Re-reading that post now brings up so many emotions. It's funny to realize how much I just HATED all his doctors, even though they all turned out to be good. Like his pediatrician at the time. I had never even met her at that point but I was pissed she didn't give Brian more information (which I still think she totally should've). In retrospect, I think she just didn't want to scare him if she was wrong. And also general practitioners seem to be well trained, or maybe almost forced, to recommend a specialist for anything that ails us past the basics. I didn't realize at the time how incredibly lucky we were to even have a pediatrician who knew what NF was and recognized the signs. If anything serious had been wrong with Sebastian, catching it early could've made all the difference in helping him.
When reading this, I also feel immense sadness and compassion for the 2012 version of our family, and how perfect our lives had been going until that moment. The year leading up to this news was one of the most stress-free years of my life. We were enjoying living in Oregon and having Sebastian stay home with Brian and being well and healthy more often. I was loving my job and being debt-free after our short-sale had finally went through. I was finally feeling healthy myself, and running, cycling, and doing yoga more than ever before. We had even started trying for baby #2. Life was good.
Obviously the diagnosis changed our lives forever. I used to feel guilty for my depression from this, but as I progressed through my grief, I realized there was nothing for me to be ashamed of. It's hard to go from feeling like life is perfect in one moment to total shit the next. And it's okay to hurt for your child. It's okay to be depressed when you're left helpless. It's okay that I was in denial about it for a long time. It was a rough couple of months after this post as we worked through the process of getting the diagnosis confirmed, seeing all the specialists, doing all the research and educating ourselves as much as possible. But in the end, it all turned out well. We learned this diagnosis was not a death sentence, not even a guaranteed rough life sentence. It's just a label (and we know how I feel about labels). His condition has not worsened. Physical therapy is helping him increase his strength and coordination. He is smarter than ever, reading a full grade ahead and asking me a new math problem daily. He is perfectly healthy, despite the NF1.
I am beyond grateful for how well he is doing. I continue to choose to believe only the best for Sebastian. I'm confident in the knowledge that positive thinking and not worrying every moment is by far the best thing I can do for my kids, no matter what happens in their lives. But a piece of me still wishes I could just go back and hug myself 4 years ago and say the words I needed to hear and believe...
🎶"don't you worry, about a thing, cause every little things gonna be alright."🎶
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