I Have Marfan Syndrome

Thursday, 11 June 2009 09:15

I would really have preferred to have this happen before having kids. Unfortunately, we don't really get to plan these things do we?

First - I don't like that my daughter has to see me like this, and that she has to be told that daddy can't do certain things with her. She's 4, so she's going to remember this. Fortunately, my mother-in-law and my mother are here, so they take some of the burden of entertaining my daughter and playing with her off of my hands. But there's still the grey area - I'm not dead, and I can talk, and walk around, so when do I have to say no, and when do they have to keep her away from me.

And, I don't like that they have to keep her "away from me" at times. Because I'm only about 2 weeks out of surgery, I still need long naps, so she has to be kept from waking me up; and then there's the times that the physical therapist comes over, my 4 year old daughter can't be on top of us while the therapist is trying to move my arm a certain way.

They have to keep reminding her that daddy is sick. And I can see that she's starting to take on the burden of caring for me, which is no good, because she's only 4 and should not have a weight like that on her shoulders.

Second - I have noticed that I lose all my patience in the afternoons right now. And I have to keep repeating to myself "right now", so that I don't start beating myself up about it too much. I have no patience to play the simplest of games with my daughter. I don't have the patience to pretend that the wood floor is water and we should all be swimming.

I really don't like that I don't have the patience, because she's just being a 4 year old playing in a healthy calm manner, and she should be rewarded for that.

But, I'm getting better right?

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