I'd like to say that I walked out of that office like a mother tiger ready to fight for her cub to the death, but that's not what happened. I had to grieve first...grieve for the life that my little boy wasn't going to get. Grieve for the lives that my husband and I would now have.
I walked out totally and competely numb. In fact, the days that followed are somewhat of a blur. I went to work, I went home, I might have eaten, I might have slept. I mostly just shut down. In retrospect, I'm sure this was my psyche defending me against a complete mental breakdown. I literally could not handle it the first few days. I looked at my son blankly for those days, at a complete loss for even the first clue as to where to begin.
I remember going to work and being like a zombie. People were asking me questions about data and QA stuff...were they kidding? I wanted to scream, "WHO CARES?! The world is falling apart, and you're asking me about a signal-to-noise ratio??" I don't even know if I responded to those questions that, in those moments, struck me as completely asenine. I vaguely remember sitting in my office, feeling a wet substance coming from my eyes but not being all together sure what was going on. Like I said, I'm really not sure what I did or didn't do in those first several days. It scares me to think that I was ever THAT checked out of life, but I think I had to do that in order to stay together enough in the long run to be effective in the many battles that were yet to come.
I moved from the initial "denial" phase of my grief into "anger" sometime within a week of that appointment. I was livid, and that anger was, initially, very specific. I hated God. If there was a benevolent god, how could he have let this happen? Even if this were some kind of punishment for me and/or my husband, why did he have to bring my precious baby into it? What kind of a being would DO this to a child?? If that's god, then I want no part of him. None. Mostly, though, that's when I began to entertain the idea that there was no god.
And if there WAS no god, then I needed to find another person to blame. How could science not be advanced enough to have no cure or even proven treatment for this? No, I can't be mad at lack of technological advancement. Too obscure and non-specific. How could insurance companies not pay for the treatment that WAS available (more on that next time)? Upsetting and disappointing, yes, but not really a CAUSE of the issue. What was the CAUSE? The scientist in me was horrified that doctors really didn't know. However, based on the fact that my nephew also had it, there was a logical conclusion to draw. The cause was ME. MY genes. Who I fundamentally am. I had acted as a carrier for this disorder, and now my son would pay for this for the rest of his life. Now my anger was focused on myself. Scott and I had tried to get pregnant for 18 months before Sammy was conceived...maybe that was a sign that we just shouldn't be having kids. Why was I so selfish? This was my fault. OMG...is that how Scott saw it, too? That his son would have lifelong struggles simply because he had the misfortune of having me as a mother? Would I lose them both? I wanted to die. Literally.
I suppose that made the "bargaining" phase a bit easier. Although I still wasn't all together sure that there was a god, I began the bargaining process. "If you would just save my son from this - make him normal - I would gladly die for it." "If you would just help Sammy get through this, you can have whatever you want. I'll preach for you. I'll sing your praises. Please." "If you would just make Sammy OK, then you can send my soul into eternal damnation. He's all that matters to me. Please." Countless similar pleas were made, none of which helped. I felt pretty foolish...I mean, if there was a god, he obviously didn't care about me or my family at all, so why would he help now?...but it was like I had to try.
The "depression" phase that came after this hit like a ton of bricks. As I said, I blamed myself anyway. With the realization that no supreme being was going to give me a "do over" and allow me to awaken from this nightmare, I was unbelievably heartbroken. I really just wanted this to not be true, but it was. It was the saddest period of my life to date. Knowing that your baby will struggle for every little accomplishment is almost too much to bear. Almost.
I couldn't let the depression take over, not now, when my little boy needed me to fight for him. I got on the appropriate medications and was finally able to deal with the challenges that were coming. I had reached "acceptance."
What people don't often tell you about autism is that you go through this cycle of grieving repeatedly. For me, each time I go through this, the "acceptance" comes sooner, as there's no use in wallowing in your own grief, and yet, I know that another cycle is coming sooner or later. Eventually, this situation will anger me beyond belief, I will beg for a way out, I won't get it, and then I'll come back to accepting it. To see what you are grieving every day is a very strange phenomenon. You can't choose to shelve what you see every day.
So now I was ready to fight. Fight for my family and my son. I had no idea how hard the days, months, and years to come would be, but I was about to find out.
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