This popped up on my Facebook memories on Dec 17th:

Wow I don't believe it's been over 4 years since we first heard Sebastian might have NF1 (neurofibromatosis type 1). My memory of the day we first heard that word is still very clear. Brian called me at work not long after Sebastian's check-up. I stepped outside to take the call. I answered, expecting to hear all was well. But instead, I heard concern and frustration in Brian's voice as he told me what the doctor said. My heart immediately sank, before I knew anything about it. Not because I was convinced there was anything wrong. But because I had so been hoping for a good check-up for him, finally. But it just wasn't to be.

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."🎶

I have been seriously slacking on blog posts lately, but for a good reason. I've been working on another post for The Mighty about dealing with depression after your child receives a diagnosis, not just for NF, but any medical condition. Parents don't often like to talk about the depression they might experience over their children, but like all mental illness, I think it's important we all start discussing these things. So give it a read and let me know your thoughts!

http://themighty.com/2016/06/experiencing-depression-after-your-childs-diagnosis/

Last day of Kindergarten

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.

Last month we took Sebastian to the Providence Neurodevelopment Center. This is the place that books out over 6 months in advance, so we were quite curious to see what they had to say. I thought the appointment was with a Pediatric Neurologist, but turns out it was a Pediatric Developmental specialist. He did an evaluation of Sebastian, and the results were good. Sebastian now fits into the normal ranges developmentally, on the lower end for gross motor skills, but at least he's in the normal range now. This is great news that he has already caught up to his peers, and means he'll probably do just fine in Kindergarten come this fall.

But... there's always a but. We were disappointed that we waited over 6 months to get in to see this doctor and he did nothing more than the same evaluation that a regular pediatrician does. He was good and nice and all that, but Brian said it was literally the exact same questions and exercises that his pediatrician had done at his last check-up. Why are we told to go see all these specialists when they're not actually doing anything special? It's a giant money-making conspiracy, seriously that's not just hippy talk. It really is. This specialist just kept referring us to more specialists too! He insisted Sebastian needs to be seen by a neurologist annually as well. This is after he just said he's doing fine developmentally. So he needs to go see another specialist for what? The exact same evaluation? I emailed the genetic counselor at OHSU (where he had his DNA test done, so far the only specialist we've seen that was worth the time and money) and asked her opinion. She said for NF1, they don't recommend patients see a neurologist unless they're having specific problems. I was so happy to hear someone agree with us. The only neurologist he's seen so far was not our favorite doctor as she wanted to do an MRI (that required full anesthesia) even though he didn't have anything wrong with him and didn't even have a confirmed diagnosis at the time.

This developmental specialist also recommended Sebastian be re-evaluated by the physical therapist (which was not covered by our insurance last time and cost over $300). Since he's getting the free assistance from the school district, we opted to go that route instead. She said the same things we've noticed, he still is not able to do a true run (where both feet are off the ground for a moment). But he is able to keep up with most of his peers with his fast walk. She didn't have any concerns and neither do we. So for regular physical therapy, we'll continue with gymnastics, bike riding, and walking. I'm also hoping to add more regular yoga at home for him as he really enjoys it (for a few minutes anyway). He's been taking a karate class as well but admitted yesterday that he wants to do something else after this class is over.

I understand that all of these doctors are just covering their ass. I get it, we live in a crazy country where plenty of people are just waiting for their doctor to make a mistake so they can create a stupid lawsuit. I just don't want to put Sebastian through any unnecessary tests or procedures. He may have a lifetime of poking and prodding ahead of him, so I'd rather save it for later when he might actually need it. Especially things like MRIs which at this age are a much bigger deal than when he's a bit older and can sit still for the whole thing without needing sedation. If he shows signs of a tumor we will of course do the MRI, but thankfully he still seems quite healthy.

So next on the list of specialists.... none!

In the doctor's waiting room