I very seldom have negative thoughts about Evie’s disabilities.

But today, I was feeling a little selfish.  I started thinking that it would be nice for Scott and I to start playing tennis again.

Then I remembered that I would have to move heaven and earth in order to make that happen on any sort of regular basis.

Then I started thinking that I would ALWAYS have to move heaven and earth for us to be able to do anything as a couple that doesn’t directly involve us directly interacting with the kids.

And it was a lot to swallow.

And I felt sad.  Not just for Scott and me.  But for Evie.

Then I really started feeling sad for Evie.  For the privacy and independence that she will never know.  Except in safety proof rooms–which is pretty much her bedroom.  Nothing but a bed and small dresser.

It is overwhelming to know that we will, every single day, for the rest of our lives have to carefully plan care for Evie.

I don’t trust her care to many people.  Not because I think people are untrustworthy.  But because her disabilities are so intense yet she has enough mobility and motor ability to put herself in very unsafe situations.  Quickly.  And it takes living with her day in and out to really understand how easily things can go from safe to dire in a matter of seconds.  And the older and bigger she gets, the harder it becomes to keep her safe.

I worry about these things.  I admit it.

I worry that when Scott and I are unable to care for Evelyn any longer, we will leave that massive responsibility to Maxine.  And as much as I have the expectation that Maxine will do so, I know that it isn’t exactly fair.

When I think about all of the long term implications of caring for Evelyn, moping about not being able to play tennis without some finagling embarrasses me.

And I feel so angry with myself for thinking thoughts that seem at odds with loving Evie just the way she is. Thoughts that seem to disrespect Evie.

And I shouldn’t even write this…share this, except that I hear the self righteousness in my voice and feel it in my bones when I talk about loving Evie exactly as Evie is.  I stiffen when anyone implies that my life is hard or that being a mother to a child with a disability is anything less than perfect.

I wouldn’t change anything about Evie.  Still.  Always.  I love everything about her.  But I confess, thinking long term is overwhelming me at the moment.  Hopefully, tomorrow I will be back in the place of peace and calm when it comes to Evie because I really don’t like myself very much at the moment.

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