Loving Deep & Trusting the Process

Love is deep as the road is long
And moves my feet to carry on
Beats my heart when you are gone
Love is deep as the road is long

Nobody knows how the story ends
Live the day, do what you can
This is only where it began
Nobody knows how the story ends
Nobody knows how the story ends
Nobody Knows: Lumineers

Love is deep as the road is long….

It has been a long fall. Brief medical update for you since the seizure in September. We have now had the MRI & EEG. Both results ended up with great news. The MRI had not changed since birth, confirming that the seizure did not have a negative impact on his brain. The EEG came back NORMAL! This means that his brain did not show any seizure-like activity, nor were there any big red flags that came up in the 90 minute duration of his test. We have a meeting with our neurologist in mid-December to fully understand what all of that means and we will make a more comprehensive plan of action, moving forward. But, for now, this is a huge win for us.

I do however, want to bring to attention some mental health struggles that I have faced in the midst of all of this newfound medical exploration this fall. From the beginning of this blogging journey, I promised myself & you all that I would keep it real, so here I am.

To put it simply, my body has more or less shut down on me from the consistent state of traumas for the last 4.5 years. I have been told by two different therapists that my body is currently in a state of ‘Hypoarousal.’

Hypoarousal is defined as: Dysregulation characterized by a low state of physiological arousal, emotional numbing, restricted functioning, social withdrawal and a disconnect between body and feelings. Or another way to call it, freeze mode.

Over the course of almost 5 years we have witnessed a handful of minor traumas in the form of breathing struggles, 911 calls & hospitalizations with Elliott, some clearly scarier than others. None of it comes without impact though, so for example, a typical RSV season holds with it some PTSD for me. There has never been a year when it hasn’t deeply impacted our family. This season, I was luckily on my A game enough from the past years, that I immediately noticed when Elliott’s body was getting sick and his Oxygen was dropping so we were able to avoid the ER for the first time, ever.

Needless to say, that all of these ‘smaller’ instances of trauma over the years have held weight in my mind and my heart and were packaged up nicely with a big bow in the form of a Grand Mal seizure. In other words, the seizure was the straw that broke the camels back.

When the initial shock and adrenaline wore off, weeks after that horrific day, my body has gone into what feels pretty numb to anything medical related.

The first and biggest red flag for me sensing I was off was finding out that Elliott’s EEG came back completely normal. I was emotionless & felt that those results couldn’t be right.

Out of self preservation, I have become skeptical of good news.

Turns out, I am constantly waiting for the next ball to drop, because historically, that is how things have gone for us. So why would this current situation be any different? My brain tells me there HAS to be a reason for the seizure and the reason can’t be good. And that thought alone, shuts me down. My body is TIRED of always being on such high alert. It makes me feel like instead of fighting this beast I just want to lie down in front of it.

So, what do I do about hypoarousal? How do I get out of it? The resounding answer I am receiving is, I don’t. At least right away. I sit in it. I need to be patient & I need to give myself grace. (Ugh)

On the day to day, everything is good. I am happy & we are all so excited about the holidays and spending quality time together. But on the inside there is a little feeling of desperation & fear knowing that this is NOT in my wheelhouse to feel numbness when it comes to certain things, especially Elliott and his medical needs.

So for now, I embrace the feelings & welcome them, knowing that is where I am right now. I show up to my therapists chair, I take my medicine & I trust the process, grateful that I have a ‘diagnosis’ & my constant support around me.

I focus on being present with my kids and all the beauty that surrounds me daily. Just this week, I watched Elliott overcome his fear of Santa as he climbed right up into his lap and asked for books for Christmas. I watch him and his sister become closer everyday and their relationship turning into something magical. I get my butt kicked by him at UNO at least a dozen times a day and I take 10 minutes to say goodbye to him whenever I go somewhere because he wants 5 hugs, 5 kisses, 5 high fives & 5 fist bumps (HA!). And finally, his laugh. His ever loving, contagious, laugh that stops anyone in their tracks. It makes me fall more and more in love with him every time I hear it. He is a truly spectacular human & I’m so glad he’s mine.

Oh and I also count down the minutes to my NYC trip with the hubs -without kids- to celebrate our 10th Anniversary 😉

Nobody knows how the story ends. Live the day, do what you can.