Last weekend we took Evie and Max up to SandBar State Park. Maxine was walking around with Scott and I was hanging out with Evie. Because of the short depth of the water, I was able to give Evie all of the independence that she craves in the water.

She swam/crawled around non stop. Putting her face in the water for periods of time much longer than I was comfortable.  I hope Evie is reincarnated as a fish because she comes alive in the water.

Suddenly, she sat up and looked at me in the eyes and grinned.

It was one of those moments that brought my heart pitter pattering high up into my chest.  My breath caught in that way it does…

Love explosion.  A big one.  Maybe the biggest ever.

Her smile said, “Share the total awesomeness of my pure and unadulterated joy with me mama!”

And I did.

And whenever I think about that moment, I feel the joy.

And I think about it often.  And I grin.

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.

Maxine Becoming

Maxine is changing.  The little baby is long gone and I see the toddler slipping away slowly each day yielding to the little girl that she is actively becoming.

Becoming a chatty little person who fills my days and heart with laughter.

Becoming possessive.  Very possessive.  I don’t think that she has identified a single thing that isn’t, “mine” (hers).  This includes the basement wall.

Becoming empathetic and kind.  This softens the blow that elapsing time strikes.  She is developing an understanding of her sister’s differences.  She is starting to forgive having her items snatched away.  She enjoys helping Evie–delivering food to her.  And sometimes letting Evie know how best to achieve her goals.  Evie wanted something to eat several weeks ago.  Daddy said, “no.”  With a knowing nod, Maxine told Evie, “Ask Mama Beth.”

Becoming a comedian.  She will do just about anything for a laugh.  She has an incredible ability to sniff out a suppressed laugh or smile.  She responds by repeatedly performing whatever act I am trying not to laugh at.

Becoming a parrot.  Yeah, we have to be careful of that one as her personality is colorful enough without the matching language.

Becoming imaginative.  We pretend to be birds and she really believes that we can fly around in the sky.  She tells me how she will snatch daddy from the sky when he is in a plane.  When I ask how, she responds, “reach up there” or “climb up there.”

Becoming polite.  “Skeemees” (excuse me), “sossy” (sorry), “kankoo” (thank you) are all automatic and regular parts of her vocabulary.

Becoming loving.  My favorite.  Kisses and hugs.  And expressions of love.  And I can tell she gets it.

I mourn each passing day and embrace all that the next will bring.  What else can a mother do?