Good Nights

Phil and Lily got home last night, shortly after dinner. She met everyone with great big smiles and hugs. Right now she and Bella are enjoying a little cooperative play after beating the daylights out of each other for the past hour. Bella wanted to play with the Barbie dollhouse and Lily disagreed that this was a viable option under their current cohabitative situation. She then proceeded to whack Bella over the head with Barbie and Ken and continued to do so as Bella retreated down the stairs. At this point, I intervened before Bella got the chance to yank a tube out and we all get to check back into the pink palace.



Last night was the standard adjustment. Any time we come home, the elation of being back in a familiar place is followed by the crash of emotion- usually at bedtime. Our bedtime. She usually goes to bed fine and then wakes with a nightmare that leads to hours of battle. We have come to expect it. We try to get released earlier in the day, but no matter our efforts, it happens. Last night she kept swiping in the air yelling at an invisible nurse to leave her alone. Her standard routine as vitals are taken in the hospital every 4 hours. Phil and I have determined when vitals are required and have recently learned that we can refuse vitals. Usually the refusal takes the form of Lily screaming and kicking at the aide, but now when she isn't on chemo or narcotics, we can refuse the 11 and 4 o'clock vitals. Rock on. Can't they just write that in the chart - it's already in there that if you wake her you will be plagued by the she-devil for hours- can't we alleviate the whole waking the she-devil if not absolutely necessary?



So back to last night....she is kicking and screaming at me. I am banished. I leave. The problem is that 2 days ago we were getting low on Pull ups( actually good night brand with the pink ballerina- don't hold as much as nighttime pull ups- but she refuses to wear anything else.) I run to walmart and grab the last 2 packs and deliver them and other necessities to the hospital. I get home and am unpacking and notice that the design has changed to purple butterflies. Crap. I text Phil a warning. This is gonna be bad. He says it will be fine. I know it will not-be-fine. He had enough ballerina pullups to get them home. So we try introducing the butterflies- they're purple, your favorite color. Not so much. She hates purple butterflies apparently. Who knew. We finally get her to accept the situation, only after she drips poo all over the newly disinfected bathroom. I get the mess cleaned up, while Phil hooks her up for bed. As we are closing up downstairs, she is crying and yelling. I get upstairs to find that she has stripped off the butterfly pullup and is on a rampage about how she is going to wear underwear from here on. Great, what's next CLOTHES? PAJAMAS? How about we wear underpants tomorrow, after we sleep? No. But you have to get up to go potty and you have the pole and you don't always wake up and the mess......Allright wear underwear but you have to put the potty pad( incontinence pad) inside. Ok. We get it situated, hugs, kisses, goodnight and as I turn my back- I hear her ripping the pad out of her drawers and fling it onto the wall. Outstanding. Back to square one, I take a deep breathe and decide to go tag Phil for swap out. He comes in as she is trying to get out of bed. I suggest we unhook her, he says to let her tire herself out and proceeds to hold her while she kicks and screams and I'm pretty sure we are uninvited to her birthday party- at which I'm guessing she will NOT be wearing purple butterfly pull ups. What seems like an eternity later, she conceeds to wearing a pull up, but mommy has to do it. Phil quietly steps away and I get the pull up on. She is laying there, I kiss her goodnight and sigh. I am not even to our bedroom when I hear the squeak of the pole and her little voice and I'm pretty sure she's swearing at me. Oh S*%$! She's on the move...I race to to her room and as I reach her- the pole is mid air falling backward. Oh mother bleep of all bleeps I think, I may have actually said it, or something along those lines- but I can't be sure. I honestly don't know how she may have heard those words that came out of her mouth. I don't generally swear, when I do the entire family cowers and knows we've reached the invisible precipice and that everyone should carefully, very carefully, tiptoe away from the mommy. I watch, unable to stop it and for one moment realize that there is nothing I can do, her button is going to be torn from her body and I'm gonna have to see it. At the last second the IV pole hits the foot of the bed and stabilizes, preventing the bloody disaster that it could have been. Lily is screamin : "My button, I'm sorry mommy", so I know that after a brief visual exam- everything is OK. She slithers back to bed and declares that she has to go potty. I unhook bag and machine from the pole and become the human IV pole as Lily sits on the floor of the bathroom lamenting over how much she does not love me anymore. And apparently she hates butterfly pullups too. She yawns, she wants to go to bed. I am bracing for starting this all over again. She lets me put the pullup on and I lay next to her. She reaches up and touches my face as she runs her nee-nee through her fingers. I am grateful she doesn't feel the tears running away. Her breathing evens out, I sneak away to Phil, who just holds me as the hopelessness of the situation washes over us. And we worry together. We worry that this is not working. We worry that this treatment is not doing what it's supposed to and merely prolonging the unimaginable. We cringe that we let ourselves feel this way, but have to feel it nonetheless. We want her to make it. We want this to be a bad memory, but as we look back at pictures and see the spark that used to be there dimming, I know that the chemo is doing what it is supposed to. It's darkest before the light. I know it is still getting darker. And when there is a little twinkle in her eye, I know that the dawn may be far off, but it will come. It has to.