As much as I really like this doctor, the news she delivers is always tough to swallow. It's not unbelievable, it's just always kind of bad news. First it was the bipolar diagnosis, then the upgrade to bipolar one and then the upgrade to bipolar mixed with some other serious mental illness all to be mixed in and not replaced by the autism, tourettes, ADD, anxiety disorder and so on. We finally seem to have my son's latest "episode" under control. He is on three different meds and for the last week symptoms have gone way way down. She says he is not "stable" he is "heavily medicated" and if we kept him at this level of medication it would/could cause harm. So, we have to lighten up on some meds. Her explanation is that we need to find the "sweet spot" with his medicine cocktail to where he is having low symptoms that he can manage or learn to manage but not so medicated that it could harm him or dull him too much. We are taking out half of one of the meds. We are also switching the timing of when he takes two of the meds. All of this adjustment shall begin tomorrow.
On the medication issue, I am glad to lighten up on meds but I am terrified of setting off another spiral. When I talked frankly about this with the doc she said that she can guarantee that because of his age and the early onset of his mental illness there will definitely be other spirals and episodes. I asked her when I can breathe out and know that my son is somewhat stable. Her answer...are you ready...by around 30. I guffawed out loud. WHAT?!?! Just a reminder...currently he is 15. WHAT?!?! I gathered myself and asked her when we can expect him to somewhat stabilize-just a little-relax into his meds a bit, stop hiding the knives and worrying about suicide. According to her, we can bring the knives out again but never stop worrying, being on alert and communicating with him as openly as possible. She says he is still in very early stages of treatment and adjusting meds can be a rough road and even when we get it all adjusted and he seems fine, it will change, it will get worse. Due to the true nature of his diagnosis and his age of onset she says he will get worse. Not good news.
So then I go later to the family therapist who has been more of a "you have a kid with mental illness now" coach. He told me that I need to stop acting as if this is a short term crisis and begin shifting and adjusting into a space of chronic management. I got the "you need to take care of you" speech which is valid and all but still blech. I told him that I am not sure how to move out of crisis mode when it feels like the crisis is not over, it keeps unfolding and the news just keeps sucking more and more every day. I am not even sure how deep this hole will go, how can I plan a strategy to get out of it. His response was that I may not ever get out of this hole, it might keep getting deeper and deeper for awhile. I need to learn to take time to feel what is happening and "let down" instead of just pushing through all the time. It is his philosophy that if I do not take time to do this I will not be able to be strong enough to manage my family well.
Well crap. He's probably right but I don't like it. I certainly don't want to take time to "feel". BLECH. This feeling stuff sucks! Who wants to take time and feel what it is like to realize that your son will spend a life time battling darkness and demons. Who wants to take time to sit with the suffering he feels and his CHRONIC condition. Who in the HELL wants to ponder the possibilities, the fears, the alternate scenarios. I'd much rather push through and find the bottom of the hole, find answers, analyze and assess the damage and figure out how to repair it. I must adjust. I find myself so much less tolerant then I used to be. I find myself wanting to curse at traffic and unable to listen to the news for the reign of stupidity that surrounds our culture. I find myself wanting to punch other people for their self centered arrogance insensitive nature and wanting to cut off anybody who does not want to take time to see reality, to see my family and my son for how amazing he is and will always be but instead sees his diagnosis with fear based thinking.
I know that my son is amazing. I know he CAN aw and amaze doctors and that we blew past all expectations of his autism diagnosis. I know that doctors do not know everything and that each individual is different. I know all that and still I am struggling to find hope. Not faith...hope. I do not want those inspirational quote crap sayings that are hung in doctors offices and posted all over feel good websites. BLECH. I want real tangible hope. I want to know how deep this hole goes. I want to know what am I grappling with and how can I help save my son. How can I even set up temporary camp in the hole if we are still falling? How do I relax into the fall and find grace? I am not sure I am actually ready to adjust to this new reality.
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