly fond of, and I actually find it quite useless, but as a mother of a child who was at one time developing normally, then took a drastic turn... it is a feeling I have unfortunately had to deal with as I search for answers, reasons, treatments, and serenity.
It sounds cliche, but if you haven't lost a child in some sense of the word, you may not be able to comprehend the level of helplessness and grief that envelops your entire being during that process. "Desperate" and "lost" doesn't even begin to describe how out of control your world feels, and part of the process is determining what you could have possibly done differently to have determined an alternate outcome. I can't tell you how many times I have said the words... "if I only knew then what I know now" or how Avery's body and environment created a "perfect storm for neurological damage"... but you can't go back. So why bother torturing yourself with the impossible. BUT she WAS normal... and now she's not and will never be... so guilt was an inevitable evil that I had to overcome to get to a place of peace. A place where I am happy to report that I am getting closer to everyday.
Maybe I have written in this blog too much about the need to stop projecting and stop dwelling on the past and to just live for today. To relish each blissful moment you have with your loved ones and to take it all as it comes. But I have probably written about it so much because I need to hear it. I need to live it. I need to share it so you can help me. I don't know a single mother on this earth who doesn't feel a sense of guilt from time to time. It is natural to want the best for our children, and we are all flawed and imperfect, so we all fall short from time to time. But it doesn't mean we can't learn from it, be aware of the feeling and try to do better.
On Sunday evening I was fortunate to be surrounded by an amazing group of women. I invited almost everyone I know who has a child with special needs to come to my home and let loose for a bit. There was wine, laughter, sharing of resources, a few tears and mostly a well deserved break from the grind. Between various therapies, treatments, doctors visits and so on... most of us don't have time to come together, free from judgement and critique to support and love each other. I am glad we made time though. And I am delighted to have gotten to know some other mom's in my boat a little better. Collectively, I think we all need to give ourselves a break, even if just for a few moments. A break from stress, a break from sadness, a break from anxiety, and a break from guilt.
It's really ironic because though I wouldn't wish Autism, mastocytosis, or for that matter any delay or disability on anyone's child, I also am learning to really value and appreciate the lessons, relationships, and eminence that having such an experience has enabled me to procure. I am led to continue to put faith in the conviction that Avery's life, just as it is, is changing me, and those around me, for the better. It astounds me that such a little, unknowing, unperceiving little person can have such an impact. How fortuitous for me that I get to be her mother, and I get to see life, in all it's glory, as I am living it.