It's been a little over 3 years since we were told Sebastian likely had NF1 . Since hearing this news, I went through all stages of grie...


It's been a little over 3 years since we were told Sebastian likely had NF1. Since hearing this news, I went through all stages of grief. First was definitely denial. Here I stayed for a solid 4 months, from the moment the pediatrician told us her suspicions until we got the results of the DNA test. Then it was anger. Anger that this was my child. Mine. This happens 1 in 3,000 births, why his birth? Then bargaining... what did I do wrong? What could I have done different? What can I do now? Once I did enough research to finally convince myself that there was nothing I could have done, or could even do now to change it, depression set in. For me that depression has not gone away fully. It's a lot better, but if I think too hard on it, I am consumed by too much sadness, too much helplessness.

Since we first received this news, we've taken him to 6 specialists (neurologist, geneticist, opthamologist, physical therapist, orthopedic, and developmental specialist), plus had him evaluated by the school district by another physical therapist and an occupational therapist. The consensus from all of these doctors was that he was doing great for a child with NF. All that was needed was the little bit of help he received from an OT on learning to write. Even that, in retrospect, I think all he really needed was more time to catch up to his peers. After the last doctor, we vowed to take a break from all the specialists, who despite saying he's fine, all want to see him annually. But we decided they can fuck off because that's too many damn doctors appointments for a healthy kid.

However... with a disorder like his, it's hard not to worry about every little thing. Sometimes you want to just ignore it and others you can't help but think, if I ignore this will it turn into something horrible? Something I could've prevented if I'd done something sooner? In the last several months we had become concerned with a few things. Sebastian's been in gymnastics for 2 years and made little progress. He's also been crying whenever we try to get him to run too fast, and consistently complains about pain in his legs. After much discussion we decided we needed to make sure we were truly doing everything we could. I knew that meant it was time for a check-up with a neurologist to see if he really did need an MRI.

We said if we ever needed to take him to a neurologist again we'd find another one. Well the only other place that seemed worth our time was OHSU, who is booked out until the end of the year for new patients! What if there really was something wrong? I just didn't want to wait that long. That's when I really started thinking back to the neurologist he'd seen, and I was remembering that hard denial I had been experiencing during that time. I have written less than nice things about her in more than one post. Now that I'm out of the denial phase, I can honestly say, she didn't do anything wrong, she just did her job. But since I didn't want to hear that there was anything wrong with my little boy, I wrote her off pretty quickly. I realized it wouldn't have mattered what any doctor had said or done at that point, if it wasn't good news I didn't want to hear it. With this realization, we decided to give her another shot.

We saw her this morning. She asked us lots of questions about the leg pain, and all the specialists we'd seen since our last visit with her. She did her evaluation of him again and her results this time were very good. She says he's actually doing really great, and she sees no need for the MRI. Her tune seemed to have changed a bit as she didn't seem to recall being that concerned about him needing the MRI last time. Maybe it was just how I was feeling then, or maybe she has changed her mind about when an MRI is needed, who knows. But there was nothing wrong with her abilities as a doctor this time, I think it was all about perspective.

Amazing how often in life your perspective can change so drastically, and how different everything is when it does change. I have been flooded with a huge wave of relief since hearing that he doesn't need an MRI. Maybe that's not such a big deal for some people, but for me, where I was at with my concern for him, it was the exact thing I needed to finally help me into the acceptance phase of this grief. Obviously this day could've gone very differently, and there's no guarantee something won't change for him in the future. But for now, I'll take this moment and enjoy the hell out of it because my baby is ok.