Shunt Revision (Day 156)

think that I am in shock and I know that the adrenaline (or whatever denial laced mental illness that is often called resilience, but is not sane enough to be resilience), will drop off soon and I’ll be left feeling whatever it is I am going to feel.

Note: I am not looking forward to that. 

To catch you up: we suspected Lily’s shunt might be failing. Then we had a normal busy week. Then she vomited. Then we went to the ER. Her shunt was failing. And then her shunt was revised.

And now we are home. 

This whole process of failure-revision-failure-revision is really hard. I know hard is not the most descriptive word; but I actually think hard was made for situations like this. 

This is an unmovable stone just lobbed right in the middle of Lily’s path. Some days, we can go around it. Other days, we can go over it. But we can never push that hard stone entirely out of the way. The shunt and its successes and failures and revisions are with Lily forever. 

I have a lot of insecurity and self doubt when it comes to handling all of this. I have to constantly remind myself that the work of over and around is not something I am alone in. I have to always take the time to list the things I know to be true, to avoid spiraling into madness. And I have to give myself grace:  because this is damn hard.

Lily pointed out to me tonight that people will tell her she is a warrior and a fighter and that she’ll be fine; but they fail to acknowledge that maybe she never wanted to a warrior or a fighter and that maybe she isn’t fine.

For the record, she is the smartest, wisest person I know. 

Tonight, we count our blessings and are grateful for the beautiful community that surrounds us, for balloons from teammates, for neighbors who take our children in with a moments notice and friends who are at the ready to take them too, for our wise daughter, who wishes for nothing more than to be a regular, ordinary kid and  for shunt revisions that give us more days, more laughs and more chances.