Loving Deep & Trusting the Process
Me & E — three weeks before he was born. March 2018.
“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. ”
To listen to the song: 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 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 his brain showed no seizure-like activity, and no major red flags emerged during the 90-minute 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 and 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 trauma 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 a dysregulation characterized by low 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 lucky enough to be on my A-game from past years, so I immediately noticed when Elliott's body was getting sick, and his Oxygen was dropping, and we were able to avoid the ER for the first time ever.
Needless to say, 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 camel’s back. Again.
When the initial shock and adrenaline wore off, weeks after that horrific day, my body had 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, and I felt 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 that is how things have gone for us historically. 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, and we are all so excited about the holidays and spending quality time together. But on the inside, there is a little feeling of desperation and 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 and welcome them, knowing that is where I am right now. I show up to my therapist’s chair, I take my medicine and I trust the process, grateful that I have a 'diagnosis' & my constant support around me.
I focus on being present with my kids and on the beauty that surrounds me every day. 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 every day, and their relationship is 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 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, and 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.
