Liebster Award

My dear friend and fellow blogger Lisa was kind enough to nominate me for the Liebster Award. She nominated me about 2 months ago, but I haven't had time to write! It's been a crazy and life-changing couple of months. But now is not the time to get into all of it. I have to be honest, I don't really read a lot of blogs regularly, so I hadn't even heard of this award before. But it seems like a great way to help your friends get their blogs read by more people. So here it goes!

My 11 questions from Hip-Baby Mama:

1. Where do you live?- Beaverton, OR

2. What's your favorite movie?- there's too many to choose just 1!

3. How are you feeling today?- meh

4.  What's your favorite part about blogging?- the writing part ;-)

5.  What kind of craft would you recommend for someone who hates crafts?- one of the soap, body wash, or candle making kits. They usually come with everything you need and easy instructions.

6.  What's your favorite snack?- apple slices w/ peanut butter

7.  Tiramisu or Death by Chocolate?- Chocolate baby!

8.  What book can you read over and over again?- Harry Potter

9.  What's your dream job?- writer, singer, or musician

10.  How do you find balance?- Prioritizing and cutting out the things that really aren't important

11.  What about you isn't what it seems?- hmm could be the fact that I look like a hippy but I'm actually a web developer. Or something deeper maybe, but who wants to get into that?

And here's my questions for my nominees:

1. Why do you blog?

2. What is the most recent book that you've read and did you like it?

3. What is your #1 pet peeve?

4. What was the make, model, and color of your first car?

5. If you could have one super power what would it be?

6. Where do you live, and do you like living there?

7. What is your all time favorite song?

8. What are you thinking while you're driving in busy traffic?

9. What's the first thing you think of when you wake up in the morning?

10. What's your dream job?

11. Are you happy?

My Nominees:

1. UnSuperMomma

2. Carved For Joy

3. Mommy, you know what? 

4. Mommy Goes to Work

5. Ambrose Family Adventures

6. Biggest Little Family Blog

7. Hip-Baby Mama (not sure if I'm allowed to tag you bag, but I read your blog more than anyones! ;c))

From Daughter to Mother

Mom's are crazy. There's something that happens to you when you become a mother that just makes you lose your mind a little bit. Before children, women get to do all kinds of things like spend hours getting ready, go out and party, relax, spend money on themselves, etc. without any consequence or guilt. Then we become mothers and we're lucky if we get a moment of complete silence in a day to just sit and close our eyes. But we love our children so much, that we'll trade all those things again, and often times we do by having more than one child! It's total insanity.

But all of these things can't possibly be appreciated fully until you become a parent. Before children, those moments of silence don't mean anything special because we have so many of them. Those nights out on the town aren't rare so there's nothing to savor. You truly do not understand how to cherish time until you watch your tiny infant grow up. And more than anything, you don't appreciate and love your own parents fully until you have children of your own. Then you finally get it. You finally know how much they love you. While you're in the middle of life with your kid, you can't help but stop and go, wow, my parents did all this for me. They love me more than I ever knew.

For moms, we start to appreciate this from the moment we find out we're pregnant. Suddenly we have to worry about everything we put into our body. We have to gain an exorbitant amount of weight in a very short period of time, and then magically lose it in a few weeks. We have to hang over the toilet, puking our guts out or at least thinking we're going to, every day for 3 to 9 months. We have to give birth, whether that entails hours of hard labor, or undergoing major abdominal surgery, either way, it's usually the most painful experience of our lives, as are the next 6 weeks of recovery. But still, we'd trade all these things in a heart beat just for the chance to hold our tiny newborn baby just one more time.

Mothers are truly amazing beings, and you are no exception. From the moment you found out you were pregnant to this very minute, you've loved me with all of your heart. It was obvious in everything you did. Between staying home for 5 years to be an amazing mom and housewife, to working 12 hour night shifts at the hospital for years, you were always working hard for us. You would wake up several hours early before one of these shifts to drive me over an hour away to go to gymnastics classes. And you did this for me for years. You spent an untold number of hours cooking and cleaning, whether you were home full-time or not. You toiled away for months on projects for Megan and me so that we had homemade gifts for birthdays and Christmas. You managed to make every holiday a special occasion, whether it was the tooth fairy coming to visit, the Easter bunny hiding eggs, or Santa Claus bringing gifts, they were all magical and exciting for us.

On top of doing the "traditional" mom jobs, you also managed to teach me how to be a feminist. How to believe in equal rights for women and to never allow a man to treat me poorly. You experienced plenty of sexism in your life and stood up to it and told us the stories, so that we didn't have to go through these things. You taught me how to have a voice and be confident that I was just as smart and valuable as any man out there. You taught me that I was a woman, but I didn't have to be girly if I didn't want to. I could just be me, not society's version of me. I can't tell you enough how grateful I am that I don't feel obligated to spend so much time and money on the superficial things our society tries to demand of women.

You taught me about love and respect for men as well. That I can be in a relationship and be independent too. Your relationship with dad showed me that happy endings aren't just in fairy tales. You guys showed me that you have to communicate about everything, even if you're going to disagree, you still need to tell each other everything if you want to have a lasting relationship. If it wasn't for you and dad, I would have never had the confidence or belief in marriage that I do now.

You spent lots of time teaching me everything I wanted to know, and I wanted to know about everything! You made sure I had lots of opportunities to learn whatever I wanted, which was everything from girl scouts to sports and music. You were always there for me, whether it was help with homework,  or advice about friends or boys. And you're still there for me today. You and dad spent over 20 hours in a car just to see me run my 10k! You were always so proud of me for each of my achievements in life and you made sure I knew that. I've never had to go through life striving to get your approval because I've always had it.

It's hard to list out all the things you did for me because you did everything a mom should do and so much more. But most importantly, you never hesitated to show me all the love you have for me. I am forever grateful for you and your beautiful and kind heart. I hope you know how much I love and appreciate you. Thanks for being you. Happy Birthday!

Optimistically Misunderstood

The geneticist sent a follow-up letter about Sebastian's results with a little more information. I think it was intended to be a review of what we'd discussed in his appointment. But a piece of information jumped out at me and caught me off guard. It said that most people with NF1 develop neurofibromas, or tumors on the nerve sheath. I had been holding onto the statistic that only 15% of patients develop tumors so this didn't sound right. Did I totally misunderstand what they said? Was Sebastian going to get tumors? I called the genetic counselor to ask about it.

The geneticist did say a 15% statistic, but what I misunderstood was what tumors she was talking about. It applies to the optic glioma, or tumors on the optic nerve, which is what the eye exam will be looking for. During this phone call I remembered the discussion in the office, we were discussing brain tumors specifically, and she said these are usually the only kind that arise in NF1 patients and they are rare. So while this is good news still, the bad news is that most people with NF1 do indeed develop the neurofibromas. They usually start developing around puberty and can continue their whole adult life. They can end up with only a couple or they can have a bunch, there's no way to tell and no way to prevent them. They do not cause any pain or issues, they are not cancerous, and they do not usually need to be removed. It's just a cosmetic issue.

We sigh with relief when we hear something like "just a cosmetic issue". But when you think about what that means for your teenage years then there is no sigh of relief but instead a knot forms in your stomach. When my child's a teenager he might end up with tumors all over his body? Ok well maybe we can hide most of them with clothes. What about sports and gym class? Kids (and adults) can be mean, there's no argument there. I cringe to think about what could happen to him. What about when he's an adult? Even as adults, most of us are self conscious over minor things, fat, stretch marks, cellulite, freckles, moles, zits, imagined blemishes of nothing. Imagine having something like tumors to add to that list and it's hard to picture having a healthy adult relationship. Let alone, even if he finds a decent human being, he'll have to worry about the fact that there's a 50% change he'll pass it on to his kids.

How can I possibly raise him to have enough self-confidence to not let any of this bother him? I have no idea, but I'm sure going to try my hardest. Step 1 is to not think of the worst, because we truly do not know if it will be bad or not. Step 2 is for Brian and I to have as much self-confidence as possible so that he has good examples to watch, because let's face it, "do as I say, not as I do" never really works, no matter how much we wish it did. And Step 3 is of course to continue reminding myself that it could be a lot worse.

The letter also reminded us that they do not think Brian or I have this disorder, but there is still a 1% chance we could pass it on to our children. They say a batch of eggs or sperm could have the mutation, so even though we don't have it, we could still have more kids with it. Is 1% enough to even worry about? I think not.

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.

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!

Healthy Desserts

I don't have any updates on Sebastian yet, but while we're waiting, I thought I'd lighten up the subject and write about something completely different, like food.

Now every parent is different when it comes to giving their kids sweets. Sebastian turns into a crazy little brat if he gets a lot of refined sugar, so we try to keep it to a minimum. I have received an amazing amount of criticism for this, with comments like, "your child needs to come to my house so he can have REAL sweets." I am not that mom that is criticizing parents for giving their kids lots of sugar...okay, at least not to their face. If your kid is always running around with a lollipop in their mouth and you're whining to me about the kid being a monster and having cavities, I'm not gonna lie, I'm laughing at you in my head. Still it catches me off guard to get criticism for trying to teach my child healthy habits. But oh well, as we know, parents are just mean to each other. ;-)

So I thought I'd share some of my "fake" sweets that I like to make. I figured if you're going to eat a bunch of sugar, it can at least come with some nutritional value. I just made this one the other night and Sebastian gobbled some up like it was a real brownie. The next night I gave it to him with a scoop of soy ice cream which totally ruined it, he ate all the ice cream and left the brownie. I can't compete with kid crack.

Ohh one more thing, in case you don't know, I had to look it up when I first bought the stuff. There is a difference between cacao powder and cocoa powder. Cacao powder is raw chocolate with nothing added to it, no sugar, no milk, so it's actually quite nutritious for you. You can find it at New Seasons or Whole Foods.

Frosted brownie (from the iPhone app Do Eat Raw)

Ingrediendients:
coconut shredded A handful
dates, pitted 2/3 cup
agave nectar 1 tablespoon
cacao powder 2/3 cup
coconut oil 2 tablespoons
Himalayan salt A pinch
cashews 1 cup

Description :
In a food processor or a blender, process the cashews until finely ground. Add the dates, 1/2 cup of cacao powder, salt and process until the dough starts sticking together. (Mine wasn't very sticky at this point so I added a few more dates and a little bit of coconut oil and processed again.) Press the brownie mixture firmly into a pan and place in the freezer for about an hour. Just before taking it out of the freezer, make the frosting by blending together the coconut oil, the agave and the remaining cacao powder (about 2-3 tbps) until smooth. Release the brownie onto a serving plate and spread on the frosting. Top with coconut flakes and serve. (I keep the leftovers in a covered container in the freezer.)


Another favorite of ours is one we made up. Sebastian named it.

Chocolate Juice

Ingredients:
1 cup unsweetened soy milk
2 tbps cacao powder
1 banana
Handful of frozen blueberries

Blend until smooth and enjoy!

My Tough Little Man

Last week we got word that the insurance company approved the genetic testing for Sebastian. Of course I imagine at least some of it will end up going towards our deductible, so we'll probably have to pay. But at least they approved it which means if he needs further tests done relating to this after we've met the deductible, then they should be covered, so this was good news indeed! The geneticists office called right away and let us know it was approved and that we could bring Sebastian in anytime for the test.

Last time Sebastian got his blood drawn he was about a year old and daddy took him to do it since I was afraid I'd be a nervous wreck. It was for a large blood panel where they were testing him for a variety of things (thyroid, allergies, blood count, etc.) so they needed several vials of blood. Unfortunately it was at a regular LabCorp location where they did not have much experience on babies. It took them a couple of tries and poor Brian had to hold Sebastian down while he screamed and cried. I was very sad for him and thankful I wasn't there since I would not have handled that well.

This time, I offered to go with them but knew I would definitely be a nervous wreck after hearing those stories, and I'd hate for my fears to make Sebastian scared. So nice, calm Brian bravely offered to take him by himself again. But apparently I had nothing to fear. OHSU has phlembotomists with lots of experience with children so they have this down. Granted Sebastian is 2 years older than last time and they were drawing quite a bit less blood, but still it sounds like they knew what they were doing. They did the blood draw super fast, Sebastian flinched but didn't cry, and then they gave him 2 new books to take home. (Distraction is often a magic cure for small children.) Sebastian has talked about the experience several times with Brian and I without any sadness or fear. He says it hurt but referred to it this morning as "the doctor scratched my arm". I asked him if he cried and he says "nooo" with a giggle like that's a funny idea. What a tough little man we have on our hands. I'm so proud of him.

Results can take about a month. So now we wait...