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!!!) :)

I know, I know...

Okay, so I know, I totally effed up the new year's resolution thing, and it's only March, but I think I have a pretty good excuse! It has been a CRAAAAZY three months! But tonight, Miss Boots has declared that she is sleeping with Ama tonight. I am rendered completely unnecessary, and I don't know quite what to do with myself. I should be threatening Sarah to sleep right about now ("I'm going to turn off the tv...okay, then go to sleep..."). Now what? Oh, yeah, that thing I said I would do...

It's been a crazy ride, and I have blogged about all of it in my head at least a dozen times, but can never quite get a chance to sit in front of the computer uninterrupted for long enough to get my thoughts down. The doctors have changed the protocol for leukemia patients, and Sarah got another cycle of chemo thrown in, which includes pumping her full of toxic chemicals every other week during a scheduled hospital stay. Not exactly how I would like to spend every other weekend, but hey. Miss Boots has gone through it all right, except for the mood swings. Now, the doctors have assured me that moodswings, especially this violent, are not supposed to be a side effect for the medication they are giving her. But fatigue is. And Sarah wouldn't take a nap by choice if you paid her, so she spends all day fighting her fatigue, which makes her cranky, and I get to hold her down as she thrashes and screams, remain calm while she screams the ugliest things that every parent dreads they will one day hear from their children, and be ready and willing to forgive with open arms when she is ready to apologize. It has been hard, and then there is the break in routine I discussed in a previous blog, only now it's worse, because as soon as we get settled and back on track, it's time to go to the hospital again. Thankfully, this weekend should be the last hospital stay (scheduled, anyway) and then she should go back into maintenance when things should settle down tremendously.

Another thing keeping me busy and off the computer during my "free" time? Beads of Courage. Beads of Courage is an organization that gives beads for every thing the child goes through while undergoing treatment. Every time they poke her, every time she goes to clinic, every time she gets chemo, every physical therapy appointment, every transfusion, gets a different colored bead, and it all gets added to a necklace that is a Telling Rope of sorts that will help Sarah to tell the story of all she has endured. A beautiful concept, really, poetic and inspiring, and heartbreaking in its simplicity and depth; however, it would have been more convenient for me had they told me they were going to do this in the beginning of her treatment so that I could have kept a diary or at least kept better track of her records. Instead, they tell me almost TWO YEARS LATER, and now I have the fun project of digging through two years' worth of incomplete paperwork (I stopped taking some of them after awhile, there were just too many) to tally how many times she has been in the hospital, for how many days, how many times they have poked her, etc. My final tallies are guesstimates at best, but it's better than nothing because I really want Sarah to have her necklace, even if it isn't entirely accurate. She's just going to have to forgive me for that, among all of the other ways that I fall short.

I have also been spending more time with my daughter, working on math and reading concepts, and she is really doing quite well for a three year old. Sarah now knows half of the alphabet out of order with their phonetic sounds, and can count to 15 without help, to 20 with help, and can recognize her numbers up to 10 out of order with 90% accuracy.

The novel, the diet, the exercise, all have fallen by the wayside, but they are ever present in the back of my mind, the novel especially. I am constantly making little notes, reading books that could possibly inform me better of the time period, or the social setting, little tidbits here and there as far as plot and storyline, but no actual work yet.

The blog seems more do-able as far as writing goes, and there are a few things still that I want to document, little significant things that have happened, but as they are so varied in nature, it would seem too disjointed to add them here. Another blog, another day...I promise...

The hospital...

So, I haven't blogged in awhile because Sarah ended up in the hospital for a fever, yet again, and I was away from home for about a week. We have been home for a week, but it always takes a week to get Sarah back into her normal routine. I have heard tell from the nurses that this is the case with many parents who call the hospital their "home away from home" as we do. Bottom line, the hospital is sort of a vacuum, an alternate universe where time does not exist. Unless she has a roommate, Sarah can be up at 3 am, eating, and it's perfectly okay because she's not disturbing anyone but me. The nurses find it endearing, because they slept all day. I even find it endearing, because I have learned that when in the hospital, it is best to go back into "newborn mode"...sleep while she sleeps, or forever hold your peace...Then we get home, and it's not so cute when she wants to eat at 3 am, or when she stays awake until midnight when i have to get up at 5 am...

Not that we were getting that much sleep in the hospital. Because of her fevers, Sarah gets her vitals checked every two hours. If she has a fever, she gets Tylenol every four hours. Now, Sarah is so used to this that she can sleep right through it, blood pressure, temperature, even the meds. But me, they have to inform me of everything that's going on, which I appreciate, but it's not doing much for me by way of sleep. Now, most nurses are stealthy as ninjas, come in, do what they have to do, silently and in the dark, and leave without you ever knowing they were there. Some will even change the baby's diaper. This is the best kind of nurse, the kind I thank God for every night in my prayers. Then, Lord bless them, there are the kind of nurses that seem to crash into everything, make as much noise as possible, and wake me up needlessly to tell me unnecessary things. "Mrs. Gomez, I left her medication right there so you can give it to her when she wakes up." Um...yeah...if she doesn't need to take it NOW, why the @#$% are you waking me up? I will wake up LATER, make her take it LATER, and if I have any questions I will call you! Jeez...I don't know whose brilliant idea it was to make the staff play Skip to my Lou, (for some reason, they make the nurses rotate every so often now, so nurses from other floors and departments work in Oncology now) but it was a HORRIBLE idea! These are usually the nurses who wake me up, give me useless information, and enforce stupid rules from other floors onto me.

So, a week of this, and Sarah is happy as a clam because they treat her like a princess and she sleeps whenever she wants, and Momma is ready to kill everyone because I'm missing a week's worth of shuteye. Then, God smiles down on me, and we get to come home! Yay! But Sarah is not so happy because she knows that as soon as we get home, things go back to normal, and that is not good.

So here we are, a week after being home, and only tonight did I get Sarah to go to bed on time and stay in bed. This whole ordeal with getting her to sleep would be HILARIOUS if it wasn't happening to me. It goes a little something like this lately:

8:00 pm-I start warning Sarah that it's almost time for her bath, so it's last call for snacks and playing. She throws a fit, screams "NO!!!!" then throws a Barbie or two across the room, and today, as an added bonus, she threw a chair. Lovely. I make her go to her mad corner, she goes, comes back two seconds later all smiles.

8:15-I tell Sarah it is now time to pick up her toys and get ready for her bath. Again, she screams "NO!!!" throws less toys than before, but still throws at least one, then bursts into tears and cries, "I don't WANT to take a bath!" I ignore her, she gets the hint and begins to pick up her toys, then announces proudly, "I did it, Momma!"

8:20ish-Meds, then we make our way to our room, where she starts playing with the toys in there, while I pull some pajama choices out of the drawer. I ask her which, she ignores me because she is playing with her toys. I give up after asking her three times to come and choose, and pick a pair myself. Sarah comes along, and says, "No, Momma, not that one!" Grrr...

8:25ish-Sarah picks out three or four books she wants me to read, NOW, when she knows story time is after bath and before bed, and I have already told her five times that she gets only one book before bed. She relents without a fight, (thank GOD!) and chooses one book. She picks a towel, makes me put it on my head, and we march in a line toward the bathroom.

8:30-I give Sarah her bath, which takes five minutes for all practical purposes, but thirty minutes while she plays with Creepella and the other mermaids.

9:00 pm-I pull Sarah out of the bath, put her pajamas on, brush her teeth, all the while trying to move fast enough to match the commands she is barking at me like this is Baby Boot Camp. "Put cream on my belly! I need socks! Where's my chupie?!"

9:05-Storytime...I read one book, preferably a short one, and Sarah is content. I finish, announce bedtime, and she insists on another. Not wanting to curb her enthusiasm for literature, I relent and read at least one more book, then end up reading the whole stack she picked out before her bath. Sigh.

9:15 (if I'm lucky)-Sarah finally climbs into bed, I cover her up, give her a hug and a kiss, and make sure she has everything she needs.

9:16 "I have to go potty."

9:17 (in the bathroom still) "i'm not done yet!" (She has been sitting there doing nothing, wants to chat, read her books, all of which I have denied, then get fed up and try to pull her off the potty.)

9:18-Sarah gives up, we wash up, replace the pull-up she has already peed in (regression in potty training is another lovely side-effect of our hospital stays), and I settle her back in bed.

9:20 "I want chocolate milk."
9:21-After a short argument, I make my way to the kitchen for the @#$% chocolate milk...
9:22-Sarah is quietly drinking her chocolate milk
9:24-"My legs hurt. I need Vick's."
9:30-"My tummy hurts."
9:31-"I have to go potty"
9:40-clean up and back to bed after another fruitless potty attempt.
I could go on, but imagine another THREE HOURS OF THIS, and finally, she drifts off to sleep around midnight. Keep in mind, if I deny her anything she has asked for, she throws a screaming fit, which gets louder the longer I ignore it, but ignoring it seems to be the only way to get it to stop. Being forceful only seems to escalate it. So, needless to say that by midnight, I am EXHAUSTED!!! I think she's worn herself out, too, because tonight she went down without a fight and has stayed asleep the entire time, and it is now 11:30. Success!!! Only took me a week...but now I can't sleep! Hence, the lengthy blog...oh, well...did I mention that she is not only asleep, but in her own bed? I suppose I should be thankful for the little things...and get to bed before she decides to wake up! :)

Roid Rage...

Okay, so I know I haven't been holding up my end with the blog this week, partly because I had writer's block, and partly because Miss Bear-a was on steroids this week, which is not fun, at least to those of us in the fray. To an innocent bystander, someone outside looking in, this is probably freakin' hilarious! The steroids are a part of her treatment, and necessary so that she'll grow properly, but it seems unfair on so many levels that once a month I have a little tiny Hulk on my hands...

The best and worst part are the cravings. The steroids make her RAVENOUS, and give her the strangest cravings. Last month, it was spaghetti. The month before that, red pepper hummus and Fritos. Before that, my garlic mashed potatoes. This month, Mac and Cheese from El Pollo Loco. I tried to make her "real" mac and cheese using my handy-dandy Betty Crocker Cookbook from the 70's, and apparently, it "did not taste very good" (although Daddy liked it just fine, so I don't think it was me). So, I spent about $60 buying sides of mac and cheese from the drive through, going about every other day, because, call me crazy, I thought buying FOUR SIDES AT A TIME would last her awhile! Yeah, try two days, at best. This is the way it works. You buy her "flavor of the month", and lots of it. You give it to her three meals a day, because she refuses to eat anything else. By the end of the day, she has a big round belly and she is waddling all over the house and yelling at everyone like a little tiny pregnant person. To an innocent bystander, hilarious! To us, not so much...

Then there are the moodswings. Lovely, lovely moodswings. One minute, she is kissing my face as hard as she can, telling me I am the best mom ever. EVER. The next minute, she is throwing a Bible at my head, because she was tired of holding it.(I am NOT kidding. I half expected her to yell, "I am FILLED with Christ's love!!!" :))

Now here we are, at the end of the week, she is at least five pounds heavier, and she is having trouble walking and breathing. Not good, but the doctors all assure me that it's normal, that it will go away in a few days once the steroids clear her system and she goes back to her normal eating habits. The weight will come off, they assure me. Her face will lose the swollen, puffy look. My little girl will come back. Until next month, when the steroids come around again...

Miss Boots, so grown up...

My baby girl is growing up. This year, I resolved a lot of things for myself, but I also silently resolved some things for Sarah now that she is three: This year, she will give up the "chupie". This year, she will learn to sleep in her own bed, for the entire night. This year, I will train her to go to sleep without being rocked. She will learn to pick up her toys without a tantrum or a fight, or one of us having to go to the "mad corner" (the self-designated time out spot where Sarah goes to pout whenever something doesn't go her way. I think I have the only kid, ever, who puts herself on "time out"). A lot to ask of a three year old, I know, but most of it I believe is not unattainable, and most of it is long overdue.

Like the "chupie". Ah, the "chupie". It doesn't seem all that long ago, on the day that she was born, that I was the one that put the @#$% thing in her mouth in the first place, to quiet her, to get her to sleep just a little longer, and let's face it, in a newborn, chupies are just plain adorable. Not so much in a three year old who just holds it in her mouth all day, like that lady you see with the cigarette that forever dangles off the end of her lip, and she never smokes it. It's just there. Sarah has learned to talk around it, which is both impressive and a concern because a lisping three year old? Adorable. A lisping seven year old? Still adorable...a lisping twelve year old? Not so much...

The same is true for the co-sleeping. All my fault, and something Mike and I both gave in to just to get a little shut eye, which was cute and snuggly with a newborn, not so much when she's three and tall and used to sleeping like the letter H. Love her little feet, but they're not quite as adorable digging into the small of my back at 3 am. So, yeah, Big Girl Bed.

How is my little girl coping? I'd have to say, surprisingly well. The first night, she screamed her head off, and refused to go to bed because I refused to rock her, and my mother thought we were murdering her. The second night, she sat in the bed but rested her head on my shoulder until she started to doze. Tonight, she did the same, and now she is sleeping like, well, a baby! It may not last, but eventually, she will catch on. If it means I get to hold my baby a little while longer before she's gone, one more hug, one more kiss, one more, "I love you , Mom. Happy New Year (she has trouble getting over holidays)." Well, who can argue with that? 

St. Jude...

I was channel surfing in a rare quiet moment this evening, and I happened upon an infomercial for St. Jude's Childrens Hospitals. I knew what it would be about. I knew I would probably cry. Why I feel the need to watch things like that whenever I happen across them, I don't know. Maybe I find it cathartic, like I have an excuse to cry. Maybe I'm a glutton for punishment. Either way, I'm watching this, getting invested in these kids' stories, some Sarah's age, some younger, some older, and in case after case, these kids don't make it. This one little boy's family is having his fifth birthday party without him, with a cake and everything, and then they release balloons for him. This is where I lose it. I feel this heavy weight pressing on my chest, the tears that have been dancing on the brink of my tear ducts spill over, and I feel a panic attack coming on. Why? This isn't my kid. The only thing I know about this kid is what was squished into a minute and a half on the infomercial. This isn't my kid. But it could be. It very easily could be.

Rest assured, I did not have a panic attack (I was able to stop it before it fully started) but for a split second, I felt myself falling. I literally felt like I was sinking, or falling off a cliff, or riding a roller coaster. I felt like I might scream, or explode, or throw up, all at the same time. I only felt that way for a second or two before I stopped myself, but then I found myself thinking, "I was standing at the edge of the abyss, that black hole that is what it feels like to lose your child." I don't know if I would be able to handle that feeling for real, if I can't handle the thought of it now that I still have her, and her prognosis is good. Lets hope I never have to find out.