Disclaimer: The below post I wrote out of the utter frustration I am currently experiencing with our health care system. I am indeed quite t...
Neurotic Has Neuro In It
There are so many amazing things about being a parent. Doctors are not one of them. When you're pregnant all you wish to hear is that your baby is healthy, and you think once you have a healthy baby, you won't have to worry so much any more. But that's a lie. You will worry forever. Especially if you're like us, and you haven't had a good check-up from your pediatrician since you're kid was 6 months old. First it was he's not growing fast enough. They did every test you could think of, at least that's what I thought at the time. After months of doctors and tests they found nothing and concluded Sebastian was fine, just small for his age. Which is what we told them to begin with, but clearly doctors are the all-knowing gods of the universe and us parents can't possibly know how our own children are doing. After a year and half of staying home with Brian and only going to short preschool classes and no full-time bacteria-infested baby daycares, Sebastian has finally caught back up with the growth chart. So for once, I actually had no fears about his well-check. I even stayed at work and had Brian take him to his 3 year check-up alone. But alas, I was naive.
Instead of hearing the words we all crave to hear, "your child is perfectly healthy", we were confronted with a new vocabulary word. One the pediatrician did not take the time to explain but instead left us with a list of doctors to go see, all of which want referrals and health records, and 2 weeks to 2 months to even return your phone call. No, instead Brian was told "we think Sebastian may have Neurofibromatosis."
Neuro- what did you say? Neurofibromatosis. Google it and you will possibly burst into tears the way I do everytime I think about it too much. Since we were left with no answers, only questions we never thought we'd have, we turned to everyone's favorite research assistant, the Internet. Of course that is not the most accurate and certainly not the most reassuring place to look, but at least we learned what it was and how bad it could be. First on the list of doctors that we could actually get into see was a Neurologist. She confirmed the pediatricians suspicions and said she thinks, according to her check-list that looked like it was printed from the same articles we read online, Sebastian does have neurofibromatosis. The only thing we learned from her was that if he gets a tumor (yep tumor!) then it will be a slow-growing one that won't do much damage for a long time, giving them plenty of time to operate, if necessary. Also that Sebastian is a very intelligent child who is not showing any signs of learning disorders or brain tumors (which are both symptoms). But that she wants to do a brain MRI to make sure. And since a child can't sit still for a 45 minute MRI until he's 9-12 years old, he will have to be under full anesthesia in order to do this.
That was when my world started to really crumble. Everything I thought I understood about what was expected of me as a mother, about how to take care of my child, how to keep my life balanced and happy, all of it has all been ripped out of me and replaced with complete doubt. The kind of doubt you're not sure will ever go away, not with a diagnosis like that. I keep reminding myself that anyone at anytime can grow a tumor for any reason, and there's nothing any of us can do about it, so really, we shouldn't worry at all. And that worrying, of course, does absolutely nothing to help the situation. No matter how much I tell myself those things, it hurts the same amount. If I keep my mind distracted with something else I'm ok. But it's hard not to think about it when I spend a good chunk of time several days a week on the phone with STUPID doctor's office's trying to navigate the maze of complete SHIT that is our health care system. Everything needs a form. No one can do anything without a form, and no one can do anything for 30 fucking days after they get the stupid form. And one place they want us to go is switching to a new electronic system and they are "weeks behind on scheduling" as their message says when you try to call. We called in October and still haven't heard a word. That's a lot of weeks.
Next on the list of doctors we finally navigated successfully into getting an appointment with is a geneticist. There is a $1000 genetic blood test they can do to test for the gene that causes this disorder, and therefore be sure this is what he has. The neurologist made it sound like this isn't really necessary since he meets 2 things on her fancy checklist criteria. His symptoms that meet this by the way, consists of him having more than 6 cafe au lait spots (basically large freckles of which he does have many), and freckles in his groin area (of which he has a couple). The other symptoms on the checklist are things like tumors, freckles in the eyes, lumps on his skin, etc. of which, as far as we know, he has none. The more our good friend Google has told me, the more I feel, despite the outrageous cost (insurance might cover it), that we should do this test to be sure. There are several other things on the list that can cause cafe au lait spots, one of which is "idiopathic" meaning "arising spontaneously or from an obscure or unknown cause", aka there's nothing wrong with him (my favorite option). Maybe I'm being naive again, or just hopelessly optimistic, but I think it would be prudent to make sure he actually has this disorder before we go putting him through a bunch more tests and doctors unnecessarily. I can't help but think the healthcare system is all a giant conspiracy to suck money out of you. Seriously people, this is all over some freckles.
A person with this disorder has a 50% chance of passing it to their kids. 30-50% of people with this disorder develop it spontaneously, and the rest were passed the gene from their parents. Meaning if he has this, there's a good chance that Brian or I have this disorder and are completely unaware of it. In one way I would feel better if one of us had it, because that would mean we've made it this far in life without having any problems, so I would be less concerned about how severe this can be. However, they say the severity can be drastically different from one person to the next, even within a family. And that would also make our decision to keep trying to have another child a difficult one. Do I want to bring another kid into the world that might have health problems his whole life? Do I want to bring, even a healthy child, into our family where we're stressed out and trying to deal with our first child potentially having health problems? It's all a bit overwhelming, so the urge to reproduce has been put on hold until we know more about what's going on with our little man.
Sebastian is still amazingly happy and healthy, despite all this bullshit. Obviously he doesn't quite understand what's going on, and we haven't tried to explain it to him since we don't really know what's going on. But he makes it so much easier to deal with since he continues to be happy no matter what. He can always make me smile through my tears.
This post has sat in a draft state for over 3 months. I wanted to make sure I was really ready before I put this out in the universe. Here i...
The Smiles Make It All Worth It
If you asked Brian and I if we were going to have another kid in the first 18 months of Sebastian's life, you received our resounding "no" or on a good day maybe a "probably not" response. The fact is we spent a majority of that time sick so the thought of another child was not a welcome one. Full-time daycare was definitely not the right move for us. The reality is no amount of breastfeeding will pass your kid good immunities if the mom has a crappy immune system. But we survived it and Sebastian is very healthy these days.
In fact, the last year has been quite amazing. Watching him grow from a baby to a little boy is the best thing I've ever experienced. There were plenty of days of "oh my god, I can't do this. I'm gonna lose it." But there were many more days of "he is the cutest thing on the planet". He has become quite the little social butterfly. Watching him make friends with every person he meets is truly awe inspiring. He revels in being with other people. He says hi to most everyone he passes in the store or on the street, and will try and strike up a conversation with anyone who catches his interest. He loves children and would make an excellent older brother.
But the thought of another child still fills me with fear and doubt in the way only a tiny, helpless being can. I mean come on, it's double everything right? Double the fits, the noise, the toys, clothes, dishes, laundry, food, money, money, money, oh man really it costs HOW much for preschool? Seriously, he's not even 3, I shouldn't have to worry about "tuition" already! It's that much more time I won't have for myself. It's that much more potential sagging skin, stretch marks, and scars on my body. It's that much less sleep.
But the fact is I know it's worth it. It's worth the sleepless nights and endless diapers and vomit and breast pumps and crying, crying, crying, and oh-my-dear-lord-what's-wrong-with-this-kid-what-did-I-do?! panic attacks. It's worth the temper tantrums, potty training, and illnesses. It's worth being pregnant again, which was no easy feat for me. The risk of having another c-section is even worth it, although I will do everything in my power to avoid that horrible mess again. It's worth the stress and disappointment of trying to even get pregnant again.
It's worth all of that. Why? Because being a parent has taught me about love in a way I never would have understood. Because it's hard and I want my life to be full and challenging! Because when I'm 80 years old what am I gonna remember? My family. All the time spent with the people I love. Not all the hours I got to myself because I didn't have another kid. I'm not gonna regret missing out on myself. But I might regret not trying to bring another beautiful and amazing person into this world. And let's face it, the world needs more Sebastians.
Dear Brian, It's crazy how the time has flown. When I think of everything we've experienced in that time, I realize it does feel ...
My Happily Ever After
Dear Brian,
It's crazy how the time has flown. When I think of everything we've experienced in that time, I realize it does feel like 11 years. We've been through so much together, not just as a couple but as individuals. We went from young, slightly co-dependent, but totally in love kids who didn't know as much as we thought we did, to strong, independent individuals who now understand that we don't understand anything! But it's not about understanding who we are, where we're going, or what our point is in life. It's about the ride, the journey, the experience. It's about making life what you want it to be.
You have helped me through some pretty horrific things. Things most friends and boyfriends ran away screaming from. You gave me the reason I needed at the time to love myself and move on. It made me feel like I owed you for all the help you gave me. But over the years I have come to realize the truth. You don't need me to be broken just like I don't need you to fix me. We really don't need each other at all. We just both enjoy the experiences we have together. That's the real reason I'm with you. Not for help, not for happiness, and not to feel worth. I'm here to simply BE with you. And I think you're here for the same reason. I'd have to say that's the best reason I can think of to be in a relationship.
I hope you know how unconditional my feelings are for you. No matter what, I will always care for you. There are always conditions to a relationship, but not to my feelings. That's what I mean when I say I love you. My definition of the love I have for you is a feeling so strong and unconditional that I don't have another word for it. It's that mutually beneficial feeling we have for one another that's helping us both be who we really are. I know that's all you want for me. You don't want me to change for you. You just want me to be the best version of myself. I appreciate that and hope you know I only want the same for you.
The life we've made together is more than I ever envisioned for myself. I never could have imagined even having a friend as good as you, let alone a husband. You rock my universe! Every day you never cease to amaze me on what an incredible human being you are. Not just in the way you treat me and Sebastian, which is amazing in and of itself. But in the way you treat everyone and everything you come in contact with. You don't have a mean or malicious bone in your body. It's so great to be with someone that I can look up to. You inspire me.
I do have one complaint however. You don't play and share your music enough! When I listen to you play I feel like everything good and worthy in this life is in there and I want everyone else to get to hear it too! Don't worry about the words, you don't need them. Your music is amazing all by itself. You don't have to be afraid of failure because as long as you are doing what you love, you will not fail. Just like with Sebastian. That child couldn't be any better because you are doing what you love when you take care of him. I guess that's why our relationship has turned out so wonderful as well.
Thank you for existing. I love you.
-Mel
Summer 2001 |
July 12th, 2003 |
Our trip to Costa Rica was a beautiful one. The country was gorgeous, the people friendly, and I got my fill of sunshine and heat! We practi...
Pura Vida
The first lessons were learned as soon as we arrived. We opted to "save" money and take a cab instead of renting a car. The man who walked us to the cab tells us that the price was 55. I spent the entire 30 min ride staring at the colones we'd exchanged going wtf? The smallest bill was 1000 colones and I assumed no one would take US dollars so I was totally confused. Once we arrived at the hotel I tried out my spanish on the driver and asked how much the price was in colones. He wrote down the number 435.000 (decimal places are the equivalent of commas in spanish) which is almost $1000. Red flags went up that he was trying to rip us off but I still had to pay the guy something. In the end I gave him 45.000 colones, roughly $100, about $40 more than I should've. Several lessons learned from this experience:
1) There are assholes in every country and they will try to take advantage of you.
2) Take the time to learn the foreign currency and exchange rate, and if U.S. dollars are accepted where you're going. Turned out we needed very few colones, mostly everyone accepted U.S. dollars.
3) Rely on your math skills before your language skills.
4) Always rent a car vs taking a taxi.
On to all the good memories! We were fortunate enough to get to use Brian's parents' timeshare, so the resort we stayed at was absolutely stunning, with a view from our room we could've never afforded. We paid for all inclusive for part of our stay, which included two bars, an all you can eat buffet for all our meals, plus snacks and drinks, all of which were delicious and we're pretty sure we each gained 5 pounds. Costa Rican food mostly consists of rice, beans, plantains, vegetables, and tropical fruit, and of course a good amount of American food. All of it was awesome. Best pineapple ever, no joke. Kicked Hawaii's ass. The weight gain was mostly due to the bakers fault, as there was desert at every meal and it was usually too good to pass up.
The beach was lovely and the water was the warmest ocean I've ever felt, probably in the 80s, as were the pools. Snorkeling would've been great the first couple days we were there when the water was calm. Unfortunately the day we tried the surf was very high and the water was filled with microscopic fish that sting you, similar to a jelly fish sting but thankfully not as painful. There were amazing lava rocks to explore along the beach with tons of crabs, snails, and mussels. And of course tons of seashells (I collected a nice box full). And it rained during our last swim, which was awesome.
One day we took a volcano tour to Volcán Arenal. This was an all day tour with lots of driving on winding roads (I took my dramamine which I highly recommend anyone else with motion sickness do the same for a trip like this!), but we got to walk through the rainforest and see the volcano so it was totally worth it. The tour guide was very knowledgeable and taught us a lot about the country, and we got to see the change in the countryside as you go from the dry forests of the coast, inland to the rich volcanic soil and rainforest. The walk through the rainforest was so amazing. Brian and I thought the walk was too easy and short and decided next time we're somewhere with a jungle, we'll sign up for the harder hike! After the rainforest walk, we went to the most beautiful hot springs I'd ever seen. After that we went to dinner at a nice restaurant with an exquisite view of the volcano. The steaming sulfur cloud even cleared enough so we could see the top.
Our last day there we went zip-lining. I expected this to be a little bit scary as I'm not very fond of heights, but it wasn't at all. It was actually a lot of fun. We even got to see monkeys in the wild! And when we were done zip-lining, there was a little mini-zoo with monkeys and snakes. For only $5 you got to go in and hold the monkeys! It was the coolest thing ever. There was a spider monkey, who was in love with Brian, and there were several "white-faced monkeys" as he called them which I think were Capuchins. These guys look cute but they are muy travieso (very mischievous) and are pretty much only interested in searching your pockets for stuff to steal, pulling your hair, and chewing on your jewelry. Whenever you see one sitting calmly on someones shoulder in a movie, you can know that it's incredibly well trained with lots of food, or it's fake.
On March 19th we celebrated our 1 year anniversary of living in Oregon (yes I realize I'm almost a month late on this post, but my life...
10 Reasons Why Oregon Kicks Ass
#7 Farmers Markets. There is a farmers market in every area of the city and most suburbs, some are even year round. There's several that are at least March-November. It makes buying fresh, local, organic produce much easier and affordable. You can even get flowers, starter plants for your garden, and other homemade arts and crafts at most of these. There's usually live music and tons of food to choose from as well. And of course water fountains for kids to run through.
#9 Recycling. Whatever your stand on environmental issues, hopefully we can all agree that we humans, especially Americans, are incredibly wasteful and produce an appalling amount of trash. Recycling may not be the perfect answer, but it's at least an attempt to reuse some resources. There is recycling pick up in every neighborhood and recycling and even compost bins a lot of places you go.
After my last post about Mommyhood , I felt the desire to follow it up with a post about Brian. As most of you know, Brian has been a stay-...
Superdad
The best thing about watching them together is seeing how well they understand each other. I hardly see a parent get down on the same level as the child and really play with them. He can entertain Sebastian for hours playing, not just with toys, but chasing games, hide and seek games, random games that don't even have a name. It's like Brian not only remembers being a kid, he can put himself right back there in that moment and actually be a little boy, all the while being a parent and making sure Sebastian is learning something and not breaking anything (mostly). He let's him have fun and never dampens his excitement, something that I have a hard time doing when the excitement is so great he's screaming with glee at a new record decibel. He has more patience then most people I know combined, and can really let Sebastian do things on his own.
I know there are other stay-at-home dad's out there in the world, but I don't personally know any. That makes Brian quite unique as a man, he's willing to do something most men are not- put himself in a "woman's role" so to speak. Honestly how many guys do you know that are willing to even try that? Of course there are many factors that go into this decision, and this sparks a whole debate that is worthy of another post entirely, so I'll save that for later. ;-)
When I was pregnant, I often had anxiety over the idea of being a mother, because I felt that I wasn't a very "maternal" woman...
Mommyhood
The other thing I still struggle with is how much time to spend with him. Other moms I know seem to always be go, go, go for their kids and never take a moment to do what they want. They sacrifice exercise, diet, friends, marriage/relationships, etc. in order to do everything and spend every moment with their child. I don't know how they do it. If I don't take time for myself I feel my sanity slowly slipping away. There are a few things I've learned over the years that I cannot live without. The biggest ones being exercise and eating healthy. These are both quite time consuming things, but they are not entirely selfish. At a young age, children want to imitate their parents, so I figure the best way to teach Sebastian a healthy lifestyle is to live it. Same goes with my relationship with Brian. A child learns a lot about relationship from witnessing his/her parents. I figure if we want even the slightest chance at not screwing up our kid forever, then staying happily together is probably the best thing we can do for him. That means spending quality time together alone and plenty of money on dates and vacations. But time and money well spent in my opinion.
There are obviously a plethora of things that I wish I could do better or more of, or more and better. Life often leaves us feeling inadequate, and that's multiplied when you're a parent because you have another life depending on you. But if you look at it that way then you will forever be depressed thinking you didn't do enough. I'd rather be happy, so I'll continue to remind myself that I'm doing my best as a mother and someday Sebastian will appreciate all I did for him. And whenever I need a pick-me-up, all I have to do is watch Sebastian walk through a store or restaurant saying hi to everyone and smiling and laughing his goofy laugh, and see how everyone that gets a good look at his face breaks out into a smile of their own. That's proof right there that we're doing a damn good job with this child.
Every time I go through our bookshelf or the nightstand drawer, I usually find about 3 notebooks with the attempt at a journal started. At t...
Filling My Empty Journal
I never really thought to start a blog because I figured I didn't have anything interesting to say to everyone. Then the other day I was at yoga and the teacher was telling the class to remember that you're there for you, not for anyone else. It made me realize how many things we do in life for other people. Not the things we do for our families and friends, but how we do or don't do things depending on how we feel our peers will react. Seeing as this is the silliest reason to not doing something that you like, I decided it was about time I started writing. Other people's opinions should not be holding me back. So here's to self-confidence!
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