Cerebral Palsy · Emotional conundrums

Relief versus reality

One of the things I’ve been struggling with is the tension between relief that Aiden only suffers from mild CP, and the difficulties that the reality of that brings. It’s very hard to articulate and I’ve been wrestling with it recently, to the point where it’s coloring most of my thinking and leaving me in a constant state of mild anxiety. 

On the one hand, I am immeasurably grateful that Aiden’s condition isn’t worse than it is. The extent of the stroke damage could easily have left him as a level 4 or 5 case, instead he is only a level 1. (The conclusion by the experts on this is that it’s because he had the stroke very early in the pregnancy.) Strangely, sometimes I actually feel anxious when I consider how close we came to dealing with a much more severe situation – as if the near miss just means disaster is hovering out there, waiting for me to relax before it pounces. 

This knowledge of how much worse it could have been, also means that I feel guilty a lot. I feel guilty when I find it hard, when I get impatient with the pace of progress , when the day weighs heavy on my shoulders, when the routine bores me, when the limitations close in. It’s as if I feel like I don’t have the right to feel like it’s struggle. 

I’m not sure where this comes from. There’s plenty of things in my life that could be a lot worse, but I don’t feel paralyzed with guilt over those. By necessity we all need to deal with things relatively, and if something in our lives is hard for us, then it’s hard!

The reality is that Aiden has a loss of function and life for him and with him is harder than it is for the average almost-two-year old. Maybe part of struggling to allow myself to regonize this is because the difficulty isn’t one big obvious thing, but rather a myriad of small struggles. It’s the amount of carrying I still need to do. It’s the level of involvement I need to have to enable him to play at a level appropriate for his age. I find myself analyzing, evaluating, remembering Cameron at the same age, constantly judging the situation in comparison to the only other experience with a 21 month old that I have. I know this is a stupid, pointless exercise; that I shouldn’t compare them. But it’s almost as if I need to, to allow myself to say, ‘It’s okay to find this hard. Because it is hard. It’s not the same as with Cam.’ It’s as if I have to justify it to myself. 

I wonder if this doesn’t stem from the fact that there is so much emphasis on how grateful I should be. I fully appreciate and recognize the power of gratitude. And I know people only mean well when they focus on the positives. But sometimes that leaves me feeling that there’s a lack of recognition for the loss that Aiden has suffered, and the consequent difficulties we are left to deal with. I find it easier to be grateful and positive when people aren’t expecting me to be. 

This all feels very back to front and upside down, and I’m sure you can see why I’m driving myself slowly mad with these thoughts. Perhaps the thing to do is to recognize that this is just another incidence of that tension I need to learn to navigate … and to bring this up at my next session with my counsellor! 


3 thoughts on “Relief versus reality

  1. you (all 4 of you) have suffered a loss Luce and it’s ok to acknowledge that and ‘mourn’ it. Love your courage and your brave heart. You’re not alone, God is with you.


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