We had our physio assessment with our community physio today.
Assessments and appointment days are hard. They also kind of catch me off guard.
L was lovely. She was so good with Bennett and she was tender with me, diverting Bennett’s attention the one time my emotions kind of got the best of me and my eyes began to leak.
I am in this new stage of unpacking right now. I know that the only reason we are here at all is because of me. Because I thought something wasn’t right. Because I pushed for more answers. It’s a strange thing. I feel both proud and embarrassed about this. I felt in my gut something wasn’t right, but anxiety and insecurity have this way of making you second guess yourself. Maybe I am being a helicopter mom, I thought. Maybe I just wish he was better at sports. Maybe it’s all in my head.
When we went to Calgary to see the neurologist again, 18 months after our first visit where we had left completely reassured he was totally typical, I expected the same answer; "I don't know what this is but I think it will go away on it's own". When Dr. P did his exam the second time and agreed, something was not right, and was suspicious that that “something” might be a type of muscular dystrophy suddenly my heart wanted to switch sides. For weeks, I'd go back and forth. Wishing that he was just the kid that is a bit clumsy. Wishing I never had that first feeling. His confirmation that something is abnormal doesn’t feel good at all, and it sometimes pushes me into denial and defensiveness. I felt this a bit with L at physio too, wanting her to almost tell me point blank, "no Chelsea, this can’t just be low end of normal, something is very wrong". The odd thing is, I think they are saying that, it's just so hard to actually take it in. I want to be wrong. I want to rewind. I want this all to be one big bad dream that I get to wake up from. I want them to say, "this lady has health anxiety, let's get her some help". Let it be that instead.
I get through those appointments, primarily wearing my professional hat. I try to compartmentalize. I show up and advocate and take all the info in. I ask good questions and I push hard for answers. I am proud of my ability to mostly do that. But the toll of it is heavy. I feel gutted when we leave. I can’t sleep that night. Just going through all the little things. The possibilities. Somewhat to try to “be prepared”, mostly just to grieve.
It is not fair.
He does not deserve this.
He is so perfect and I want his life to be simple and for there to be ease.
The question will not let up in my mind.
Can we keep living here?
Will the snow be an issue?
Will he be protected by his buddies or will a small town make him feel alone, with few others looking and experiencing the world the same way he will?
Should we have moved in the first place?
Will we have access to good care?
Am I strong enough to guide him?
Will others be kind to him?
Will he ever have a partner?
Will he ever experience intimate moments with someone?
Will someone love him fully and see past any physical limitations?
Will he drive a car?
Will his brother protect him or feel this as a burden?
Will our marriage make it through?
What if something happened to one of us?
Will anyone still agree to be his guardian?
Will Nixon end up with this too?
How long will he be able to play hockey or ski?
Should we travel as much as we can now? It could be so much harder down the road.
It is just this constant reel of painful and torturous questions.
There are so many unknowns.
So, this is just to say, appointment days are hard. They open the lid back up. They force me out of denial and into the reality once again that this is happening. That I didn’t just imagine it. That it’s not a bad dream.
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