I'm exhausted. Physically, mentally, emotionally. My kids sleep through the night, so it's not that. It's just life. It's all of the things I am doing, things I should be doing, and things I wish I could do. It's all piling up. My yoga teacher said someone once told her stress is the difference between how things are and how you want them to be. That pretty much sums it up I'd say.

The reality is there are 24 hours in a day. 8 of those are spent sleeping (or trying to), 9 spent working, so that leaves a measly 7 hours for all the other things in your life. Wait no, not really 7. At least an hour just getting ready, another cooking or some sort of food prep. Most days there's 1/2 to a full hour exercising (even if that's just walking the dog or chasing the kids). An hour of cleanup and playing with the kids. An hour of bedtime routine. What's left, 2? If you're lucky. Half an hour to get ready for bed, and at least some time to spend with your significant other, or even if you're single, some sort of adult conversion outside of work. So maybe you get like 20 minutes a day to yourself? 20 minutes for all the other things I want to do in life.

What else could I want? I like to write. I like to sing and write music with Brian. I like to curl up with a good book or watch a good movie. I like to garden. I like to look up new recipes. I like researching things I'm interested in. I like sorting through all the crap in my house and giving away as much as possible (a never-ending project). I like to do crafts and make things for family and friends. Oh right and some day I want to volunteer and travel and go on more hikes and and and...

And I'm supposed to be a good wife and mother, daughter, sister, friend, niece, cousin, employee, co-worker... I'm supposed to concentrate on my career while being an amazing mother. I'm supposed to make all their food homemade from organic ingredients which requires me to spend a fortune on food and an enormous amount of time baking and cooking. I'm supposed to worry about how my body looks during all of this? Fuck that.

Enough goddammit, enough. I can't do it all. I shouldn't feel like this, like I'm supposed to do it all. Who's making me feel this way? Society? Who is that exactly? The media, friends, family, the government, the mob, who??? Oh right, there isn't one person to blame. I can't control anything except myself. That's taken years of therapy for me to truly believe.

But I really can't. I can't make the world change. I can't even get Sebastian to stop wiping his nose on his shirt. So why do I stress about all these things that I literally can't do, change, or control in any way? Enough, it's time to stop this stress. I don't want to want life to be different than it is. I want to enjoy it for what it is and who I am right now. Not who I'll be after I learn to be an amazing wife, mom, career woman, blah blah blah. I can just be me and enjoy who that is.

I'm actually pretty awesome. And I am enough.

Today is World NF (Neurofibromatosis) Awareness Day. Across the country, bridges and buildings will be lit up blue and green in hopes of spreading more awareness for this disorder which affects over 2 million people worldwide, my son Sebastian included.Here is a short video from CTF (Children's Tumor Foundation, ctf.org) that shows you this is affecting people across the world. 

 Of course after watching this, as YouTube always does, it comes up with suggestions for you to watch. The next video that came up for me was this:

Now that I've composed myself I can attempt to communicate how this has affected my family. Sebastian has so far been very lucky. He has had minor developmental delays, but he has already caught up academically. He seems to have the tendency towards ADD (learning disorders are very common with NF), but as long as someone is there to help keep him focused, he does very well in school. At home, we notice that keeping him active and limiting his screen time, helps enormously with this as well. Physically I'm not too concerned at the moment. He's very good on his bike and is catching up on walking and running. He has some very small bumps on his back that we're watching, and now we're noticing some on his stomach as well. Maybe these are nothing, or maybe they'll be neurofibromas. It's too soon to tell, and even if they are, we won't do anything about them unless they cause a problem. He has had no signs of major tumors or illnesses.

He has not had a rough time with NF so far. The issue is the not knowing. We simply don't know what's going to happen to him. Some people go through life with little to no symptoms. Others are very sick from it. There is nothing we can do about it. There's no treatments. There's no prevention. There's no cure. We can't give him medicine or change his diet or exercise or anything to help or hurt it (although I would bet keeping him healthy won't hurt). It is an incredibly frustrating thing as a parent to know that your child could get very sick at any moment and there is no way to prevent it. Or maybe he'll go through life without a problem. We just don't know.

These statements are all true for anyone really. Life is unpredictable at best. But when you or your child has a diagnosis like NF, it makes these things that much more of a reality for you. Especially since there is very little information about Neurofibromatosis. For a disorder that is more common than cystic fibrosis, muscular dystrophy, and Huntington's Disease combined (http://www.ctf.org/Learn-About-NF/Facts-Statistics.html), you'd think there would be a wealth of information about it. But there are no answers to our most burning questions. More research needs to be done so that people and families affected by this disorder can have the information they need to live as normal a life as possible. Or even better, so that they could someday find a cure.

So please help us spread awareness so that we can all someday #ENDNF. If you're in the Portland area, join our team on July 26th as we walk to raise money and awareness for NF research. If you have time to give and are interested in volunteering, please let me know! If you have money and not time, you can donate on this page as well.

http://ctf.kintera.org/nfwalkportland2015/teamsebastian

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

You read that right, a 15 month old post update, because the 1 year post I planned on writing is just now taking place, so we'll just pretend like I did that on purpose (just to keep you guessing).

Since my last post about Oscar, around his 6 month birthday, he was well on his way to crawling. He started crawling not long after that post, and then soon after pulling himself to standing, and there he stayed for several months. He could walk holding on to things very well at 10-11 months, but he was too cautious to allow himself to let go. He took his first steps on his own at his birthday party, the day before he turned 1. It was the perfect time since some family and close friends were their to see it. We even caught the second walk on video, which was awesome.

In the past 3 months, he has progressed to speed walker/almost running. He loves walking everywhere you'll let him, and especially the places you ask him not to go. He also loves trying to jump, which he already can do on the kid trampoline and the couch. And then there's the dancing.

He's starting to say a few words, "dada" and "mama" being the first. And now most clearly is "hot" which is so funny since that was one of Sebastian's first words too. He is also very close on "duck" and "ball" and has many sounds for things that Brian and I recognize as words, but probably not anyone else yet. One day it sounded like he said "more please" when we were trying to teach him the signs for that, but he sadly hasn't repeated it. He has little interest in learning sign language, but we keep pushing the few signs we found most useful with Sebastian, and he's slowly starting to do them.

His favorite things right now are soft blankets, or softies as we've taken to calling them, and books. He's very interested in flipping through books and loves being read to already which is awesome. His favorite book right now is "Farm Animals- A Book About Animals Sounds". He tries to repeat some of them, and sounds like he's kind of growling in some combination of the "woof, woof" and the "quack, quack".

Sebastian and Oscar have started playing more together, usually games like peek-a-boo or some form of tag which is really just chasing each other around screaming and squealing. They also have made a game of spinning in circles and dancing around the room imitating each other. Sebastian has learned how to share very well with his brother, most of the time. Oscar can't wait to be able to do all the things his brother can do of course.

Oscar is a wonderful and incredibly happy toddler. I can see the crazy, scary toddler part coming right around the corner, but for now I'll just enjoy my happy boy.

Well you wouldn't know it from looking at my lack of posts, but my brain is constantly bursting with things I want to write about. Life is busy and good but I'm struggling to find a time to write. If I was one to make New Years resolutions, writing more would be top of my list. But I'd rather not set myself up for failure.

Since I'm months behind on a Sebastian update, I'll just dive right in. We had him evaluated by the school district and he qualified for free assistance. The plan we agreed on with a whole team of people we met with is to send an occupational therapist to his preschool once a month to see if there's anything they can do to help him with his writing. A physical therapist will also see him occasionally to make sure his gross motor skills aren't too far behind. Both therapists have been to the preschool for a visit or two and left us notes. They both saw the things we were concerned about and are doing what they can, which so far doesn't sound like a lot. But hey, you get what you pay for and it's free so I shouldn't complain. As far as regular physical therapy, we're just going to stick with keeping him active. He's still in gymnastics once a week and he's now riding his bike without training wheels! So while he may not be running well, he's doing amazing on his bike! I was several years older than him before I would even try to ride without training wheels, so I think he's going to be just fine on physical development.

We also had an appointment at Shriners Hospital for Children to see if he needed orthotics. They examined him, watched him run and walk, and did an x-ray of the entire bottom half of his body (awesome machine there got it all in one shot). All good news there, his legs are developing fine. With NF1, deformities of the shin bone, called tibial dysplasia, can happen making it look like this. So we were relieved to see he does NOT have this problem. They said one of his feet is a little flat footed, but orthotics won't help that.

Before the appointment Sebastian asked me why he needed to go to the doctor. I told him they were going to look at his legs and see if he needed something to put in his shoes to make it easier to run. He got all excited about the prospect of the doctors helping him "run super fast!" So he was very disappointed when we left without the magic thing in his shoes. I encouraged him by saying this was a very good thing that he didn't need any help, he'd be able to run super fast on his own if he just kept practicing. Inside I cringed at my own words though. Maybe he'll never be able to run super fast, or maybe he will. I never know what to say but I feel that encouraging him to keep trying is always the right thing. He has to learn to never give up.

Up next for super Sebastian is the long awaited appointment with a pediatric neurologist at the Providence Neurodevelopment Center. We'll see what kind of doctor books out 6+ months in advance. I'm hoping for Hermione Grainger.

Birthdays make most of us reflect on our lives and think about how the time is passing. New Years does the same thing. So when your birthday is on New Years day, I'd say I get a pass on being a sentimental fool for a few days. So in the reflecting I've been doing, I realized a few things. First, 30 sounds so old when you're a kid, seems so far in the future. But it's here so fast and you quickly realize, you have to pay attention, or life is literally going to pass you by. Second, 30 is not old. If you disagree, talk to my 88 year old grandma. And third, I am ridiculously happy with where my life is. Much more happy than I would have ever imagined being. And with a much different life than I imagined for myself. So here are some of those things that make me happy, in no particular order and with as little editing as possible.

1. The happy "good morning, mommy" from Sebastian every day.
2. The giant grin on Oscar's face every day when I say "good morning!"
3. Brian's tossled curls every morning.
4. A promising career and a job I actually enjoy going to.
5. A husband who will throw me a surprise party.
6. Friends who will come to said party, even though they only had a weeks notice. 
7. Friends with kids who are going through the same things as us on this parenting journey.
8. Friends without kids who don't mind spending time with our crazy family.
9. Running.
10. Yoga.
11. Biking to work.
12. Seeing huge trees when I step out my front door.
13. Rain and all the life it brings.
14. Cooking and baking for family and friends.
15. Being able to afford healthy food.
16. Being challenged daily by my children.
17. Living with a houseful of boys.
18. Parents that love being grandparents.
19. In-laws who I love like a second set of parents.
20. A husband who does everything for his kids.
21. Friends that have stayed friends for years and across hundreds of miles.
22. Family and friends that drive hundreds of miles to come visit.
23. Burning Man.
24. Camping.
25. Hiking with Brian.
26. Watching the complete happiness of our greyhound Ginger as she sprints.
27. The Oregon coast.
28. Learning to love who I am.
29. Being with the same amazing man since I was 16.
30. All the amazing sunsets I have seen and have yet to see.

Playa Hermosa, Costa Rica 5/1/2012

Black Rock City, 9/12/2012

Oregon Coast, 9/22/2012

Bald Peak, OR 1/1/2015

UPDATE: I forgot one of the best things ever. Listening to Brian play his music.