Processing the Cerebral Palsy Diagnosis- Initial Thoughts

How Do I feel?

I keep saying life feels like a dumpster fire and that seems to be the only way to describe it.  I just saw a specialist who looked at Elliott and confirmed he has a mild case of cerebral palsy.

Nothing in my mind registered.  So….what’s the plan? 

The doctor tells me he wants to inject botox into Elliott’s leg, followed by a cast and then brace, followed by a possible surgery years down the line.  Ok- I have heard of all those options before, but it seemed like they were just that, options. Not that he needed ALL of it. You are telling me ALL of those things are needed? Even for a mild case? 

First punch to the gut. 

What’s our timeline? We are about to embark on a 6 week long road trip over the holidays. Doctor says all of this can wait until after our trip. Ok, great.  But slowly I start thinking about what needs to happen before the trip. 

More calls to insurance, more follow-up doctor appts, more more MORE…The quivery lip starts as I am sitting across from the doctor with Elliott on my lap. 

Second punch to the gut.

I hold it together for the rest of the appointment.  This has been par for the course the last two years–ebs and flows with different diagnoses and doctors appointments.  Sometimes it feels like we are coasting, and other times I just feel like Elliott (and subsequently me) are getting punched over and over again with new information and appointments breeding more appointments.  We are in the latter.  We have been since May and now its October. I am very, very tired. I am postpartum from having a second baby in August and I am toting her around to 90% of these appointments, during a damn pandemic.

The more I think about this particular appointment, this particular diagnosis– I feel weak.  I don’t feel like I have the reserves to handle it. I feel myself breaking.

Third punch to the gut.

I manage to get out the front door of the office, rip off my mask, try breathe in some fresh air and I completely lose it. I can’t stop crying and I can’t keep it together in front of Elliott– I hate that so much.  I hate crying in front of him and trying to reassure him that momma is ok. 

WTF just happened. 

There was no new information at that appointment so why am I unraveling so completely?  I call Nathan and can’t seem to fumble the appointment together in any sort of way that makes sense for him to understand through my hysteria.  What I remember about that conversation was that he asked if we needed to find a second opinion.

Fourth punch to the gut.

This doctor is the Second opinion.  He is the third opinion.  This doctor is THE doctor that everyone has been pointing us to and he is confirming what everyone else has already told me.  It feels final.  It feels like the official stamp in the ground of what needs to happen and I just feel the weight of it all at once without any way out. 

I hate this for Elliott. I hate it so much it makes me sick.  I want to be the one to wear the brace. I want to be the one who needs to go through all these appointments and hoops.  Not him. Why him?  I am so angry and sad and frustrated and just plain EXHAUSTED. Like cannot function, exhausted. 

This appointment was the straw that broke the camel’s back and I am not sure how to recover. I am not sure how to gain the strength to keep moving. To keep moving for our family, to keep moving forward for Elliott. 

**This post was taken directly out of my journal, written in real time**

…Thoughts continued in Riding the Wave