Tuesday, June 30, 2009

Harnessing independence.

There are many things that I said I would never do before I had kids- that when I had kids I realized were not the end of the world. Matching clothes- overrated. Dirty faces-inevitable. Still won't drink out of a cup after Bella though- ick. The child is the opposite of a particle filtration system, which in my beverage is not a welcome thing. But I will not leash my child. As a younger person, I always thought-if you want to walk something on a leash- get a puppy. I have four of them. 2 of which run in opposite directions when we are in public. That's why I bother taking the older two, so they can help corral the little monkeys when they break free. People out there will not put a leash on an animal - but put a friendlier version on and call it a harness. There is a child equivalent- if you haven't seen it- you probably don't have rope burns on your legs. Here's how it works..It is a fluffy backpack, inocuously disguised as a frog, or teddy bear. And attached to the backpack, is a leash. SO your child gets an additional 3 feet of grazing space before you can yank them back into your bubble. It's like hands free parenting- leaving your hands open to juggle shop items while your child is 3 feet away also "juggling" shop items, or clotheslining some poor unfortunate soul.

Don't get me wrong- I don't think leash parents are bad parents. Strapping a child into a stroller isn't much more than a comfy restraint system with storage and a cupholder, it still seems less demeaning. Everyone has their personal choice. I more often than not choose not to go out as opposed to battling toddlers or leashing them, that's my choice.

Unfortunately for the past 6 months, Lily has spent a huge chunk of her time leashed to some sort of contraption. Every night we hook her up to her feeding tube which is about 5 feet of clear tubing attaching her belly to the pump that delivers nutrition. The plus side- she doesn't starve- the down side- she is stuck. She can't get up in the middle of the night to go potty, she can't get out of bed and wander or get a book or a drink of water. On the plus side- she can't get out of bed and wander. So she would sit in bed and scream at the top of her lungs moooooommmmmy!!! And when my heart climbed back into my chest- I would run and see what the crisis was. I learned not to show my face when she yelled for daddy- which was problematic when Phil was at work. It was Ok though, after a few tries, she switches back to moooooommmmmmy.

Now that she is done with the inpatient chemo- we have weaned her from her feedings at night. She is eating like a normal kid again and even resumed her love affair with ketchup. It has been an interesting experience. We started by gradually decreasing the quantity of her feedings at night. When she would wake up nauseous, we'd up it a little the next night. We got down to 10 mL per hour- which ends up being about 90 mL a night- which is not much- it's a few swallows and we established that nausea was no longer a problem. The problem was her attachment to the routine, the hooking up of the tube and having that with her at night. This past weekend- Phil packed up all the paraphenalia in the little back pack and some cans of formula- but she requested not being hooked up. Score. As soon as we got home, Phil dismantled the pole the feeding machine hung from and took all associated machinery out of her room. She saw what was going on and did not like it. That first night was rough. She didn't want to go to bed. But she finally did, and it was a treat to have her walk in our room the next morning and declare that the sun was awake so it was time to go downstairs.

We still use her tube for medicines 4 times a day. I have started reducing her anti nausea meds (we are down to half her usual dose)and haven't noticed a major change. We had a little field trip to radiology today to do her bone age to see how it has progressed since the last time. Other than that, I am party organizing. As for the party- it is fenced and kid friendly so feel free to leave all leashes at home.

Saturday, June 27, 2009

You take the good, you take the bad...

You take them both and there you have it. I've been finalizing arrangements for Lily's big party, so it only seems logical that things should blow up. Food- ordered, waterslide and bouncy house- taken care of. But her final day of mitotane, I just can't figure it. I counted days, weeks, calendar months. It doesn't make sense to me- 3 out of 4 ways of counting and I have her done Monday this week. Yet the "official" word is that she will not be done until July 17th. F%$! Not much we can do about it. I know I'm right, but the study doc said 8 weeks after the final chemo. Well her final chemo started the 20th and ended the 24th of April. Add 8 weeks- that puts us to June 15-19th. Ok- Maybe from the end of THAT cycle- that would be May 11- add 8- that puts us only to July 6th. Counting actual weeks of mitotane- we are done with week 32 on Monday. I know it seems stupid to be upset over 2 weeks. But that's 56 more doses of mitotane. I could be the perpetual optimist and say it couldn't hurt- she just reached therapeutic levels 2 months ago(ironic eh?- 8 flipping weeks) so the more the merrier- kill those little bad ass cancer cells and hope the craziness and neuropathy it is slowly but surely causing as the blood plasma concentration goes up is truly temporary. And people worry about giving their kids food that has red dye 40 in it. I wonder how adrenal cancer cells feel about red 40? You take the good, you take the bad.

As I am all grumpy and weepy over it, Phil looks at me rationally and says - Are you upset because she's not going to be done or upset because she's not going to be done by her party. Both, but mostly I want her to be done with this phase. It's time. Her party is to celebrate these months of bravery and strength , to celebrate her and our amazing little family and the amazing group of friends that have helped us through it. It doesn't matter as much when. Talk about a major case of senioritis.

Friends are on the island, so we took a last minute opportunity to have a little getaway. Recharge all of our batteries. My camera is worn out too, and I forgot the charger- so these memories are stored in my memory banks. This would also be the good- sitting back- enjoying the weather- the breeze- and realizing life is too short to sweat the little stuff. 3 more weeks. It'll be done before we know it.

Tuesday, June 23, 2009

A frog in her throat.

Lily's frog hopped from her belly to her throat and is now biting it. Her fever broke this morning so we avoided an admission to the spa on Tripler Mountain. They did a strep test, but we won't know the results for a day or so. I don't think it's strep because the other kiddos all got better within a couple of days, but we shall see. All in all, we hung out for 6 hours and don't really have much more information than when we went in. It's not a bad thing to not be the most pressing case of the day.

Our primary oncologist is out of the country for a few more weeks. Unfortunately there was no definitive stop set for Lily's mitotane when she left. The pharmacy says to finish the prescription- but that takes us to July 17th and that's more than 3 weeks longer than I calculated. SO of course I came home, researched, recalculated and have decided that this week is it. The study dictates 8 months of mitotane. 4 weeks in a month, 32 weeks of mitotane. We started Nov .17. Theoretically then, Monday ends week 32 of this journey. I'm sticking to it. I specifically asked the doc months ago if they would extend the mitotane if she didn't reach therapeutic levels because she was no where near therapeutic levels and she said no, she may not reach therapeutic levels- but 32 weeks was it. I'm pretty sure the pharmacy is not going off of the clinical trial protocol, which I reread- but were going off of the mitotane they ordered.

All of our usual friends came by to see Lily. Miss Julie and Ms. Barb spent lots of time reading to and distracting her. The access went well, despite her having to get 2 pokes. The first one wouldn't return blood so it had to be redone. I am pretty convinced that she feels the poke- but it's not a horrific pain- it's mostly scary for her- and rightly so. She still screamed like a maniac, but all in all there was no kicking or thrashing. She ended up getting a course of IV antibiotics, just in case and we got to go hang out in the pharmacy for amoxicillan- just in case.

We rounded out the visit with our endocrinologist who will be seeing us back in a couple of weeks. We will redo a bone age for Lily and they ran a panel of hormone tests to see if we need to put her on hormone therapy to stop whatever changes are starting.

It was a long day, I definitely do not miss doing this 3 times a week- sheesh. I do miss our friends we have made there and it was so nice that they all go out of their way to spend extra time with us while we were there.

Monday, June 22, 2009

Snippets of time


Lily has the virus Bella had last week. I am watching her closely as her fever is hovering around the point she gets a trip to the spa. Since I am not allowed to meander further than the kitchen to replenish juice rations, I have been piddling around on the computer all day. I wish I could say I accomplished anything but for now she just needs mommy. Not all job products are visible- but no less important. In between , I do computer chargings and loads of laundry when she drifts off to sleep.


There was puking involved last night. Phil spent the 1st part of the evening on duty and I took the second... I thought her fever broke last night. It did not. Going into clinic today to flush her port and do routine bloodwork. Hopefully we will not have to stay....poor monkey.

Friday, June 19, 2009

It's 2 am.

I do not like 2 am. Or 2:30am or 2:45 am. I am pretty sure I will feel the same about the rest of the ams for the rest of the day. I knew Bella's late nap would bite me in the bootay.

She crashed on the couch shortly after 7. I worked dilligently towards getting the other children in bed, knowing that early to bed, early to rise. Lily, also having indulged in a late afternoon nap- was not feeling sleepy in the slightest. So I let her pick out a tv show and I start running a bath- for me. We have a discussion on how I would like to take a bath by myself, I don't want to hang out and chat or have a little fish hop in with me- it was mommy's quiet time. Ok mommy. Please just watch tv. Ok mommy.

3 seconds later...whatcha doing, you taken a bath? Yes, remember we talked about mom needing a few minutes of alone time. Oh, Ok mommy. You have fire? Yes, I lit some candles. Is that the smell? Yes, they smell. You are drinking in the bath? Yes, I do believe a glass of wine is indicated. Hmmm. Ok, bye mommy. 1 minute later.. in walks Lily with the mini Barbie piano blasting one of the prerecorded songs. You need some music. She moves to set it down out of reach- no thank you Lily- I like the quiet. She admonishes this declaration with a look of disgust. She quickly pushes the button to switch the song and declares she will turn the volume down. She then proceeds to park herself on the bathmat next to the tub and serenades me, off key with a rousing rendition of jingle bells... Which causes me to laugh to the point where tears are rolling down my cheeks and this somehow pleases her as she packs up her instrument and leaves- another job well done. And somehow that ranks as the best bath I have had in ages, go figure.

I get Lily squared away in bed and feel Bella, she's still warm- I think my night will be short so I rush off to get a few winks. By 130am, I hear Bella yelling for daddy. I wonder what that's about- there must be a monster involved- he's the resident monster checker these days. She is sitting on the edge of the bed and declares "I'm scared" as I feel her forehead. She's burning up- time for some more tylenol. I lay with her for awhile, she declares strange things- Like the fireworks scare her. I realize that she is awake and staring at me and in hopes of her not waking Lily with her chattering, we move downstairs. I pour her some juice and she requests macaroni and cheese. I am not making mac n cheese at 2 am. We can go to the store! Um no, short of sleeping, we are not going anywhere. Oh. Ok. The blinks are getting longer- I am hoping we will be off to bed soon. I can hope.

Thursday, June 18, 2009

No News...

Is good news. I am pleased to report, there is not much to report. It's kinda like the aftermath of a hurricane, really. There's tons of clean up which keeps me busy. On the positive side- the girls wear more clothes now- the down side is I do A LOT of laundry. Our 1999 washer and dryer keep plugging along- and I am doing everything possible to drive those bad boys into the ground. I'm not looking forward to shelling out the deniro for a new pair, BUT word on the street is that I could reduce my number of loads by at least half. Time is money.

I am surprisingly not stressed about Lily's party. Very uncharacteristic, yet true. My biggest worry is that after about an hour and a half, Lily will have a meltdown and that will be that. She likes to be the center of attention, but not directly. Fortunately I have had a few girlfriends offer help and I know that by the end of next week when I start to panic, there will be reinforcements.

Bella has the bug that Kiera and Phillip had last week. A fever and general malaise. Always wanted to use that word. All I hear all day is- MOM. I don't feel good. Mom, I don't feel good. Mom, I don't feel good. Hey Bell? Yeah? DO you feel good? No, I don't feel good. I get that. It did buy me a 30 minute nap this afternoon(it was her second). Lily crashed on the couch and I heard wimpering upstairs- she had gone up to get something and never returned. I found her huddled under her monkey blanket-Mom, I don't feel good- so we curled up and caught a nap until the quiet woke Lily and she sought us out.

I wonder how the laundry got done when Lily was sicker. I think Phil must have done most of it because I have done laundry for 3 days running and it keeps regenerating exponentially. You'd think I was doing laundry for 6 or something.

Thursday, June 11, 2009

We're still swimmin....

I have been able to catch up with friends a bit these past few weeks. Cleaning always goes faster when chatting with a good friend. I guess it's the biggest downside to the blog, everybody knows the ins and outs of our days, but I have fallen hopelessly behind on what's going on with all of you! I truly appreciate the consideration of our circumstances, and I know the past few months we have been completely absorbed. I am looking forward to continuing to catch up with everyone.

This week was filled with summer fun and family. We went to the pool, the beach, visited with Aaron and Grandma Sandy who is finally back from Iraq. To round it out, Phillip caught the bug that's going around and is still out of commission on the couch, so I have been catching up on laundry and all those towels that need to be washed!

Tuesday, June 9, 2009

Special Lily K?

We all know Lily is special- but is she special in a way that gets her into state funded preschool? No. She MAY qualify for special ed services once we enroll her for Kindergarten, but right now her learning is not impaired enough to get her in the special pre K program. I have mixed feelings about this. I'm glad she's not developmentally challenged to the naked eye and she adequately answered perplexing questions such as- How old are you? and Do you want to color? and then she spent the rest of our "interview" chanting- I want to go home. I want to go home. I want to go home. At one point she got up and was counting the blinds on the door while chanting- I want to go home.

Apparently you have to have 2 "disabilities" to qualify OR one disability that interferes with learning. Apparently a 4 year old with hearing of only half the sounds in the english language doesn't qualify especially in a place where ESL is standard in the average home. I also got the " well how long are you going to be here for?" implying that my husband's military status and our position here is temporary. I explained that he is Air National Guard- meaning this is our home. Regardless- how is this part of the equation? Standard.

Please bring her in Mrs. Mallory if she has more profound hearing loss that interferes with her learning or if her speech development suffers. Yes, let's not cut this off at the pass, let's wait till we're in full downward spiral. So now I guess I go to the social worker at the hospital and see what services are available in the wake of all this. We'll see if that does anything for us. I guess it could be worse. I guess we go back to normal.

So I sign her up for Maggie's dance class as part of this reintegrating into society thing. She did pretty well- it was Bella that was a roving maniac. 15 minutes into class and 3 trips to the bathroom later- Bella continued to race back and forth across the dance floor. I have flashbacks of our 1st attempts at dance class with Kiera. Not good. Every now and then she stops and appears to be doing what everyone else is doing, but then the fancy passes and she is off fluttering around. About 30 minutes into it I hear Lily pleading with the instructor that she wants her daddy, she misses him sooooo much, he has to work. The instructor says with no sympathy, how sad- now find your spot. I think it's rather funny. Lily shrugs and finds a spot- who's to say whose spot it is- but at this rate it's a spot. She spent most of the time admiring herself in the mirrors and they get to the end of class where they tell a story through dance- today's story, Little Red Riding Hood. Maggie, being the only child in the class who has actually listened to any of the instructions- lands the role of prima ballerina. A little boy lands the role of wolf and the rest of the chorus are relegated to trees and flowers. Lily decides she is going to be a flowering tree and plants herself next to the wall. Bella on the other hand is scattering flowers and continues to run around like a maniac- which actually is part of her role in this play. Apparently flowers run around in the ballet. I am exhausted from the emotional torture of vacillating between silently willing them to behave in public and commanding them to behave in public. Neither seemed to make a whole lot of difference. Fortunately this is a small studio with a very relaxed staff and all reassured me that in a few weeks they'd get the hang of it. I hope so.

Friday, June 5, 2009

A Blossoming Lily.

I love Lily's new hair. It is so soft- I sit around and pet her. Fortunately she doesn't mind and I usually get a hug out of it. It's still sticking straight up and blonde. She also has been wearing her hearing aids nonstop for the past few days. It has been great. She seems a lot less frustrated. Last night she pulled one out before bath time and it came apart. I almost lost my mind. Not even a week. YHGTBSM. Ugh this means a call and a trip to Tripler, and we just spent the afternoon there. I look at it- I don't think I can fix it. I call Phil- of course I imagine him in the bar, couple of beers under his belt so he is calm and rational and he tries to calm me down- she's 4- there's gonna be a learning curve says the rested parent. Lily takes her bath and is sitting there watching tv and losing her mind- she wants to hear it- she can't just wear one- she wants both- so I shove the 2 pieces back together and miraculously they stick and it seems to be working. Add Hearing aid mechanic to my list of possible occupations when I recover. She starts complaining of the waterfall sound. I am starting to stress this means the aid is still broken and she's hearing feeback- she keeps turning her head from side to side- finally she points at the oscillating fan- THAT'S IT! That's the waterfall sound! I turn it off and that makes it all better. Phfew!

After Lily's last appointment her bipple, as it is called around here- was very irritated. She is sensitive to the adhesive and there is usually irritation- so I make a mental note and file it away. This past weekend I notice the redness has gone, but she seems to be swollen- It may just be her port which is less than an inch away(and has often been referred to as her 3rd bipple)- 2nd mental note, filed away. Then on Tuesday she had a dress on- I could see her lil nubbin poking out- oh mother b*&#!. She is just starting to wear clothes again. That's the 3rd notice- this needs to be investigated. Ugh. I ask her if her port bothers her- nope. Can I touch it? Are you gonna give me a shot? No. Sure then, you can touch it. So I feel around- the port seems intact- it doesn't feel like a hard cyst, it feels like a little lump. Under her bipple. There was much surprise early on that she had not started to develop- but I wouldn't expect one nubbin to come in- I would expect symmetry. Supposedly we also have killed off the adrenal glands and hence their ability to produce these hormones. I have that pit in my stomach. Why couldn't I have noticed it when Phil was home last week- or in a few days when he gets home. I'll sit it out and see what he thinks when he gets home. I'm not gonna tell him, he will come home- as much as I want him home- I need for him to have a job. I spend days randomly bursting into tears and battling anxiety attacks- when we are out and about- it's all I can do to not burst into tears when someone asks me how she is doing. I don't want to be the hypochondriac parent that medical professionals don't take seriously, but I also don't want to sit on something that needs to be fixed. I finally decide having it looked at by her doc is better than waiting. I call and Florence immediately recommends bringing her in. We almost made it 2 weeks.

Dr. K is absorbed with another patient, so we are stuck with a resident until she gets there. I could be hanging around waiting- instead I get to recount her medical history with a resident who I think probably has a personality in there somewhere if he would just loosen up. And then it occurs to me- this is the resident that Phil had words with about waking us up at 4am. Now it's just amusing to watch him squirm. I hope he doesn't choose peds as his specialty- but maybe he can be trained. The upside was that when Dr. K finally got there- he was instructed to show Lily how to play xbox so we could talk- the guy has now been adequately punished. Of course my heart only skipped like 8 beats and I must have gotten pale because she immediately says- I think it's just breast tissue. Oh just breast tissue. That's all. In a 4 year old. No biggie. UM- does anyone else have a problem with this? If she's starting to get nubbies- then other things could happen- and although it would TOTALLY explain the moodswings- I am not equipped for my own monthly battles- how on earth could a 4 year old be expected to- yeah- um no- what are we going to do about this?

Of course the endocrinologist is out for the week- because she would be our next stop. So a call is made to radiology to see if an ultrasound would help rule out tumor tissue- and of course the answer is no. Breast tissue is too fibrous- that's why U/S is not readily used for monitoring the breasts-probably not much more success with MRI and something that size- a surgical consult is best. Dr. K calls Dr. E directly and she says send her on up- one question though- Is she wearing clothes today? Oddly enough Dr. K tells her- she is. Off we go.

AS I walk up to the surgery clinic desk- I realize that we don't have an appt. This is totally going to be a problem. Receptionists do not respond well to-"just call the doc" so I try to convey what
I want. I get the "smile" and " well, it could take some time for the consult to come through and then I have to make an appointment- remind me in 15 minutes to check" Oh good lord...we have a seat as instructed and I am trying to find a signal to call Dr. K when I hear Dr. E asking if Lily is here yet. God I love that woman. The receptionist says she is waiting for the consult to make the appointment then she'll send her back- Dr. E laughs and says"there won't be a consult coming, we don't really need to make an appointment, do we? I'll just take her back real quick- it's just a visit." Sigh- snip snip computer tape.

Lily is pushing the umrella stroller with pooh in it and runs at full speed down the hall. She apparently owns this clinic as well because everyone stops to say hi or give her five. I repeatedly remind her to walk as she cruises by the exam room. Lily has figured out why we are there and has her shirt up over her head before she even settles on the exam table. She is giggling hysterically because this will be the 3rd time today she's been felt up and she seems to enjoy it- ugh- mental note- have talk with Lily about who is allowed to touch her. Dr. E immediately smiles- I am pretty positive it is breast tissue. There are no hard spots- it's centrally located- I would highly recommend against biopsying it- in fact I would not biopsy it at this point. The reason is that when breast tissue comes in- all the tissue you ever are gonna get- is in that "bud" if you biopsy it- you will end up with a severely deformed breast later. I think we should limit deformity at this stage of the game. I do not like that my 4 year old is getting nubbins, but radical mastectomy at this point isn't called for either. She reminds me that my 4 year old's body thinks it is 7 and with all the exposure to hormones from the tumor- this is not entirely unexpected. How to proceed is back in the endocrinologist's court. I suspect we will be adding a repertoire of medications to our regime to postpone these changes for awhile. Mostly though I am still relieved that it's not a tooma. Even if it means our Little Lily is starting to bud. Ick. I can hear it now- Kiera when she notices(and she WILL notice) MOOOOOM!!! Why does Lily get boobs before me? ...Well dear, she's an overachiever- do better in school and you might get some too. hee hee hee.

Tuesday, June 2, 2009

Grumpy Old Women

So maybe getting old and grumpy is not the way to go. Maybe this LFS thing saves us from wandering around decrepidly until we have worn out our welcome here on the planet. The more I run across people who are miserable and make those around them miserable- I wonder....why? We all have bad days. We all have to deal with people we would like to slap up side the head and tell them to get a clue. There are productive ways to effect change in society and then there is manhandling a 4 year old who has no relation or connection to you.

Last week, my friend Tracey mentioned going to the aquarium. We haven't been since Lily was an infant, it is a small building with only a couple rooms. A great mini outing to test out the new hearing aids and gradually work the monkeys into model citizenship. I am halfway to pick up Tracey and Maggie when I realize I forgot my camera and Lily's hearing aid remote control. I grab our carpoolers- we go back to get the forgotten items. We are halfway out of the neighborhood when I can't remember if I shut the garage door or not...so we head back. My whole sense of routine has been shattered. Mama needs to get her groove back.

We endure Lily and Bella screeching and touching each other since they are in much closer proximity in Phil's car- until Lily realizes her hearing aids are itchy and then we listen to that complaint. I'm pretty sure Tracey will opt for 2 car ops next time- if I even get a next time...

We make it to the aquarium, get the children watered and pottied and wrangle them away from the gift shop where they have brilliantly placed tons of aquatic squeaky toys directly in your path. We sit through a 5 minute video about saving coral and not putting trash in the ocean- nothing holds 3 and 4 year olds attention like public service announcements- fortunately there were brightly colored fish involved. As we are finally rounding the corner to the first tank- the kids rush right up to the window. There are little carpeted ledges that tempt children to climb up- and no signs admonishing such. 2 kids are already perched up there and Lily squeezes past 2 adults to climb up. She literally has one leg up and this little old woman starts pecking at Lily's shoulder and wrenching her down all the while yelling at her. I was about to correct Lily's behavior- so I am taken aback and about to pounce on the old bitty who has her hands on my child when I hear "How rude is that?" Before I know it the little old woman whirls around and she and Tracey are facing off. I start counting to 5. Talk about the mommy instinct- I was glad Tracey stepped in- I may have had to throw down an old lady with 2 different school field trips looking on. In this corner we have Granny Grump Alot- 5'2", yielding a mean metal cane- In that corner we have Protective Mama, 5'4, wielding pride and indignancy. Oh wait- Tapout Tracey is in the ring...It's gonna be a tough match. I grab the kids and move away- I'm holding on too tight-I've lost the edge- but I think Tracey has this one in the bag and although Lily is not fazed, Bella and Maggie look like they are gonna cry. I really want to go over there and give her a piece of my mind- but Tracey seems to have found her flow- she's laying out the "You NEVER touch someone's child, who do you think you are? She is a CHILD!" The old lady counters with "I don't want her to trip over my cane..." Tracey shoots back " Are you threatening a CHILD?" Wow- what alternate reality exists in the aquarium? I Knew there would be Lily-centric drama on the trip- I had NO idea it would go down like this. The old lady turns away- the TKO goes to Tough mama Tracey.

6 months ago I probably would have reamed that woman up, down, sideways and backwards. I would have thought it made a difference. As the scene settled down, I saw a variety of parents looking on with abject horror- their gaze following Lily. In a month- she will start look like any other 4 year old with a bad haircut- but she still looks like a cancer patient. Later on in the day- a man actually asked me if she was the cancer patient on all the commercials-( they all look the same you know. Pale, bald, sickly.) The fact that someone would touch my child and reprimand her after all she has been through infuriated me. To the point that if I starting giving her a piece of my mind- I may not have been able to stop. All the injustices I have felt and put down , would come crashing down around this insensitive rude old woman who lost her situational awareness. I don't know what her situation is, or why she is so miserable. I felt horribly sorry for her that she felt she had to pick on a 4 year old to exert her authority. How little control must she have over her life- that she chooses a sick child to reprimand- not the 2 perfectly healthy ones perched on the ledge that had been there well before Lily. Or hell- just be an adult and move away until the annoying lil buggers pass. I believe it takes a village to raise a child. I am all for my children being publicly corrected if they are doing something that affects others negatively. I draw the line at grabbing my child when they aren't in danger or posing a threat to someone else. Maybe it's exhaustion, maybe it's maturity, I'd like to believe it's the latter- but I almost felt like this woman wasn't worth my time- and I was damned sure not going to let her ruin my day. You can tell people like that they are wrong, but they won't hear you. Whatever in them allowed for them to manhandle a child, would prevent them from seeing they were wrong. So where is the justice? In the fact that we did not let it ruin the day- and it could have. In the fact that I have a friend who would throw down for my child as if she were her own. It is a reminder that you will be treated how you treat people. You will reap what you sow.

My hope beyond all hopes is that in a few months- notwithstanding a few wicked battle scars- Lily will look, act like, and be a normal 4 year old. The average person will assume she is just spoiled, and not spoiled because she is going through something terrible, possibly terminal. She will wander around places like she owns them, because that is her personality and not because it's the first time in a long time she's be out in public. On the plus side- we had no major meltdowns- and Lily seemed much less emotional today. She logged over 3 hours of hearing aid time. She also got to witness her first WWE event and seemed entirely unimpressed.

Monday, June 1, 2009

I Don't Like Mondays

I never used to have anything against Mondays. Monday wasn't that different than any other day of the week. Mondays used to be my cleaning days. I tried to do that today. After the kids wouldn't wake up and I had to chase them out the door. After the van wouldn't start and thank god Phil got a ride to the airport when he left- so I just had to reload the children into his car. After I got home and established that probably among other things, my battery has finally gone on to battery heaven. After 3 hours of refilling juice cups, providing snacks, wiping bums- I almost had the kitchen to the point I would refer to as clean. And I really enjoyed it for the 5 whole minutes it stayed that way. I was in the midst of contemplating why I couldn't keep up with it as Bella decided to rocket her lucky charms and juice cup across the floor. And still today was easier than any given day in treatment. I'm just tired. The children have post midnight bed vacancy sensors. When dad is gone- they feel compelled to keep me company. The first night it was Phillip after Bella. Then Bella and Kiera. Last night was Bella, who eventually told me that Lily's' port was beepin 'and when I turned it off, she went right back to bed. The machines seem to go in cycles and last night was one of those nights it just felt like beeping. By the time it got it out of it's system, Lily was awake and wanted to snuggle and channel surf- which fortunately she agreed to do in my bed. That at least bought me until daylight. Right around the time the other kids should have been getting up, she was ready to go back to bed-which could not be allowed and made for a grumpy Lily. Still better than having to wake a Lily.

By the time I got the kitchen clean, it was time to go get the kids from school. On our way out the door I spotted what looked like a double headed lizard. I leaned closer and the noggins froze- I clearly had interrupted an intimate moment. Lily jumps over to see what I am looking at. "Look mama- they're all tangled!" I instruct her not to move so I can grab the camera. Of course by the time I get back, she had scared them off. Where'd they go? "they went under there- they're still all tangled!" I guess we'll have more lizards soon. At least somebody was having a good Monday.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)