Why share now?
I struggled with whether or not we share something so personal in such a public way. But then I thought about Nate’s favorite musical, Hamilton. Who tells his story? I’m going to be the Eliza and tell his story. He wants people to know and creating a blog seemed the best way to share news about Nate’s prognosis on a broader scale. We have gotten to spend a lot of time talking about his journey and how he wants to share what he’s going through to help other kids. Personally, telling his story feels like my calling right now. Something I’m meant to do for him, for me, for others who could relate or benefit from hearing it.
Writing has always been my way of releasing, so sharing my emotions and thoughts on the page is very therapeutic. I’ve been writing all along through this journey in a personal journal to help me process everything that’s been going on with Nate. While I’ll share details of his diagnosis, procedures and treatments, please know that I’m not a doctor, I’m a Mom doing her best to resolve these things in my head and share them in a way that is relatable to a lay person. The emotion you’ll see in the posts is raw and real, and while gratefully Nate’s prognosis is excellent, there is still a fear and grief that underlies a lot of this writing. But also know that part of my personality always has been to find the positive from the negative, so in true form, I think you’ll see that much of the heavy stuff I attempt to balance with lightness.
This also seemed the easiest and best way to relay Nate’s progress without having to repeat it to various people. It’s purely selfish…we are so fortunate to have so many people who love and care about our family and our Nate, but having multiple go-rounds of expounding the details of his procedures has been hard on our mental health. Every time I give someone an update or share Nate’s full diagnosis, which took a few visits and tests to get to, I relive the moment I was told the full extent of what causes his seizures. I can honestly say, that moment is the worst moment of my existence. It hurts and it’s hard and while I know I’ll grow as a person from this, it doesn’t make it any easier to go through. Nothing worthwhile in life comes from easy journeys.
I am writing here is to put a face to this diagnosis. After getting Nate’s official diagnosis, I went down the rabbit hole that is the internet, researching and desperately searching for a first-hand experience of someone who has gone through this diagnosis. I found that there are virtually no sources that relay the human experience of this diagnosis. There are many studies and empirical, data-driven places to get information on gangliogliomas and epilepsy in adolescent children, but they are very scientific. They don’t speak the emotions, the conversations, and the humanity of the diagnosis. So I’m sharing Nate’s story, with his blessing, to be one human experience in a sea of data, morbidity statistics, and procedural details. If this touches even one person who gets the same scary diagnosis, then sharing this journey that is so personal to us will be worth it.
Thank you all for taking the time to read and share in this with our family. We’ll never have the words, despite my love for them, to express how overwhelmed with support and love we feel, not just through this hard time, but through all the days of our lives. We love you all!
