Tuesday, February 26, 2008

Good Day

Well Scooby Doo! Today went smashingly well all in all.....a welcome change from the past week....maybe, just maybe, it was Anna's comment this morning, as she was dutifully getting herself dressed & ready for school (Miss Ultra-Independent...see! Lazy Parenting Pays Off!):

"Mom....if you have a good attitude, you'll have a good day"

This is the mantra I've been reciting since February 4th, our first day back in this place....I've also been pounding it into Anna's head. She must really believe it now! It worked! Okay, so I had a good attitude (and some ephedrine), and low and behold....same crappy circumstances, different effect on my spirit.

JillyBean is excellent....we are getting pretty smooth at our little Siamese Twin dance-around-the-maypole-thing. I say "STOP!", and she usually listens (yesterday's yank of the line as I lifted her out of her highchair, not knowing the line was stuck under it, may have burned in her brain that if you don't stop, you get hurt..we had to replace that dressing a few days early & now I'm very thankful they taught me to loop it before I taped it to her chest). She has a lot of bruises left over from low platelets on Monday....bruises that say, "I'm a toddler and I KNOW how to have FUN." The PT came to work with her today...had her climbing and jumping and riding a tricycle at lightning speed.....really wore her out. She's worn out plenty enough though with all this Benadryl.....one of the antibiotics she has to be on (for the next 7 days) causes an allergic reaction, so 4 times a day, starting at 8:30am (right about the time she wakes up), she's invited to geeeetttttreaaaalllllygrogggggggggy while teased with "Hi guys! Playroom's open!!" and the sound of happy kids in the hallway. "MUST.....PLAY.....GOTTA....do it.....allllllllll rightttttnowwwwwwwww......" Crabby soon follows but that's immediately followed by intense cuddling while sucking the thumb and twirling my hair with her bald little (FUZZY now!) head in the crook of my neck (YUM!), so it's really not that hard to push through.

My friend Rebecca visited yesterday (with homemade enchiladas...to die for) and a ton of hand-me-down princess memorabilia for Jill (she can't sleep without her Cinderella). Guess we're encouraging this princess business (yeah, yeah, Dina, I know). And today, my buddy Jessica, played with Jill for an hour while I ran to Costco (don't pester me about going, I know 10 of you would've picked up all the stuff on my list, but I actually enjoyed it...late night right before they close is the ONLY time I enjoy Costco), then we hung out and talked while Jill slept....loved it!

I need to hit the hay right now so I can be ready for a great day tomorrow. And if you're wondering if I'm bipolar.....do you even need to ask?

Monday, February 25, 2008

Thanks for the Platelets

They don't tell me when Jill gets "designated" blood or platelets (everything is sooooooo confidential), but I found out today (through our nurse) that Jill's last bag of designated platelets (meaning, somebody came & gave in her name) was due to expire today....she needed them & they are being transfused into her little sleeping body right this minute. So, whoever you are, thank you. A little bit of your life is now part of hers.

Sunday, February 24, 2008

Over the Hump

On the heels of Day 20 for this delightful hospital stay, here is how the past 5 days have gone....Jill's fever, which started on Wednesday and finally went away Saturday, was caused by a bacterial infection in one of her lumens (IV lines)....it was a strand of strep and got into her bloodstream through the line. Could've been introduced from the outside, maybe a line wasn't cleaned well enough before it was hooked up to a med, or it could've just been brewing inside her body & she was unable to fight it this time....it's a common occurence with these kids in this stage of the game, and could be deadly....like, if they hadn't gotten her fever under control (it got up to 104.5 a few times). But they started her on 3 hardcore antibiotics (in addition to the 3 she's been on every day since October) as soon as she spiked & gave her Tylenol and this miracle ibuprofen drug called Trilisite (when the Tylenol wasn't working), which always brought it down. She was pretty miserable for 3 days...not really moving much (VERY unlike her), but is now back to her old feisty self. She will be on all these drugs for at least until Wed (and if blood cultures are still positive then, for another week)....we don't know when we'll be leaving this time, but likely no sooner than Wednesday, and even more likely, longer than that.

My thanks to all the people who responded to my cries for help. Even saying you can't but wish you could, meant a lot to me. Thanks to those who offered help right away and to those who came to keep me company while I struggled with being stuck in here. Lisa, thank you for lunch & your great company....Jamila, thank you for offering to stay with Jill all morning, if she hadn't been so sick, I would have taken you up on it in a heartbeat..I have your email, you'll be hearing from me, BET :)....and Kristen & Michelle (who stayed for 5 hours!), I enjoyed our crazy conversations more than you know :)

As hard as it is to be here, there of course are bright spots....the other parents we are in contact with daily, and the wonderful nurses and Child Life friends. Wow. I feel I've established life-long friendships with a lot of these people (probably every parent feels that way), but I truly look forward to the days when certain nurses are working :) One, in particular, who works nights always makes me feel like I can do this. We don't spend too much time talking about "this", but she just is so sweet and loving and compassionate, and well-intentioned and FUN (and one of Jill's hand-down favorites)...I just really feel better when she's in the room. I couldn't do this if I couldn't talk about it every day with SOMEONE face to face. They make me feel I can (and should) do that. Although, I have to say, that it's trying to be having a hard time with so many people around. People who I usually talk and joke with....when I am feeling hurt or tired or angry, and can't keep it under wraps, I almost HAVE to broadcast my feelings because I'm living in a fishbowl. Bawling on the phone with Matt about the state of our union, having people walk in and out every 20 minutes to start/stop meds, check lines, take vitals.....man, nothing is personal. And sometimes I really want it to be. I don't like being the one whose problems are everybody's business. Yet I open myself up for that with my personality being what it is.l No one ever asks Matt what's wrong when he's quiet...he's always quiet. When I'm quiet, "Oh my gosh, what's wrong? You're not smiling...are you okay?" Maybe I should stop smiling. Take a page from a pensive person's book. Introvert. Stop laughing. I could do that. I could try. So next time you see me sulking, just keep in mind that maybe that's just "how I am" and go on about your business. Man, why does this have to be all about me??? Focus change.....

Anna has been playing basketball for the past month or so and she's kicking some butt (with her effort, at least). She's learning how to dribble and to stand her ground with those pushy boys. The only girl on the team has the strongest personality...nothing shakes her. I'm so proud of her. The situation we're in continues to be really hard for her. She wants nothing more than to have us all together in the same place all the time. She wants mommy & daddy both to come to her games....both to sit at the dinner table with her...both to tuck her in. This must be what separation/divorce feels like to a kid. It's so terribly sad, yet we find ourselves getting so exasperated with her over her reaction to it. Because we are doing our best and we can't find a way to make it any easier for her. We've debated sending her to Missouri for a week during Jill's last hospital stay, to give her a fun adventure, playing with her cousins & being with her grandparents every day, while relieving some of the stress we feel having to get to her....but we're torn....would she feel abandoned? Sent away? Unloved by us? Would we feel terrible with her being gone? Guilty? Sad? Regretful? Anyway, I wish we could meet Anna in 13 years so she could tell us how she wished we had done this or that differently....save her some scarring, but I feel that whatever we do we are destined to screw up our kids in one way or another. I know every thing that is wrong with me is MY mom's fault (sorry, Mom)...that's just they way it usually goes....the one we love the most, that meant the most to us, that was most instrumental in our upbringing, is usually the one who gets blamed for things when they don't work out. I'm also sleep-deprived, so maybe it's just that.

Jill is still into her play-acting. I bought her a Princess Theater book so she can act out 3 plays with paper dolls, and she DOES...with incredible accuracy, and inflection (I might actually try to get her in commericals when this is all over with). My favorite is the scene she plays out over and over lately....she is the Prince, and I'm Snow White. I lay down & close my eyes, and she kisses me on the lips (I'm the only one who is allowed to do that by the way...ha, ha!). I wake up, she says, "It's twue yuv's fuhst kiss!" and we get married :) My Prince is asleep now...I think I should follow suit.....

Wednesday, February 20, 2008


I'm so tired. Jill has woken up a few times since I finally got her down at 11pm (we were waiting for blood, so I kept her awake, but Matt reminded me of the burst of energy she gets from Red Blood Cell transfusions, so I asked the nurse to hold it till the morning). I think her tummy hurts, but I can't tell why. The nurses think we should just keep an eye on it.

My birthday was such a flop. Why do I care? I'm 33. I don't know....my birthday has always been important to me (I'm selfish that way..can you tell by the way I write?). Anyway, it began with the night before...Matt & I went to see "Juno" while Aunt Annie stayed with both girls at the hospital. That would've been great, but we got into some little spat about him not listening when I talk (I'm sure he had a side, but he's not the one blogging, so I win this one), ended up back at the hospital not speaking, and he & my aunt left. Anna was staying the night IN THE HOSPITAL ROOM for the first time (a big no-no, but the friend she was supposed to stay with overnight had a fever....Matt had to take Annie to the airport the next day at 5am, and there was no way we were going to ruin Anna's day like that..she is a BEAR in the morning and needs her sleep)......so I spent a good part of 2 hours trying to calm Anna down because she missed Daddy & didn't want to stay at the hospital (even though she was super hyped about it 4 hours earlier). I resorted to ignoring her, like I usually do, then barking at her about pulling it together, this is hard for everybody, deal with it......nothing works. I don't know what the hell I'm doing (obviously). Jill was weepy too....she's been out of sorts the past few days....just crabby and argumentative (hmmmm..I wonder who she gets THAT from.....), so I finally get them to bed....Jill in her lovely jail-style crib with the sides that could wake the dead (and they do, 5 times a night) and Anna in her tent on the mat, when the maintenance guy comes in.....you know, the one we called at 4pm to say our sink was backing up. It was 9:30 pm. I was so done. He says, "It'll only take a minute". He plunges like crazy, then something black crap goes flying into the air and splatters all over the mirror (and my toothbrush)...."This might take longer than I thought...." He gets down on hands and knees, opens the cabinet doors and starts pulling on pipes...."It's gonna smell bad....." Woah woah woah. "Wait. Should the kid with no defense mechanism be exposed to sewage right now?" He says, "Maybe you should ask your nurse. I can wait...." Nurse says absolutely not, leave the room. So everybody UP.....can't find anyone's shoes, they're both crying, Jill is now hooked up for her overnight fluids, so I'm carrying her while dragging a very bent out of shape Anna (who isn't used to late nights) down the hall to the playroom where we compete for quiet with video games and dirty children of visitors. One hour later, we're back in bed. They sleep great. I get nothing. Very tentative nurse who moves like sap dripping out of a tree (the kind that's TAPPED....Annie, that's for you :) and can't figure out how to lower the crib sides to save MY life. Leaves the door wide open when she comes in to slowly do her noisy thing, so I've got light in my face and loud guffawing/doors slamming/beeps beeping/drummers drumming (okay, maybe that didn't happen, but it sure sounded like it) every 2 hours or less. Oh yeah! And don't forget to test the fire alarms at 5am (like they do every other day at random times) for 30 minutes!! God help us if there is every a REAL fire in this place (more on that later....). On to this morning (or would that be yesterday morning at this nearly 3am point?)....my stupid birthday. How fun could I have expected it to be with Anna here? She and Jill together in a restrictive environment is a recipe for disaster. Every rule they can break, they try to, or complain loudly about how it's not fair that we can't climb onto the windowsill to watch the workers pouring ashpalt outside (which, coincidentally, I can smell....HEPA filtration, really???). No really, it wasn't that bad (for brief periods). They did okay (thanks to CiCi and Alison....nurses' aide & Child Life Specialist) who I think could read the look on my face ("take them for a few minutes or I'm bolting"). They both napped for an hour so I researched more on leukemia and found stuff that just made me cry. Maybe I was crying though, for other reasons. I cry all the time now. I didn't cry much in the beginning. I'm just so dang tired of this life. I read other people's blogs and they are so uplifting....maybe mine was even last month, but man.....I just can't do this anymore. Have to. Can't. Have to. Okay, have to. I just sent out an email begging for volunteers to relieve us for bits of time, but feel like crap now for doing it.....why can't I do this on my own? It's almost over right? It could be so much worse......wait, back to fire. So someone set a bagel on fire in the microwave (and never owned up to it), so as the girls are napping, I'm smelling this pungent awful death smell and getting so riled that we are inhaling asphalt from right outside our window (she would be so much safer at HOME)....I get off the computer, storm out into the hall and am engulfed in this creepy haze...."Somebody burnt something in the microwave," the secretary reports, "They're bringing up fans". I head back to the room, put a blanket in front of the door and shake my head in amazement at the circus I'm in. Matt shows up shortly after nap. I'm excited to be going home soon (after he spends an hour of one-on-one time with Anna in the Starlight Room...room for siblings to play when visiting, if they need a break from the unit). I'm thinking, "This time with Daddy will nearly ensure that Anna is cool with me for the night, although I'm never her first choice". Nope. She comes back to the room all excited and happy. I say, "What kind of night are we going to have Anna?" She says, "A great night!" I say, "Okay, say goodbye to Dad & Jilli." She looks stunned. "I thought Daddy was coming home.....(face gets all contorted)....I don't want YOU I want my DAAAAADDDYYYYYYY!" I'll delete the next 5 minutes so no one tries to committ me to the psych ward (I don't have time for that right now), but suffice it to say, I was pissed. I wanted to go home so bad. That was the only thing I really wanted on my birthday. To not be here the whole day and night. To get some good uninterrupted sleep. To get that burnt flesh smell out of my nose and eyes. Matt tried as hard as he could to calm her down, talk her through it (that's why he's the good guy). He even told her in no uncertain terms, "Anna, it's Mommy's birthday. She's going home with you," but honestly, I would have much rather stayed in this dump with a kid who enjoys my company than one who wishes I were the other parent. And truthfully, I would not have made that night fun for her. It was best I stay. So Jill and I ran around acting out our plays and discovered that if you hold the big bubble wand in front of the HEPA filter fan, you can totally fill the hallway with bubbles!!!!! That was cool....everybody who walked in those double doors for the next 40 minutes was greeted with happy. How can you not smile when you walk through a sea of bubbles????

The floor is full (we had 11 patients 2 days ago and nearly 24 today)....it is bustling and loud and a crazy zoo here. I will be very tired tomorrow morning (but what's new?). I have my happy baby and a few slivers of sanity left. For those who have marvelled up until now how I do this? You see?? Do you see?? We all knew it was coming.....

As Seal so marvelously puts it, "We're never gonna survive unless we get a little crazy". Oh, I'll be survivin', then. I'll outlive 'em all.

Saturday, February 16, 2008

My Aunt Annie has been in town....one reason I haven't posted in awhile. It has been great having her here. She is healthy (no fault of her own) & fun & very helpful. She quietly anticipates every need, and fills it. The girls adore her....especially Jill (she calls her Auntie Annie). She stayed overnight with Jill on Friday. Matt & I took Anna to her bball practice, then to McDonalds, then dropped her off at James & Mikayla's house for a sleepover. After Matt & I devoured the best dinner I've ever eaten...I mean, seriously, IN MY LIFE (compliments of Renee, who prepared a special Valentine's Day Menu rich with chicken salad on endive, crab stuffed mushrooms, crustini topped with mozz & basil, a light strawberry salad, and orange-liquer infused chocolate-covered strawberries, with rasberry sorbet for dessert), Anna called to say she wanted to come home. It was a short date, but we needed it. It's so hard not being able to talk to each other about anything but schedules & sickness (and moldy floors, which Matt has been working on today with our good friend Jim...thank you!).

Anna needs more good attention. We spend so much time rushing her & telling her what NOT to do....and ignoring her positive qualities as we make over Jill's, how could she not be hurt? One of the nurses made a comment today that she was watching Anna's face as a million people were making over Jillian in the hall the other day..it's like being Angelina Jolie's sister. Who cares about how wonderful Anna might be, look at THIS one! I'm trying, but not as hard as I should or could, to give Anna the love she deserves. The lack of sleep & energy this place zaps out of me makes it very very challenging.

Sunday & Monday will be spent with Aunt Annie. Starting Tuesday 2/19 (yep, she's leaving me on my birthday, sigh), we once again, welcome visitors....just call first. We were moved to a single room today (the census is low & Jill has a bit of a cold, that they think may turn into something greater, so while they have the room, best to give it to her just in case she needs to go into isolation soon....let's pray she doesn't, but either way, I now don't have to leave the unit to go to those stinky yucky bathrooms, and we can sleep with fewer interruptions, although we will truly miss rooming with Christian. I told him we were moving out today....I said, "You get your own room!" He said, "I wish not", but he brightened up when he found out he could now move to the window! It has been so excellent having him & his family as roommates. We spent all last week every day with our curtain pulled back all the way (at his request, for the light, and the company). It made the room look so much bigger & brighter....his visitors were OUR visitors, and vice versa....we shared many stories & laughed a lot. It was so so so nice to share this journey with them for a little while. Things that may have been slightly aggravating coming from other people, didn't phase me at all when they came from Christian's camp, because they were like family to us. Christian's grandmother, Carmen, especially touched my heart with her love for God & positive outlook on this situation. She considers this (as I do, most days) a blessing and thanks God for choosing her & her family to receive the goodness that just oozes from others who are touched by Christian's story. It is hard, no doubt. But this is life and we are living it in a way that not many people have to (get to?) do.

A friend of ours came out with her son last week to meet Christian. Aaron is the same age & just got a mohawk for the occasion. He is slated to become a bone marrow recipient on Feb 25th. His older brother is his donor. I am so impressed with Mary & her son for their courage and ability to touch other people even in the midst of their ordeal. I asked Mary to bring Aaron to Christian as I thought it may make Christian less scared and realize he's not the only one who has to face such a scary thing. I was so impressed with how it turned out. Aaron brought Christian football trading cards & a nerf football (which he passed around with Jill the next day, even teaching her how to throw it down for a "touchdown"), of which Christian was thrilled...the boys played video games and talked....Mary even brought Aaron back the next day bearing Taco Bell. That day Mary, Leslie (Christian's mom) and I sat and talked for an hour or so about our experience. We all agree that we have been picked for this, because someone thought we could handle it. I need to keep reminding myself, that no matter how hard this gets or how endless it seems, it's a sliver of time....and NOT an impossible hurdle to overcome. As happy and energetic as Jill is EVERY DAY, I have no right to complain.

I have had so many other cathartic experiences this week.....I may delve into them in this forum later, but now, I must get some sleep so tomorrow, I can keep up with my little "sickie".

Saturday, February 9, 2008

My Mom is So Boring!

If you are free of illness (and there's none currently raging in your household) and you are up for keeping up with a crazy kid on chemo (I was telling someone today that I couldn't believe Jill's energy because...and Jill went, "I'm on KEEEEMO!" I died laughing....she kept saying it...."I'm on KEEEEMO! I'm on KEEEEEEEEMO!"), allowing for the fact that she may crash soon (although she's eating more at this stage of the game then she was last time...I think she's trying to prove something here), then, please, by all means, come play! Don't worry, I won't leave you all by yourself, but welcome (as does Jill) the change of scenery. And right now, there ain't none, so peoples got to do. Sept little peoples, cuz they dot too many derms.

I've been imitating Jill's speech a lot lately TO her.

She says, "I donna sigh." I say, "You donna sigh?" She says, "No! I donna SIGH!" I say it again....she gets really mad. "I said 'I donna..." "Cry?" "I said dat, Mom! I said SIGH."

Much thanks to Melissa (beeeeeutiful friend of Jill's, just diagnosed in Jan) who gave Jill lots of fun goodies (both girls love the blanket/backpacks....thanks Teresa!) and visited with her a little today.....she's not feeling so hot, so please, everyone, send her Happy Vibes.......Thanks also to Nika (a 2 and 1/2 yr old buddy, also diagnosed in Jan) who came to visit Jilli after her treatment and gave Jill a Cinderella dolly.....Jill LOVES it. Matt says she didn't put her down all day! We are so impressed with these two families and their strength. It is inspiring.

To our dietician, Shahin who loves Jill to pieces and gave her the CUTEST little outfit the other day.....and nurse Colleen for the Sharpay doll with microphone, that sings "Fabulous"....WOW. How did we get so lucky?????? As hard as this hospital business is, it sure helps that Jill's medical team genuinely care about her so much. Thank you all.

I just have to say, also, that the roommate situation couldn't be better. Christian is SUCH a wonderful human being.....he lit up the first time he saw Jill (he has a 2 year old sister at home, whom he misses terribly & his mom told me today that having Jill around kind of helps to fill that void) and has been her little buddy ever since. I leave the room for a minute, with Jill "safely" locked in her crib and Christian pulls the curtain back so she can see him & tells her not to worry, that he won't leave her side until I get back. He quietly giggles on the other side of the curtain sometimes when she babbles away like a looney, and is soooooooooo respectful of the space we all share. Jill takes a 2 hour nap every afternoon, and although we haven't and wouldn't ever request that our roommates respect that "quiet time", Christian just does. He offers to turn his tv down if he thinks she's ready to sleep and told me the other day, "You guys respect me, so I respect you." I LOVE this kid! Although I want him to go home soon, I really don't want to lose him & his family :( His parents are amazing people. They need our happy thoughts and prayers, too. I will be posting upcoming fundraisers on this site for all of our new friends from Millers. Many will be things like dinner.....if you're going out to eat anyway, might as well give part of that check to a family in need. We are eternally grateful to each and every one of you for all of your support thus far. We trust that if you can help our friends, too, in little ways, you will.

The circle of love just keeps growing.....with every tired limb, a new one sprouts in its place.

So to wrap up (and emphasize the beginning of this post), if you've been staying away because you're sick and now you're not....call me! I miss you! If you've been staying away because I drive you crazy, well, then.....hmmmmm.....I guess that's that. 310-748-4378 (No unsolicited calls yet....guess it's only a matter of time. Oh well, maybe they'll come to the hospital! Sniff, sniff....)

Wednesday, February 6, 2008

Here we go again....

We were admitted last night, very smoothly, thanks to Renee, for making us tortilla soup & fruit parfaits (does your creativity have a limit??), Matt for leaving work a little early so I wouldn't lose my mind, Kristin for playing with the girls at the park while I ran errands, Alyce for all the fun goodies (love the Hike for Discovery info sheets....you did a fabulous job...I am definitely doing this NEXT time....and the girls were super excited about the fairy godmothers, dwarfs, Ariel & Tinkerbell....some fights ensued, but no blood was shed), Karen, Heather & Pete for helping us move our stuff in and Heather for making the most spectacular leafless salad I've ever had in my entire life (I need the recipe....NEED the recipe), with warm pumpkin bread, and Janel for getting us a private room and our favorite night nurse. Unfortunately, we lost our private room this morning, just after I unpacked the last little thing. Some kid had a fever or something & needed it....we have been spoiled to have one so much, actually, so.....at least it's on a B side (close to the window) and our roommate seems pretty quiet. He's 9 (one of 4, and mom is pregnant), and currently playing video games in the playroom while Jill sleeps. She had her bone marrow biopsy and spinal tap this morning, and despite taking an extra long time to come out of her drug-induced stupor (she was still tripping over her own feet and swaying while standing in place right before nap...a good 3 hours after being sedated....a little odd, I think), all seemed to go off without a hitch. Okay, so guess that's that. I thought this day would fly by, but its slowly creeping, and I think that's because of my attitude. I've been dreading this visit...I've been telling myself (such a glutton for punishment) that this round will be the hardest because we're far enough in now that the adrenaline rush of "let's do it" has passed & there's nothing left to troubleshoot, really....it's just the same 'ol annoying crap & I'm ready to get off the crazy bus, now. And it's not the LAST one......with the last one, you can be like, "it's almost over...it's the LAST one!" (sigh) Attitude must change if I am to get through this next month without going batty. Hard to do, but not impossible. Helps that today is Ash Wednesday, a day of reminding ourselves that (apart from the fact that we're all big sinners) life is short and no one is immune to death, so we should value our time here and use it wisely. It never fails that as soon as I feel I can't take anymore....I am reminded of how this is just another bump in the road & how everyone has them....some are bigger than others, and it's all relative.

I will now be moving on. Moment to moment.

Monday, February 4, 2008

Round Four

We will be admitted to Miller's once again tomorrow night (Tues) at 8pm. We're looking for one or two people to help us move in....around 8pm, either meet at our house & caravan over with Matt following me & the girls (and the STUFF), or meet us at the hospital just to help carry stuff up & get us settled. Anna seemed to benefit from going with us last time, so it's kind of hard to attend to the kids while we're lugging suitcases & bins....it takes way long for just one of us to do on our own. Any volunteers? Call me 748-4378.

Sunday, February 3, 2008

'S all about Me

Okay, so I'm really ready to get back to business & get this cancer thing taken care of once & for all. We've been home for just over 2 weeks now. A good thing in that Jill has been getting stronger & stronger by the day (not that she's really all that weak, even on chemo), she has gotten to spend a lot of quality time with her sister (albeit a lot of it has been with her teeth in Anna's shoulder, back, or chest....I tell Anna repeatedly, if you don't want Jill to bite you, don't say, "Okay Jill, I'm going to try & catch you & when I do, BITE ME."), and we have all had the opportunity (although some of us are too stupid to take it...that would be me) to get really good sleep without the constant interruption & discomfort of hospital life. But I'm so incredibly bored. We have gone a few places, but for the most part, have stayed indoors & laid low. The doctor questioned why we were keeping Anna home from preschool (she only goes 2 days a week now, and we actually only kept her home 2 days...she returned last week) & we reminded her of the dangers of Jill getting sick & that preschools are crawling with germs....we thought she'd be pleased we were taking every precaution. She laughed, shook her head, and said, "You can't live in a bubble", and I insisted, "Oh yes we can. For 2 or 3 more months....if it gives Jill a better shot at survival. Oh yes, we can." It's a little (sometimes a lot) frustrating that these medical professionals scare the living poop out of you with tales of kids ending up in the ICU because they contracted a fever, and in the same breath, make you feel like you're a looney for doing everything in your power to keep that from happening. "If she comes down with something, it will likely be from bacteria in her own body". Okay....BUT if Anna brings home hand-foot-mouth disease from school and Jill succumbs to THAT, then well, maybe keeping Anna home wasn't such a bad idea. I'm pulling the "I'll do what I think is best because I'm the mom" card & if you want to joke about how worrying is my favorite past-time (I was so pissed off at that...yes, I just LOVE to worry....it's FUN for me) and that the big deals you warned me about are only big deals in my HEAD, you have a good time. Guess you can't always be delighted with your doctor. They're human too. And extremely over-worked. But I can't sit back (like I stupidly thought I could at first) and expect these doctors, nurses, social workers, or other medical staff to save my kid. Part of that...a big part...is the parents' job. We had a few really terrible experiences with nurses close to the end of this last visit....a few too many gross errors prompted me to write a letter to the Nursing Coordinator (fortunately it was well-received & attended to immediately) AFTER I requested (over the course of one day) a complete and VERY thorough training on every aspect of Jill's medical care....some of which I hadn't payed much attention to because I didn't think I had to. Unfortunately, one mistake can cost your kid her life. REALLY. So, like it or not.....well, let's just say, I want to get this over with, but am in no shape or form looking forward to going back into the world of "what is this med? why is she getting it? how many cc's in what strength solution how many times a day is it being administered? drip or push? what are the side effects? are there other drugs that may have less of those? if she experiences one of them, what drug does she get then? and what are the side effects of that? " and don't even get me started on butt cream, eyedrops, mouth sores....oh god, you name it. I'm feeling negative lately. The novelty has worn off & I just want to get out of this. Or maybe I'm just tired from too little sleep every night. It's that same reason. I lay down in the dark & think about the worst things you can imagine....and then the headache starts....and I can't sleep anyway, so why try unless I really know I can't not. Did I already say all this in another entry? If I can't remember, maybe you won't either. But I'm not writing this for you. Or am I? I read in a Parenting Magazine the other day that blogging is the new trend among parents (especially moms), and though they didn't mean this in a bad way, it is an extremely narcissistic practice. You know people are going to be reading it, so you write in a way that makes you look good. Have I been doing that? Maybe. It's no different than sending your friends pictures of you & your family in your best moments. "Aren't we the happiest family on the block? How lucky are we?" But then, how many people photograph moments they don't want to remember or don't want others to see? Just know that we all have them. Both the happy and the crappy. So whatever. If you're reading this, maybe I'm narcissistic.....but you're nosy. So there. Why am I going off on YOU? If I lose my audience, what am I but a rambling crazy lady talking to herself? In that case, why not just put all this junk into a private diary that I store safely in my dresser drawer? Because, I've NEVER kept a diary. I'm an exhibitionist! I don't care to write to myself. It's only interesting to me if it's interesting to someone else. Wow, this introspection is making me think I should get to sleep right now. I think I'm tired enough. Can't you tell? It's comforting to know I can go back tomorrow & erase all of this. But will I?

Narcissist Out.