Riding the Wave

…Follow-up post from Processing the Cerebral Palsy Diagnosis – Initial Thoughts

The official diagnosis happened a couple of weeks ago.  I wallowed and felt depressed and cried and cried and cried and then I felt like I needed to put my big girl pants on and like it was going to be ok. We could do it. 

I read an encouraging book (One More Step by Bonner Paddock) about someone who has accomplished so much with cerebral palsy. I could now stomach the idea of starting to do some research and I started feeling like I had some energy to manage this.

Today, I got a call from our doctor on Elliott’s orthopedic team and I was more than encouraged.  He said things like;

“Nothing needs to happen immediately,” “You take time with your family to process this,” “No matter how minor this is, this is a hard diagnosis to receive,” “Never forget that you steer the ship and we are here to help you.” 

I needed to hear that.  All of that.  It felt good. It felt like he had my back and understood me. He confirmed my feelings that this is hard news, no matter where Elliott falls on the spectrum.

After that conversation I felt confident, I felt like I could start talking about it more openly with my extended family, I felt stronger. 

I sent a group text to my family with the diagnosis and a bit of what the last couple of weeks have looked like. As time went on throughout the day, I felt more and more like my heart was being ripped back open.  I felt weak and sad and scared all over again.  The responses from my family was overwhelmingly positive and supportive, but it made this whole thing real all over again. 

I know all the positives.  I know we can and will get through this.  I know Elliott will be fine in the long run.  I know that we have a team of doctors who are knowledgeable and want the best for him and family that will go to the ends of the earth for us. I know- I know- I know… But the feelings. The anxiety, the sadness, the fear and again, the exhaustion.  I am over all of that. I am tired from the wave of constant emotions.

There is a piece of me that doesn’t feel ready to tell others because it opens up this wound again like it can never heal, but in the same time, I think it is a necessary step for me in my processing to let others know what we are facing. It’s a push/pull and one i’m not sure how to navigate.  So here I am trying to write it out and figure it out myself.  I am hoping writing it out and processing through some of this will help me.

Here I am, riding the wave. 

I will follow our doctor’s advice and take time with our families and enjoy each other on our road trip. I know that with time, Nathan and I will come up with a plan of action for 2021 that we feel comfortable with.  We will take time to figure out how to manage what and how we communicate this with Elliott and make sure he always feels support. 

We can and WILL do this.  We can do hard things.  I just need to figure out how to find the strength and wade through the waves when they feel unbearably large, like they do often. 

Day at a time.

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