Halloweenie type-blog

Okay, so the four of you who actually read and follow this blog may have noticed that I have a fancy-pants new Halloween banner, designed by none other than the fabulous Mrs. April McDonald, fabulous friend and owner of SHEflops (http://www.sheflops.blogspot.com)! So I wrote this heavy blog the other day, and when I went back to edit, I looked at the cute little witch and thought she should have something light and Halloweenie underneath her, so here it is, a light, meaningless, Halloweenie-type blog...

So, today is October 1, and my mother has already started decorating the inside of the house, as much as she can around the papier mache mess that is our dining room table at the moment. Our dining room table is a papier mache mess because Mike needs papier mache skeleton heads and pumpkins to concoct his fabulous front-yard masterpiece for this year. For those of you who don't know, we live in a corner house. This means that not only is our house a prime spot for trick-or-treaters, but our house is highly visible from the street, and Mike loves to get his Rick Baker on, so every year, he builds this amazing front yard display that draws people for miles. Every year, he outdoes himself...this year is sure to be no exception, but such an alluring display takes time and effort, so we got an early start this year...I will post pics as they are available...but in the meantime, here was last year's display...

This was a wizard that my talented hubby made "animatronic" using the guts from an old fan and various pieces from old Halloween costumes and decorations from previous years...yes, seriously...

This was the rest of the yard, in front of the house, which he tries to make "kid-friendly" for the smaller kids so they don't get scared to come up to the front of the house...

So, that was last year...this year, in addition to making sticky papier mache heads and pumpkins with the kids for the display, I have also been busy crocheting, because Sarah decided that this year she wants to be a clown fish. Why, I have no idea...She loves Nemo as much as she loves all of her Disney movies, but I don't know that I would call it her favorite. So, I got right to work designing and crocheting a clown fish hat, because all of my costume designs for the crazy costumes this child comes up with that, of course, can not be found in any store or online, are based on one thing: WARMTH...we live in Southern California, which means that Autumn is a relative term denoting the general time of year and not necessarily the temperament of the weather. It was 86 degrees today. I am running the air conditioner right now praying that this child goes to sleep sometime soon. But come October 31, it's gonna get COLD...and I don't just mean cold, I mean ridiculously, "now, where did I leave that parka?" cold...and every year, I take the kids out in this cold in the spirit of not being the crazy mom who denies her children one of the pleasures of childhood because I'm too overprotective, and every year, either they end up sick, or I do and THEN they do...not fun...so instead of being the crazy mom who bans Halloween because it's too damn cold outside, I am the crazy mom who makes the kids wear sweaters, under or over their costumes, it's up to them. If it's one of those jumpsuit type costumes, then I layer them up with thermals and undershirts, a la Christmas Story ("I can't put my arms down!") So designing Sarah's costume the last two years has actually been good for me because I could give my little girl exactly what she wanted while still getting what I wanted.

Last year, she decided around this time that she wanted to be Coraline. Of course, I have yet to see a Coraline costume on or off line, so I set about to make one. Easy enough: Raincoat, sweater, jeans, rain boots, and a blue wig...only she wouldn't keep the wig on because it was "itchy". So I set about designing a sort of hat/wig combo, (which took hours) and it actually came out pretty cool, and she loved it...for about 30 seconds...she marched about the room, went to Ama's room to look at herself in the mirror, preened for a bit, and then threw the hat on the floor and declared that she didn't want to be Coraline anymore, she wanted to be Olivia. Sigh. I kept asking her again over the next couple of days, whether or not she would reconsider, but that would have been too easy. Nope. She absolutely refused to wear the Coraline costume. And since it was her first real time trick or treating (the year before her counts were low so we were forced to stay indoors), I begrudgingly obliged. I went to the fabric store, bought some red felt, and sewed a simple red jumper; painted red stripes on one of her turtlenecks with a fabric marker; made her a headband with pointy, Olivia-esque ears, which I inserted into a pink beanie; sewed a pair of too-large red and white striped tights to fit her, and finished it off with pink ballet slippers and a child's procedure mask with a snout drawn on it in crayon...she looked adorable, although most people thought she was a bunny, which seemed to upset her just a little...but she got a ton of candy, and she got to go around the block, plus she was super warm in her turtleneck, tights and several undershirts I layered underneath the turtleneck! Here is a picture...

 

and another...

and one more with Daddy...

So this year, I told Miss Bossy Boots that she needed to pick a costume and stick to it. She is adamant (so far) that she wants to be a clown fish, so I spent an entire day making this:

And she loves it! Wore it all day! Yay! Now to figure out the rest...so yesterday, Mike and I went running around with Sarah and Azrael after we picked Azrael up from school, and we picked up a pair of white sweats, because Mike said it would be much cooler if we tie-dyed them orange so they would have the subtle striping instead of just buying plain old orange sweats...so we went to the store to buy the sweats, and my daughter, who takes after me in almost NO way whatsoever, spends the entire time doing this:

She walked around the entire store so enraptured in her book that she was running into the racks! Then we ran the rest of our errands, and I spent my Friday night doing this:

You would think that after a few HOURS, her sweats would now be a vibrant, clown-fishy orange, right? Nope...her sweats are a sickly peachish color...so tomorrow, Daddy and I are going to look for orange paint for the air brush, or orange sweats as a backup...and if none of that works, we are going to break down and just buy this:

In case you can't tell, this is a PREMADE clownfish costume that according to my research did not exist two weeks ago...$20 at Big Lots...but then what do we do with the fabulous clownfish hat Momma made? Oh, well...

I for one am looking forward to this holiday season...already I have started making my daughter's halloween costume, eaten WAY too much Halloween candy, watched the Great Pumpkin about 14 million times, and am greatly looking forward to toasting pumpkin seeds with the kids as I do every year....the air is getting cooler (somewhat) and the time is drawing nigh for everyone to draw closer together...as this year draws slowly to a close, I realize that we have much to be thankful for, and I for one am looking forward to celebrating this upcoming holiday season as always...surrounded by those I love most.

How to Survive Being a Cancer Mom...

Okay, so I  know it's been forever, but there has been some crazy stuff going on over here...there was the Disneyland trip, which, as you know if you have been following my facebook page and the zillions of pictures and videos I posted while we were there, was AMAZING!!! Then there was the few days we spent at my sister's in Lancaster while they re-piped our house...then there was the four extra days in the back while they finished re-piping the house, then more impromptu Disneyland trips to finish off the summer (Annual Passes are awesome! :) If you can, you should totally get one!) and Sarah's counts dropped, so now we are stuck indoors, but to say the least, this little monkey has made it interesting!

While I was at said sister's house crashing her little love nest and waiting for the ancient pipes to be replaced, my ancient phone (it had already been OVER two years!) decided that it also needed to be replaced, and I had a little extra cash left over from the money we had saved for Disneyland, so with my husband's permission, of course, I bought myself a brand new, top of the line and much deserved new toy: The LG Revolution 4G, which promptly spurred jealousy in my husband so that he had to run out and buy the Samsung Galaxy Tab so as  not to be outdone...boys...

So, anyway, I am loving my new toy...I can manage my entire schedule, calendar, reminders, internet, email, facebook, apps, I even have virtual post-its that hang out on my home screen, right underneath my Robert Pattinson wallpaper...(Immature, I know, but sue me, he's hot!) One of these post-its has been hanging out there since the day after I got the phone, about a month ago...it says "Write blog"...I'm kind of sick of looking at it, so I figured that I'd better do what it says so that it will go away and leave me alone, so here it is...

The blog that I wanted to write, the blog that has been haunting me with its non-existence for well nigh a month now, was a list of what I have learned from this whole experience of being a "cancer mom" thus far. Obviously there is much to learn, much that I continue to learn every day, but I kind of just wanted to document a few things that I have learned thus far through this whole ordeal, for other moms going through this in the early stages that may benefit from what I have already been through, and for moms who thankfully will never have to endure this, and for everyone else so that they might get a taste of what this has been like thus far. Everyone always says to me, "I don't know how you do it. I don't know how you are strong enough to survive this." So here are some answers to those questions, at least the ones that I have been able to put my finger on:

1. Journaling
I started a journal when Sarah was born, because I wanted to preserve her exactly as she was, I wanted to immortalize at least a part of her, I wanted to record my thoughts and my feelings at these exact moments as she was growing up, so that she would have a record of it, of just how much I adore her, in my own words. It was a verbose baby book of sorts, it has some random pictures stuck in, some doodles that Sarah did herself, a list of her first words, and her little one-liners, a record of her growing up. Once she got sick, I debated whether or not I should continue. Up until she had been diagnosed at 20 months, the journal was such a happy, joyful place for my thoughts and feelings. There was no sadness, only my complete elation and thankfulness for the gift of being her mother. Then her diagnosis came, and I decided to continue, because the medicines and the IV drips, the hospital stays and the steroid fits, they had all become just as much a part of her, a part of me, a part of her history as her first word and her first step. It was all just as important, and just as beautiful. It is all a testament to her courage and her strength. So I write it all down, as much as I can, as much as I have time for. It is a great comfort and relief to me when I feel alone or do not wish to burden my loved ones with my histrionics, and it may serve as an inspiration to her later on when she feels defeated and downtrodden. At the very least, it may be fuel for some damn good guilt trips! lol "The hell you're not going to college, young lady, do you have any idea what I've been through with you???"

2. Be prepared

In the beginning, no one told me what to expect. I mean, they did, but it's kind of like being new to anything: the only way you truly learn is through experience, trial and error...In the early days, I was not used to Sarah's labs being anything but normal, and I also was not used to her doctors being so far away from our house, so the first time I took her in for labs, I got dressed in some jeans, and my favorite Tori Amos t-shirt, I brought one change of clothes in the small diaper bag, I had a small snack in the diaper bag, like two diapers, and only a small supply of baby wipes. I was, after all, only taking Sarah in for a lab appointment, which takes 20 minutes to an hour depending on how busy the clinic is and whether or not they are running behind and/or short-staffed...so I took her in, got the labs done, and was happily on my way home when I get a phone call 20 minutes into my 40 minute car ride home that Sarah needs blood, and that I am to take her back in two hours to the OPI for a transfusion. So I turn around, head back toward the hospital, and figure, okay, it's only two hours that we have to kill, no biggie...but I was unused to having a baby with cancer out and about....what was I supposed to do with her for two hours without exposing her to other people and their germs? So I took her through the drive through, got us some lunch, and sat in the backseat next to her car seat so we could eat lunch together and watch a movie on the dvd player. It took about two seconds before I spilled ranch sauce all over my favorite t-shirt and my jeans, then the baby spilled water on her outfit, so I changed her, then she wet her back up outfit, so I have no diapers, no clothes, no food, and I still have to sit through a four hour infusion with dirty clothes on...NEVER AGAIN!!! Now, I pack for a trip to OPI like I'm never coming home! Extra everything, snacks, water, food for me (they only feed her), entertainment for me, dvds, books, toys, pillows, blankets, I am almost positive we look homeless! But we are comfortable, and I have never again had to sit through another uncomfortable infusion like that first one.

3. Lean on other moms

I know sometimes, especially when a mom is going through such a horrific ordeal, it becomes tempting to become something of a martyr, to adopt an "I can do it myself" attitude, but the truth is, the support of other moms, especially other cancer moms, will prove INVALUABLE in getting a cancer mom through this difficult time. A cancer mom is put in a very unique and difficult position when it comes to her child. You never quite know what is normal, what is the drugs talking, and what is just idiosyncratic to your kid. It helps to get input from other moms, especially moms in the same position, because it makes you feel like you're not alone. Being a cancer mom can be very lonely at times. Everyone else has their lives to lead, and the band marches on. It's not that they don't care, or that they don't get it, but when you break down, the people you expected be there aren't always dependable. It pays to make new friends, and to lean on each other when you need comforting. An ordeal like this shows you who your friends truly are, and as trite as that sounds, it's true. I have two very good friends who were there from beginning to end, and some wonderful new friends who have been there from the minute they first entered my life up until now, and then there were friends and even some family members that not only were not supportive, but went out of their way to make my life hell. If it wasn't for my very dear loved ones, I could not have made it through this far...

4. Take in the positive, flush out the negative...

I know it sounds very "zen" to see everything as a learning experience, and to try to see the silver lining in everything, and to be perfectly honest, there are days going through this with Sarah that even I think that is complete bullshit, but I try to live my life by this mantra as best as I can. I have to...no one has time for me to break down, least of all Sarah...but even in this, there is something here, a lesson that must be learned, and if you are going to proceed through this with your sanity intact, you have to learn to cull what is good, and throw out the rest. This is especially true of "words of wisdom". Since Sarah was diagnosed, people offer me platitudes and adages. I think they don't know what else to say, and that's fine. They're doing the best they can, they are trying to offer support, and I appreciate that for what it is. Then there are the people who I honestly believe are physically unable to hear the horrific shit that spews forth from their lips. My personal favorite came from one of my own: my stepmother. She says (behind my back, of course...I don't even want to think about what I would do or how "zen" I would be if she ever said this to my face) that Sarah's cancer is my fault, my punishment from God for not getting married "the right way" (i.e. in a church, by a priest or reverend or other such holy person)and for marrying someone who is not "from the church"...apparently, this is also why I lost the three babies that preceeded Sarah, according to her. Even as I write this, the blood is rising in my veins and I am ready to do her some physical injury. Of course, I have not and I will not. I have not even confronted her about the fact that I know she said these horrific things about my precious baby, about me. The way i see it, her ignorance is her problem. We all have to meet our maker someday, and the stupid shit she lets come out of her mouth is up to her to explain to God, not me. I have never seen Sarah as anything but a blessing, and I still don't. She is beautiful, she is smart, she is hilarious. Everything I ever wanted in a little girl, I got in spades, and so much more. I thank God for her every day. She is my gift, she is my hero, my reward for my faith...a punishment? NEVER...How could I possibly suffer with so beautiful a punishment? I take it for what it is: the ignorance of a cantankerous and overzealous woman who is so miserable she has to make everyone else miserable, too. NOT MY PROBLEM. I have my own. Do I have negative thoughts sometimes? Of course! I am just coming off a week-long funk where I let my thoughts get the better of me, but I am only human. I talked to some trusted friends, I moved on as best as I could.

5. Do not judge the cancer mom

Having a kid with cancer is a little different than raising a healthy child. Like I said before, it's hard to gauge what is normal for their developmental stage, what is the chemo talking, and what is just your kid. That being said, there are things that us cancer moms do that may look crazy to the rest of the world. DO NOT JUDGE THE CANCER MOM! At the beginning, there was this mom in the clinic who was allowing her daughter to eat chips for breakfast. And yes, I will shamefully admit, I judged her. I looked at her like she had completely given up control to her kid. Fast Forward two years later, to where my steroid-ridden daughter is eating tuna and fritos for breakfast, and only because I refused to give her fritos without something healthy to go along with it. I have given up the concept of "breakfast food". As long as it's food and it's not going to give her a stomach ache, she can have it. So yes, my daughter eats rice for breakfast, and eggs for dinner...today, coming down from the steroids, she ate 6, yes I said SIX hard boiled eggs! I half expected to see her doing bench presses in the corner! But hey, it's not fritos! Do NOT judge the cancer mom! :)

6. Be willing to let go...

This is the hardest one, one that I am still struggling with...Lord knows, I am NO ONE'S idea of a Type A personality, but in this world I've been thrust into where I control almost nothing, I have become obsessed with controlling the things I can. I want to do everything, I do not want to delegate, and it leaves me frazzled and tired and half-crazed. Learn to delegate. Learn to let go...I believe that the reason, the main reason for the funk I've been in is because I have had to face some very hard truths and let go of some very heartfelt dreams. This was NO ONE'S vision of what my life, what Sarah's life was supposed to be like. At nearly four, she was supposed to be in preschool. I was supposed to be at work, getting phone calls from her teacher saying she said something hilarious yet inappropriate because Daddy sometimes forgets that she's only three and has not yet learned to IGNORE HIM and not repeat the wonderful jewels that spill from his lips sometimes...She was supposed to have long curly hair spilling down her back...a lot of things were supposed to happen, but they won't. This is the hand that we got dealt, and it's time to let the old dream go, find a new dream. The dream now is to see Sarah not only survive, but prosper. To see her at 10, at 16, at 20. To watch her get married and build a life for herself. It remains to be seen if children will be a possibility for her, and that thought makes me sad because I know all too well what that pain is like. But she will be here to endure it. Things will be as they should be. I cannot control everything, so I need to learn to accept things as they happen, and enjoy every moment for what it is, because every moment that I get to spend with her, every breath that she takes is a precious gift, not to be taken for granted.

Thank you all for taking the time to read all of my ramblings and nonsense...it ran longer than I thought it would, but it felt good to write, so that's something...I can check number 1 off the list now! :)

The hardest days...

These past few days have been craziness, in a very positive way. I discussed with my husband the possibility of hosting an online sale, since there was a tumbleweed running through my fanpage and we wanted to take as much spending money as possible to Disneyland in less than two weeks. For those of you not in the know (although I think all four of you who actually read this are IN the know), Sarah is getting her wish granted through the Make A Wish Foundation in 10 days! Her wish was to go to Disneyland. She went once before, on my 30th birthday (HA! I "accidentally" typed "20th"...Freudian slip much? lol), just two months before she was diagnosed with ALL. I look back at the pictures of her then, cute little pigtails, chubby little baby face streaked with cotton candy and whatever else my mom said she could have despite my protests, and I think I should have known. While we were waiting in line for the Haunted Mansion (yes, OUR baby rode the Haunted Mansion at 18 months and didn't even blink, she is THAT fearless!), I noticed a gray hair while she rode on her father's shoulders. When I mentioned it to Dr. Asshole Rockstar, he of course told me it was nothing. It happens. But I should have known then. Anyway, it is what it is, but for the following two years, sick or not, Miss Bossy Boots has been begging us to take her back to the Happiest Place on Earth, and it broke our hearts to have to explain to her why we couldn't take her. So we planned a trip. Two years from now, my mom was going to trade in her time share, and we were going to save, save, save for the "Fake-cation" of a lifetime in sunny Aneheim, CA. By then, I imagined that she would at least have a cute little Snow White-esque bob, and she would dress like a different princess every day. Then the social worker at the hospital asked if Sarah had been granted a wish, and long story short, we got our "Fake-cation" a lot sooner, and totally paid for. So, I knew then her hair wouldn't be as long when we got to go, but still I envisioned this, and I kept this vision in my head during the hardest of days...during the hospital stays, during the blood transfusions and the countless hours in the ER, and especially the LP's that KILL me every single time she has to endure them.

Sarah just had an LP today, so allow me to digress a bit, dear reader, to impart to you the images that are still fresh in my mind. LP's are Lumbar Punctures, better known to the layperson as a "spinal tap". Basically, they inject chemo drugs into her spinal column to prevent the cancer from spreading to her nervous system, including her brain. She has them every few months or so, and she has had at least 20 during the course of her treatment over the past two years. So you would think that these LP's would become as routine as everything else us "cancer moms" have to go through, right? I mean, after all, I can speak "cancer-ese" with the best of them. Over the past two years, I have learned an entirely new vocabulary set. LP, PT, 6MP (aka Mercaptopurine), Methotrexate, Dexamethasone, flush the line, port access, lymphoblasts.I can tell at a touch whether or not Sarah is spiking a fever. I routinely pack a lunch for OPI (another vocab term), because they only feed her, and her little body loves to surprise us with the necessity for transfusions that take four hours or more. I am used to all of this. I no longer have to ask doctors to explain when they speak "cancer-ese" to each other, and they no longer bother to dummy it down for me. I am, after two years, an old hand at this. I follow every instruction to the letter, I never miss appointments, I am never late without a damn good reason. I call ahead. You would think the LP's would be just as routine, that we would be just as used to it as all the rest.

I'm not even sure what it is. Because all the rest of it is routine. I don't stop to think about the gravity of it all, I just do what needs to be done. Blood? Sure. Platelets, fill 'er up. Hospital stay? Not ideal, but whatever. But the very mention of an upcoming LP will begin to twist my stomach into knots. I'm not sure what it is. Routinely, an LP goes like this: The child is sedated with two drugs, versed and ketamine. This puts the child into a "twilight" sleep, which means they're not totally under, but they are sedated enough to where they won't fight, and one of the drugs helps to block their memory so that they won't really remember the procedure. As soon as the child goes under, the parent leaves the room. A few minutes later, the parent is retrieved, and the child is monitored with those science fiction-y electrodes. Her finger or toe is hooked up to a Pulse-aux machine, which measures her heart rate (the little sticker that goes on her finger or toe has a red light on it, so we call this "ET toes", because they usually put it on her toe to keep her from taking it off). The child is monitored until they are showing signs of being back to normal, and then they are released. Not too bad right?

UH-UH....Excruciatingly HORRIBLE to endure as a parent. See, the scenario I just described is if the child COOPERATES, which my child, of course, does not. Sarah is smart. Sarah is a watcher. She likes to see what's going on. She likes to be in the middle of everything. She does not like to lack focus or control. So for her, being sedated is a form of torture, because these drugs affect her as if she were very, very drunk. Slurred speech, double vision, etc. So she fights. They push the drugs through her line, and as soon as she realizes she's going under, she freaks. It's like watching your child being pulled out of your arms, screaming and yelling for you, and there is nothing you can do. Then, the drugs start to take effect, and that sparkle, that light that I so love about Sarah's eyes, goes out, and there is nothing. A dead stare. Cold, gone. Nothing. And I hold her, and I look, and I force a smile because it's what she needs from me, reassurance that everything is okay, because behind those dead eyes is my baby, frightened and fighting to push through the drugs back to consciousness. So I smile. And I look my baby in those dead, cold eyes, and I coo to her that everything is going to be okay, because somewhere within me I know that when this is all over in just a matter a minutes, it will be. Then comes the really hard part, as if this wasn't bad enough. First, Sarah is now old enough and smart enough to know what the "little white room" is for, so even sedated, trying to get her in there is like trying to bathe a cat. She screams and clings to me, climbing up  my body as though something were chasing her. Not only do I have to take her in this room that frightens her so anyway, I have to turn around and LEAVE HER THERE. In good hands, of course, but I have to fight every motherly instinct that I have in order to do it. But I do, then I get to go sit in the waiting room, and fight the urge to cry for the longest five minutes of my life. Believe it or not, this is really the only time that I feel the need to break down, these LP days, and I CAN'T.

So now that I've terrified and made the reading of this sufficiently awkward, I think you can understand now if you didn't before just how special this trip is to us. For five whole days, our family will be together, all of us. For five days, all we will have to worry about is being overly gluttonous. My little princess is going to Disneyland bald-headed, but I have a bow and a headband for every single outfit. Daddy can play and doesn't have to look at the clock. Mommy can let the kids be kids and eat junk three meals a day. Mommy doesn't have to be the heavy and say no for FIVE WHOLE DAYS. Ama can buy Sarah whatever she wants, and Mommy won't say a word.When Sarah sees the castle at the beginning of any Disney movie, she screams as loud as she can, "DISNEYLAND!!!!"  In just 10 days, she will be there for real.

I had no idea when I posted the sale that so many people would participate, much less leave such generous donations. I feel so loved, and so blessed, both for myself and for our family, especially Sarah. I am so, so blessed to have such kind hearted, generous people in my life, whether I have formally made their acquaintance or not, and it is people like these and their encouragement and emotional support that get me through these difficult days.

Randomness...

It is 1:29 AM, and I cannot sleep, so I shall subject you all to my wanton randomness...Sure, there are countless other things I could be/should be doing right now,  but who folds laundry at 1:30 in the morning? I could be studying for that notary public thing (see? Randomness...), but I just plain don't wanna....I have run out of things to read, my book is at a standstill (although if this doesn't make me feel sufficiently accomplished and sleepy, I may just dust it off and write some shitty paragraphs, anyway, just to say I did), and there is nothing, I mean NOTHING on cable, because everyone else has a life and is either still out or passed out by now. That never fails to trip me out, cable. two thousand channels, and nothing on that is worth watching, but cancel it, and you may as well be living in a cave. My husband is working (yes, on a Saturday...poor guy) and the baby is FINALLY asleep, in her bed, and has stayed that way for the past three hours! So what to do with myself and my randomly set internal clock that is still used to being smothered and elbowed by my adorable insomniac toddler right about now? Regale you all with my randomness, and put my lack of sleep to good use, that's what. But see, here's the thing about randomness...it's random. There is no point to any of this, and by the time I'm done, you will all feel cheated and demand the last five minutes of your life back. The point is, there is no point. I'm bored. I'm tired, but not sleepy. Apparently, the only people awake at this hour are either not home or really, really like soft core porn, because that's all that's on. And I need to feel like I did something, so here it is. Randomness, for your reading pleasure.

FACEBOOK IS NOT YOUR DIARY!!!

Okay, so I will probably get in trouble for this, but it's late and I haven't slept in a week because the Roid Rage Monster is visiting our house again, so I soooo don't care right now because this is something I've been wanting to get off my chest for awhile. I have noticed some "trends" on facebook that I find offensive/off-putting/slightly annoying, and I've been wanting to comment on it for awhile, but I didn't want to offend anyone else. That being said, I'm a writer. They say "write what you know", and if I don't, then I guess I am doing myself and my craft an injustice of some sort...orrrr, it was bugging me enough that I just had to say something, so here goes...

FACEBOOK IS NOT YOUR DIARY!

1. I don't care who you're sleeping with, when, where or how. Especially how. You're having sex, good for you. You are obviously proud of your "accomplishment" or you wouldn't be shouting it from the virtual rooftops, but seriously, don't care...

2. Don't bash your boyfriend/girlfriend/husband/wife/kids/boss/best friend, only to tell me two posts later how wonderful they are. It makes one look bipolar when he/she posts "I'M SO GOING TO DIVORCE HIS ASS!" and then you post a cute picture of the two of you...I understand all couples have their ups and downs, I understand that it can be validating to get support when you are frustrated, I just think that saying things you don't mean should be a habit to get out of, both on and off facebook...

3. Posting on someone's wall is NOT the same thing as sending them a message! There are some things that should remain "just between friends"...like a picture of the two of you wasted at last night's party...where she's holding your hair back...

4. Ladies, I love you, and I embrace your feminine power, but I do not need to see your boobs, self-shot or otherwise...cover 'em up girls, less is more! 

I'm sure there are more, if I really sat and thought about it, but these are the ones that bug me the most, so they were the ones that came to mind first. Don't get me wrong. I love facebook! I am on facebook all the time, and I think it is a very useful and valuable tool for many things, especially keeping in touch with old friends. But in real life and on the web there is such a thing as too much information, call me old fashioned! I guess I'll sign off now, so I don't have to watch my number of friends decrease, but take this with a grain of salt. This is my opinion. They are just general observations and I am posting them here, mainly because I am sure you have seen the same things that I have, and I thought the two of you who actually read my blog would get a kick out of it and be proud that I actually wrote something for once. My intention was not to offend anyone, nor am I referring to anyone in particular. Take it with the humor in which it was intended, and if you cannot, then maybe you should rethink that next post...just sayin'...

The little things...

Okay, so lately I have been having these crazy days, the kind of days that pass in a dream-like state, the kind of days that seem like they didn't even happen. Be it exhaustion or cabin fever, or just plain good ol' fashioned ennui, I have not exactly been present lately. I go through the motions, do what I have to do, I feign smiles for my daughters' sake, but I haven't really been here, and I'm not exactly sure why, but there it is. My astonishing admission that I do not live to clean the poop off the potty seat or pick up Daddy's socks (again). Then today, I get an e-mail from a fellow cancer mom who has it so much worse than me. Way worse. And I get to thinking, about how lucky I am, despite it all, how I need to practice what I preach, follow my own advice, believe in my own bullshit.

"What can I say?" is what everyone says when they are at a loss for words because they never thought they would have to be in the position they are in, but I know better than most what to tell her to bring her some modicum of comfort, because I have been there. Maybe not quite where she is, but close. I tell her, as cliched as it may sound, to take comfort and reward in the little things. As cancer moms, we can't parade around the mall with our babies, secretly having a baby beauty contest in our heads (don't scoff, you KNOW you do it, too). We can't go to the park, or to play group. My daughter will never bring home her first art project from preschool, because she will never go to preschool.

And that sucks. Hard. But it is what is. We do not have the trophies that should be every mother's right to bear, we have crosses instead. But what we are left with is a strength that these mothers don't have, and God willing, will never have to have. We are left with children that are resilient and strong as well. We are left with the little victories that most mothers take for granted, even find annoying at times.

Take grass stains, for example. The other day, Mike gave me a break (in which I should have been writing, but instead I decided to tackle Mount Laundry, what the hell is wrong with me?) and had Sarah outside all day, and I do mean ALL DAY, sunup to sundown. Now, he's a dad, which by definition means he pays for the expensive Gymboree clothes but is not careful about staining the expensive Gymboree clothes, and it does not even phase him that she probably shouldn't be playing in the expensive Gymboree clothes if she expects to get more than one use out of them, because I hate taking my daughter out in dirty clothes. So there I am a few days later, trying to pre-treat grass stains that have been sitting for a few days, because Mike also gave her a bath that day, which means that I didn't see the grass stains when I could have possibly salvaged the expensive Gymboree clothes. And I am smiling. An outfit ruined by grass stains, every mother's nightmare, right? Not me. I am scrubbing the grass stains out of the knees, and I am smiling. I'm not even pissed that this expensive outfit is now forever banished to the play clothes drawer after she has worn it once.

I am smiling because when she was diagnosed at 20 months old, she stopped walking for two months. For two months, my baby did not move unless I moved her. For two years, I had to keep her locked inside this house, to keep her safe. Grass stains were not on my radar. Grass stains have never before existed in the world of Sarah before this. I have cleaned a great many stains out of Sarah's clothes in the past two years. Various chemo drugs, urine, blood. Never grass stains. So those scratchy patches of green on her knees are welcome in my eyes, because we have earned them. Those stains are a badge of honor, a rite of passage that most mothers take for granted and even complain about, but I smile because those stains are a victory, a step toward normalcy for Sarah, a small step toward being like other kids. It may not seem like much, but you have to take what you can get.

I talked to this mother, I give her my advice, and I realize that I myself must follow it. I need to be present for my daughters and revel in the little things because these are the things that are so easily forgotten but that matter so much, at least to those savvy enough to pay attention.

The kindness of strangers...

Okay, so I know it's been awhile since my last blog (forgive me, Committee, for I have sinned!) but there has been a lot going on. Sarah coming down off of the methotrexate, plus being three and spoiled as hell, has made her super crabby for one, and we are working very hard to get the diva out of her. There has also been some minor drama, nothing that couldn't be dealt with, just enough to keep me mildly stressed as usual and away from the computer.

Amidst all this stress, I decide to decompress one day a few weeks ago, and I decide to go on one of my famous web-hunts (well, they're famous in this house). Here's how it works: I get a crazy idea or see a commercial for something my already-too-spoiled little princess just HAS to have, and then I spend hours searching for it on the internet until I find one at a reasonable price. Well, only sometimes does it take hours, but you get the point. Ironically, although it sounds like a lot of work, it de-stresses me, takes my mind off things, gives me something frivolous to focus on for awhile. So I was on such a hunt, this time for a special edition mini Lalaloopsy doll that was coming out for Easter, which I thought would be perfect for Sarah's Easter basket. She has been through so much this year, and I thought it would make her happy to see it in her basket. The doll was only available at Target, and I had already looked at the two stores in my area, nothing. So I turned to the Lalaloopsy facebook community and posted a simple query: does anyone know where I can find this doll in our area? I just didn't want to be driving around on a fool's errand when i have precious little free time, you know? So, I posted it.

Then, impatient little monkey that I am, I went on ebay, found one that wasn't outrageously priced, and just bought it outright. There, done, hunt over. Imagine my surprise when someone offered to send her one for free on the spot! Sure, I had one coming, but now she would have two little bunnies to decorate her basket with! I was overwhelmed with gratitude and appreciation. Then another person offered to send her one, then another. By this time, I was in shock! And tears, too, truth be told. It has not been an easy ride, and I have had a small handful of friends and family that I have been able to depend on, no questions asked. It made me feel like I wasn't alone. The topper on the cake? The lady I bought the doll from on ebay sent me a message, cancelled my paypal transaction, and sent the doll to Sarah as a gift. In all, Sarah received eight mini Lalaloopsy dolls, including the one my mom bought prior to all of this. She carries them with her everywhere in her Peter Rabbit bookbag and plays with them all day long. It made her Easter, which is good because it rained and that put a damper (so to speak!) on the Easter egg hunting...

It's nice to know that people care, even if you've never met them, that in this world where everyone is talking about Lindsay Lohan, and why she can't stay out of jail and/or rehab, Kobe Bryant and why he can't seem to keep his nose clean and his mouth shut, and Charlie Sheen ('nuff said...), that there are some parts of the world that have not gone completely insane. During this whole process with Sarah's cancer, you would be surprised to know that people are not always kind and generous, even people you think you can count on. People can always surprise you, both in good ways and in bad. The people you thought for sure would be there aren't. and even worse, sometimes they even add insult to injury, like I'm not going through enough. And then there are times like these, where you start to believe in humanity again, where people surprise you in the best of all possible ways, by showing you how generous and kind their souls truly are. Thank you, April McDonald, Yvette Galvez, Melissa Pelletier, and Margo Nuno, for reaching out to a fellow human being in need and making a little girl's Easter "eggstra" special! (Sorry, but I had to...I HAD TO!!!) :)