If you are behind on the latest Sebastian news, I'd recommend reading my previous blogs about the subject, otherwise I imagine this will...

The Results

If you are behind on the latest Sebastian news, I'd recommend reading my previous blogs about the subject, otherwise I imagine this will be confusing.
The First One
The Second One
The Third One

In my impatience to get the results, I called the geneticists office on Friday to see if they had them. I know how things pile up on people's desk, so I figured there was a chance they had it and just hadn't called us yet. And I was right. As we suspected, considering they said there was a 90% chance he had it based on his symptoms, his test showed a change in the NF1 gene, meaning he does indeed have neurofibromitosis.

The genetic counselor was who I talked with and she was of course very reassuring that everything was going to be fine. She pointed out that, had the test been negative, there were other, more serious disorders on the list that they would've needed to test for. So in reality this was a good thing. As much as I felt a twinge of anger at her optimism in that moment, I knew she was right. Things could be much, much worse.

So what's next? An eye exam to verify there are no tumors on the optic nerve. Seems like he'd probably have vision problems if this were the case, which he definitely does not, this child sees everything! But it's better to be sure since some people do not have symptoms. We decided to stick with OHSU (where the geneticist is) for the opthomologist since they are all pediatric specialists and even the receptionist knows what NF1 is, so at least we'll have doctors that know what they're looking for and how to look for it on a 3 year old. They said the appointment can take 2-3 hours, because they have to fully dilate his eyes and that can take up to an hour. I can't imagine how to get him to sit still long enough for them to be staring into his eyes for this, but that's why we're sticking with the specialists! But being the better doctors, they were booked until April so his appointment isn't until April 15th. If everything looks good, then we'll be done with doctors and tests for a whole year. Then it'll just be a yearly check-up with the geneticist and the eye exam, to make sure nothing's changed.

I keep reminding myself of the statistics. Only 15% of people with NF1 get tumors, and only a small percentage of them need operations. So there's an 85% chance he'll go through life without any problems from this disorder. It will just be a note in his medical file and the yearly check-ups. It really could be a lot worse.


Happy Birthday Dad! Trying to shop for a father like you is well, close to impossible, since I still haven't gotten rich enough to buy...

To Dad: My Favorite Valentine

Happy Birthday Dad!

Trying to shop for a father like you is well, close to impossible, since I still haven't gotten rich enough to buy you that hot boat and lake to water ski on. ;-) (Maybe someday, we can keep hoping!) I started thinking of something I could do for you that you would really appreciate and enjoy. I realized, hey, I'm a writer, kinda, so why not write you something nice? So here we go.

Every day it becomes increasingly apparent to me that you don't really appreciate your parents until you have a child of your own. When Sebastian's being a little brat, I can't help but think, man I must've been just as irritating when I was a little kid. Which means, my parents must've felt just as frustrated as I do. It makes you realize how much your parents really did for you. You just can't understand that fully until you have to do that much for someone else.

When Sebastian follows us around the house, bugging us to play with him, I think of all the times I would come bug you while you were working or projecting around. I don't once remember you telling me to go away and leave you alone. You were always very good at giving me a job to do if I asked to help. Or stopping what you were doing to teach me something or answer my incessant questioning. I never once thought to thank you for always taking that time with me. You don't realize these things when you're a kid, but not only were you being an amazing father for me, you were also helping me be an excellent parent someday.

And speaking of you working all the time, I cannot thank you enough for that as well. Not only did you always have a steady job and provide financially for our family, but you were, and still are, always working on something. Your inability to sit still and to always be motivated to accomplish something has helped me be a much more productive adult then I would've guessed when I was a lazy teenager sleeping in until noon and you were yelling at me to get out of bed. I see many people in the world, of all ages, that struggle with laziness and motivation. Whenever I see this, I always think of you and am incredibly grateful that I had you to teach me how to stay motivated.

Your motivation isn't just about not being lazy, it's also about finding things you really enjoy doing. Sometimes I think you need to relax and take a break more often (which you totally do!), but then I remind myself how much you enjoy all the things you're always working on. It's not like you're staying at your day job and working all night. You come home every evening and work on the things you actually enjoy doing. There aren't very many people that can honestly say they do what they really enjoy doing every day. Mostly people, myself included sometimes, whine and bitch about our regular day jobs and family taking up all our time, so we never get to do what we enjoy. But you managed your time well enough you always seemed to have time for everything. And you always do something you enjoy every day. That has taught me how important it is to find things that you enjoy doing and actually do them every day. In fact now, I have too many hobbies and not enough time. Which is much better than being bored all the time.

That brings me to the fact that you are pretty much always happy. When I was a depressed teenager, you said something to me that helped me a lot later on. You broke things down to the basics. You'd say, well, do you want to live or do you want to die? You want to live, so, do you want to be happy or do you want to be miserable? You want to be happy. I didn't really get it at the time, but eventually I realized that what you were doing was teaching me that nothing is worth being depressed over. Whatever it is, you gotta get over it so that you can live and be happy. Because after all, that's what we're here to do.

In addition to being happy, you've also taught me other ways to make a difference in the world. You might rant and rave and get a little cynical about politics, but I know that's because you've been around long enough to hear everyone talking about changing things and making them better, but that's all people ever do, is talk about it. Most people don't actually do anything to make the world a better place. But you do, and you taught me plenty of things that make the world better. Things like gardening, conserving water, conserving electricity (shut off the lights when you leave the room!), reusing everything you can, being financially responsible, which translates into buying less material things and therefore wasting less resources, the list goes on. You like to joke that you're trying to make a large carbon footprint, but you know that's not true at all. You're actually one of the most environmentally minded people I know.

Well I could write an entire book about all the things I learned from my parents, and maybe someday I will (and then maybe that book will make me rich and I can buy you that hot boat and lake!). But for now, I will finish with I love you dad. Thank you so much for everything you've done for me. You are the greatest father anyone could ever hope for. Happy Valentine Birthday!