Preparations

My head is spinning, thinking of all of the stuff we need to take care of before we head down to NY for Hannah's surgery.

I'm gathering lots of things: things to keep Hannah entertained and engaged while she's in the hospital and rehab, things to keep Isabelle and Sam out of trouble while they're at Grammie and Papa's, things to keep B and I sane while we spend long hours each day at H's bedside.

I'm also thinking a lot about how best to prepare the girls for the upcoming surgery and extended separation.  They have never been apart for more than a few hours.  I have no idea what that will be like for them.  We're in touch with the child life specialists at both the hospital and the rehab facility, and they've given us some suggestions of activities we can do with the girls to help them stay connected even while they're apart.  We have some books, a shared journal activity, Bare Heart buddies, and a few other ideas we will try. 

The child life folks have told us it's best not to tell the girls about the surgery until a few days before.  This has been hard for me, but it makes sense.  While I might need months to process, the girls still are not great about the concept of time and the more time goes by for them to "stew" about something, the more anxious they get, especially Hannah.  So I can see why a few days at most is about right.  We plan to head down to NY a few days before the surgery so we're thinking we'll talk to the girls about it a day or so before we leave our house.  So for now, mums the word and in the meantime I'm trying to figure out how we're going to have this conversation and what special thing(s) we can do with the girls before we leave for NY.

I want to document how Hannah is moving around now, so we can look back and see the changes post-SDR.  I find myself looking at her often, wondering what her body will be like after.  We've been so focused on making sure this is the right decision, being super conservative about our expectations, steeling ourselves for a long and tough couple of months post-surgery, that I haven't spent a lot of time dreaming about the possibilities.  I see how much Hannah is doing now, how far she's come, how much stronger she's gotten, how independent and motivated she is, and I wonder how this will change when she is not fighting against all of that high tone.  A little voice inside of me says it could be big, really big for her, and she will do amazing things.  But I won't listen too closely to that voice just yet because I don't want to have unreasonable expectations.  I'm sticking with my story for now: "This will greatly improve Hannah's quality of life, it will make her movements smoother and easier for her, and reduce the likelihood of many orthopedic surgeries in the future."  These are all good enough reasons to do this surgery. 

And even if we didn't do the surgery, Hannah will have a productive and fulfilling life.  She does not need this to be whole. She is already more than whole.

But in the words of the neurosurgeon, "this could really be a home run for her."

Batter up!