Rolling with the Punches

Yesterday, Oliver hit me so hard that he gave me a fat lip and a bruise. This certainly isn’t the first time his flailing limbs have come into contact with my face but it was so hard this time that it made me cry… partially due to the pain, but mostly because it was one of those moments where the weight of our journey hit heavily in my heart. 

I know I’ve written before about the transient nature of grief and I will probably continue to write about it for many years to come because it will always be a part of our story. 

Seven years in, I don’t feel sadness about Oliver’s injury very often anymore. The many things that were traumatic at the start of our journey, are now simply woven into the fabric of our daily life.  But this first hard back-hand to the face…this is a new addition. And so it brings forth that old friend grief. 

For years I’ve read about other moms who’ve ruptured discs in their back while carrying their dystonic children, been punched in the face or unwittingly kicked in the gut during a diaper change. This stuff is par for the course for a dystonia mom. And now it’s my turn to experience it all.

We had high hopes for the baclofen pump that was placed two months ago. We imagined that it would be an answer to our dystonia prayers. But that’s not how it’s turning out. Friday, Oliver and I drove back to Seattle, a trip we’ve taken too often since the surgery, to try and figure out why he is in so much pain and why the pump is not controlling his tone or dystonia the way it was supposed to.

The rehab Dr told us that this is not how children normally respond to this intervention. She said that the increase in his seizures and the over-sedation after titration appointments followed by periods of dystonic storming are not normal and that overall she felt he was not responding to the pump well. Obviously that is true. 

She stayed and talked with us for almost 2 hours, took extensive notes and I finally felt truly heard. This was a great relief after the middle of the night phone calls I have, in desperation, been making to the on-call doctors at the hospital lately, as I sit helplessly next to my child who is in pain. 

Things have been rough for Oliver since the surgery. Not much has gone as expected. And we are now facing the possibility that we may have to do surgery again to remove the pump… Another failed attempt at controlling the agony of dystonia.

I honestly can’t even think about putting him through another surgery right now and being back at square one with managing his dystonia. So I’m doing my best to stay present and take this thing one step at a time. 

We’re hoping that a decrease in his Baclofen dose (although NOT ideal for his tone control) will allow us to determine whether or not the pump is causing more side effects than benefits. From there we’ll then have to decide if it’s worth keeping in or not. 

So anyway, the last week has been A LOT. It continues to be A LOT. And I am definitely ready for Conrad to come back from his trip to California and provide some much needed back up, particularly for the middle of the night torture sessions Oliver and I have been enduring. 😭