Dear Chickadee,

You probably heard Daddy and I talking on the way down to the Childrens' Hospital.  Daddy was discouraged.  Mommy was exhausted and scared.

We talked about how sometimes people tell us, "God gave you this because you're strong enough to handle it".  You heard us laughing.

I told Daddy, "I feel like the past six months have been the hardest ever.  But the thing is, I feel like I've been able to say that for the past three years."  Daddy let it hang in the air, ripening like a bulging piece of fruit.

"Yeah."  He said rubbing the back of his neck, "That's the thing.  It keeps getting worse and worse."

But instead of crying we did something entirely different.  After a pause, we looked at each other and busted up laughing.  It felt so good to laugh.

We stayed in the hospital.

And stayed and stayed.  Your poor little tummy was on strike.  Apparently six weeks of barely getting over one thing before starting into something else was not in the contract.

I didn't know that tummies could just re-negotiate that way.

I kinda thought they were indebted for life, you know because you're keeping it alive and stuff.  But, it turns out that stomachs can do pretty much anything they want.  Including holding you hostage.  With a colon that only works because of the play-doh effect, a small intestine refusing to digest/move food/rid itself of bacteria can have dangerous results.  But don't worry baby.  We talked that mean bastard ileus down.

When I was driving home I thought back to that conversation we had on the way to the hospital.  How it ended with the fact that we don't want what somebody else has.  We don't want anybody else.  We want YOU.  Rett Syndrome is just a footnote to our baby girl that sometimes steals the spotlight.  The real story is and always has been the amazing and brave girl fighting every day.

In the quiet of our minivan, I wanted to renew my vows.  I wished I could wake you up, pull over, and make you understand.

I will be there for you.
I will always love you.
I will do my best to have realistic expectations.
I will push myself, and I will push you.
I will love myself and I will love you when we both fail realistic expectations.

I don't care how long it takes.
I don't care how far we have to go.

We will have a good quality of life.
We will find a way to make things work.
We will always evolve and continue to adapt.

Because, I want you to always know:

you will always be worth it.

I love you for always,

Mama

Be sure to check out the photo journey of the hospital visit here.