Inchstones and milestones

Every hero has a story to tell

Last Wednesday Aiden went in for his first Botox treatment. I spent the days leading up to it in a state of increasing anxiety. I’ve spent the days after it reeling from the unexpected magnitude of it. 

Because geez, was it a big deal. And geez, did I not see the emotional storm coming. 

A friend said to me that the first procedure after a diagnosis is the hardest, and I just thought yes. Something about it brings up all those initial emotional responses, and then a whole lot of new ones are heaped on for good measure. It’s not actually about the physical procedure at all – it’s about the diagnosis, and all the manifold consequences of that. 

The reality that Aiden has cerebral palsy slapped me through the face last Wednesday, in a way that was almost as shocking as seeing those MRI scan results. And because that was over a year ago, the shock has worn off and denial isn’t there to protect me anymore, so that reality hit my heart in a massively painful way. 

Mostly I felt sad. I felt sad for us, and for  the other CP kids and their families who we shared a ward and whiled away time with. And that sadness morphed and grew until it flattened me for a few days. I’ve done a lot of talking, a lot of journaling, a lot of crying. But all of that has helped, so while my heart is still heavy, it’s weight has shifted somewhat to a more manageable place. 

As for the actual procedure, it went smoothly. Aiden has been an absolute trooper about the plaster casts and is handling them brilliantly. He only really gets upset at bath time when he has to forgo his daily splash. He wants to walk everywhere (with assistance obviously) – I think because his ankles are so secure in the casts so he can step with confidence. Tonight he even used his walker independently for the first time! On Monday his casts come off and on Tuesday he’ll get his AFOs fitted. I am so proud of him. 

When I was dressing Aidy on the day of his treatment, we picked out an Avengers t-shirt he was given for his birthday. And the slogan on it says, ‘Every hero has a story to tell.’ It seemed appropriate – these struggles, these victories are all part of his story. And I hoped on some level it would help him be brave. I just didn’t realize I would need so much bravery too. 


4 thoughts on “Every hero has a story to tell

  1. And he has the sweetest nature, yet is assertive about his needs. This newfound independence is going to take him far and I’m so happy to be a part of that journey. Your superhero is welcome here any time ❤


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