Date: Wed, 05 Jun 2002 20:10:23 -0400 From: Rory M Subject: A Family chapter 4 A Family By Rory M. Chapter 4 From the perspective of Noah Elliot I woke up not really knowing where I was for a moment, but then the dinging monitors, crappy cot, and soft glow from the hallway brought me back to reality. I heard the whimper again and realized why I had woken up in the first place. I swung my legs over the side of the cot and stood up, leaving me right by the hospital bed that my life revolved around. I reached out and patted Avery's chest while I fumbled for the light switch on the wall above the bed. The whole time he sniffled and squirmed, what was wrong this time? "Da...ddddy." "Shhhh, baby I'm turning on the light...there we go," I looked him over, but I couldn't see anything that was vitally wrong. I was grateful, but it was 2 in the morning, I felt like my head was bobbing back and forth trying to sleep again. "I didn't...mean to. Da...dddy...I coun't help it." "What? What happened baby? It's ok," and then I caught I whiff. I immediately hit the button for the nurse and lifted the blankets off of him, trying to salvage some of the bedding, "Shhhh, it's alright angel, it's not your fault." I lifted him off the bed and onto his feet, letting him hug me as I tried to take off his little pajama pants. He was shaky, and sniffling into my ear. The nurse better get here soon, because these sheets have to be changed. "Daddy, I still have to go..." I grabbed the bright blue mini-bed pan from the shelf under the bed and sat him on it, letting him lean his back against my stomach as I tried to remove his once Mickey Mouse underwear and threw them in the spot on the mattress just three feet up the bed. The nurse walked in finally but turned right back around, I was hoping to get the usual supplies she would need in such a...circumstance. After all, this must have been old hat for her. Avery started to cry, and then do what he had started on the mattress. I know that feeling isn't pleasant, especially when you're tired, miserable, and embarrassed. "Shhhh, Avey Baby, it's ok. You couldn't help it, the medicine does that to you. Shh, oh come on, it's not so bad. It happens to everyone when they get sick, even Liam." "Even," sob, sniffle, "Yoou?" "Yes.... even me. And Mommy especially," just then the nurse came back in the room with a cart with sheets, baby wipes it looked, and some red juice. It was the party cart. As soon as Avery made eye contact with her he started to cry again, and turned his face almost around to hide in my stomach. So bashful compared to the kid who less than two years ago ran stark naked through my living room because he found out how to undo a button. "Avery, did you have an accident?" she said playfully, while she took his hands one by one and cleaned them off with a wipe, "It's ok, we'll just clean you up and forget it ever happened, ok?" he still didn't look at her, he just looked down at his now bare knees and batted his flooded eyelashes. "You done, Ave?" I squeezed his shoulders gently and looked down trying to see his face. He nodded his head and I picked him up and cleaned him up quickly so that the nurse could clean up the mess. I sat him on a towel in the chair next to the bed, and pulled the hospital smock down around him so that he was a little more covered than a moment before. Just as I thought he was calm, he started to hiccup again as soon as I turned to get him a new pair of pajama bottoms, "What babe, what's wrong now?" just then I looked over at the nurse as she handed me one of those pull-up diapers they sell for bigger kids. Oh come on, I wasn't going to have this battle now, not again. "I'm...a big boy!!!!" "It's not a diaper, Avery, and you can take it off in the morning. It's just so that this doesn't happen again," the damn nurse wasn't helping anymore. "Da.... ddddy!!!" his eyes squinted up and he began to sob again. No way in hell was he going to let me put this on him without a fight. A diaper was for babies, and he was in that stage where he wasn't going to be anything remotely like a baby, even though he was the youngest (albeit by 4 minutes), the smallest, and the last one to get the hang of using a toilet. "Avery, I know you're a big boy, but sometimes big boys have to wear good-nights when they are sick," I dared not say the word diaper, "Come on, Grandpa Arrison has to wear them, and he's a really big boy," Liam had a strained relationship with his parents, so it was ok to use them as the butt of jokes. Especially in such an emergency, the white trash card was a good one to use. "Really?" "Yeah. So it's not just for babies. Plus, it's only for a while, and it will be our secret, ok? No one has to know about it except for me, the nurse, mommy, Liam, and you, got it?" "Don't tell Aiden..." "I won't, cross my heart," I kissed him on the forehead and then slipped on the fake underwear, and then pants. The bed was made (the nurse was fast) and the smell was gone, replaced by the smell of baby wipes and disinfectant, but whatever, he wasn't concerned with it and I wasn't going to be. I laid him back down in the bed and rearranged IV tubes and monitor wires so that he was comfortable and nothing pulled. His little eyes were puffy and irritated from crying and from chemo, and his hands shook as he went to clutch the teddy bear Liam had given him. To get him to sleep would have been so easy before this past week. Maren long ago had found the secret to calming him down. Rub up and down his back and play with the hair behind his ears. But it was impossible for him to lie on his belly and I was afraid to remove even more hair from his rapidly balding head. It wasn't that easy just to tuck him in and turn off the lights, though. What had stayed, as a routine since he's been in the hospital is his fear of sleep. He won't shut his eyes unless one of us is with him. Knowing I wouldn't get my own sleep unless I found a way to get him to do the same, I started to rub his stomach above the sheets as I turned the light off on the wall. I could see him in the dim light from the hallway place his thumb in his mouth, and I could feel his breathing even out as I rotated my hand over his stomach. I don't know what was more comforting to him, the touch on his always-upset stomach or just knowing that someone was there, but it took its effect on him. Within five minutes he was back to sleep. And within 30 seconds of me hitting the cot I was also. ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~ "Morning Bright Eyes!" I was straightening the last knot in my tie as the nurse came in for Avery's daily blood work. Not even breakfast yet and I'm about to get an ear full. Avery looked over at me and then to the nurse. Usually I'd see the water works and then the pleading for me to make her go away. The finger prick was the beginning of a long day of agony that for some reason I was developing a routine to, I guess it was natural, but I didn't want it to happen. I held out my hands to pick him up which was customary. I'd hold him on the edge of the bed while she took the blood...him fighting it the whole way. What astonished me was that with a sniffle and a shaky hand he willingly held his hand out to her. I looked at the nurse who seemed as shocked as I was. "What a brave little boy. You know, I think you'll get a treat for being so good for nurse Peters," he got a treat every day, but that didn't matter. I sat on the opposite side of him and held his other hand as she swabbed the tip of his ring finger and then placed the small plastic needle to the tip. I heard the spring fire and then came the tears...not the best way to start a morning, but he's getting better with it. After his florescent band-aide and morning medicating the nurse was off to the room next door, where a slightly older little boy was going to get the same treatment. This is such a horrible existence...I couldn't imagine myself going through this every day, let alone a child. You wake up to blood work and medication, and the rest of your day is on a similar schedule of waiting for doctors to make rounds and more medications and tests. Nurse Peters comes in usually around 10 am, forcing what is left over of a disgusting breakfast down his throat before giving him chemo. He won't eat lunch today, I know that much. The chemo was horrible, every 2 days was a nightmare, and just as it seemed he was pinking up and returning to the 5-year-old I knew, it would start over again. Apparently this was going to be for the next 2 1/2 years, and I have barely handled it for less than a week. As I pondered the day that Avery would endure again, breakfast was delivered...by Liam. "HEY, Avey Baby. How yah feelin' this morning, kiddo?" he handed me a paper bag with what I knew was a bagel with chives and an orange juice, a usual breakfast of mine since college. He didn't make contact with me at first, but instead leaned over the bed and gave Avery a hug, "I brought you something if you want it." "What is it?" Avery perked up on his mound of pillows to see what Liam had brought him. I hoped, that if it were food, that Liam would be sensible enough to get him something bland. Anything more flavorful that a saltine upset his stomach, and the hospital food wasn't helping. "I brought you your favorite, but you've gotta eat it now before the nurses bring in your breakfast. Wouldn't want to upset them by not eating their food, right?" Liam matched Avery's bright smile as he pulled a baggy of diced apple out, along with a small dipping cup with caramel in it. For breakfast at any other moment I would have cringed at giving him the caramel, but he seemed to want to eat it. And if he eats it and keeps it down, I don't care what he's eating. Avery started to slowly eat the small pieces of apple and turned his attention to the same episode of Sesame Street that had been looping for the past three days. Big Bird is brave when he gets a blood gas....and then I knew it would be followed by Madeline gets her appendix removed, and then on and on. I guess they're used to put the kids more at ease with being here. Showing them that everyone gets sick, even big bird, must be comforting. If I have to watch it one more time I'm going to be sick myself, though. Usually there was an endless marathon of Disney movies on, but probably not until I get out of here. "Morning," Liam caught me with a kiss as I was still fixed on the monitor of Big Bird thinking happy thoughts. "MMM...you, too," I caught him but his hips and rapped my arms around them, laying my head on his shoulder, "How were the kids last night?" "Good. Aiden wants to know if you're going to his soccer game today, I told him I didn't think so, but I'm gonna have Tina take him," Tina Cameron was a neighbor of ours with children around the same age as ours. Her middle son and Aiden played on the soccer team together and were good friends; so Liam and myself have built a relationship with Tina on a common ground...play dates and carpools. Maren was never the soccer mom, PTA member type, so she rarely attended the games unless her schedule permitted, and never practices. "He wasn't upset, was he?" "No, I think he understands that you need to be here," he kissed me as we separated and I turned my attention to my bagel, "When is the meeting with the oncologist?" "At 5, but Maren should be here to relieve you at 3." "I've gotta be at work at 1. So I won't be blessed with her presence today." "At 1? Who's gonna be here for him? He's not ready to be left alone," I kept my voice low so as not to distract Avery from his apples and the TV. He was oblivious. "Your mother will be here, she's at the house now," right. I forgot my parents were coming in this morning, it completely slipped my mind. It's Friday already? Hmmm...I guess so. "Oh, right. Sorry, I just forgot I guess." "You're tired, why don't you stay home and sleep tonight? Maren hasn't stayed since the first night, and it's Friday. She can handle taking the weekends...don't you think?" his last sentence was marked with a smirk of condescension. "If she'll take it, but I've gotta run to work," I gulped down the last of my orange juice and put on my jacket. I kissed the top of Avery's head, him still mesmerized by the television and slowly chewing an apple. I gave Liam one last kiss as I made my way out the door, onto work. My job isn't the most glamorous career one could have, but it's better than it looks. Yes, my office overlooks a water filtration plant, but I wasn't expecting a garden with Greek statues. IT was my job to make sure that the City was supplied with water in the most efficient route, and if I problem were to occur, I could divert the flow of water through a different route. I did other things, but these were the gist of the situation. The others in my department only answered to the head of the plant, who in turn answered to Mayor Street. The kids call me a water engineer, which to simplicity is somewhat true I suppose. Today I had a meeting at 9:30 to discuss...I don't know, but it probably wouldn't interest you. Let's just put it this way...the water you drink ultimately depends on the scientists and engineers at this meeting, so hate me or respect me for the condition of your tap water, but don't forget me during your morning shower. The meeting went on with a somber status report and a small analysis on conservation procedures. My co-workers had been walking on eggshells all week, but have been supportive the days I've come into the office. This morning as I arrived a large basket of toys, stuffed animals, and a few cards was sitting on my desk. The kids had been coming to the annual barbeque and Christmas parties since they were infants. Everyone in the office knew Avery; my assistant had even babysat for me before the divorce. The day went on. I couldn't really concentrate. Sleep was a memory and I hadn't seen my parents yet, though they had been at my house since early this morning. When I called them and let them know what had happened, the first thing out of my mother's mouth was when they could make it down from New York. My Parent's have always been very involved in my family, no matter what direction it has gone, though not always supportive sometimes. They weren't exactly thrilled when I married Maren so soon after college. They were even less happy when we divorced, and when Liam showed up...being Irish and Catholic and well...male, wasn't easy for them to get used to. My mother is a Russian Jew from Long Island. I love her to death but the woman can get to be a bit much sometimes, but she's always about family. My father is half Jewish and half Protestant English, that's where the Elliot comes from, if you were wondering. He is quiet but a good man, he usually lets my mother do most of the talking and deal with most of the drama. He's great with the kids though, always has been better with dealing with children than most adults, I think. Yes, they seem like an odd paring, but good parents without failing. I've brought them through all of my trials with me, and I don't think they would have had it any other way. In the end of each they've still been there, and I doubt a time like this would falter that either. I left work around 4 to get to the hospital for another meeting, but this one slightly different. Maren and myself were going to have the first sit down with the oncologists since Avery was first admitted. We had spoken to them individually and during rounds about Avery's progress and future treatment, so an organized meeting scared me, especially since I wasn't really briefed on what this was going to bed about. I arrived a few minutes early to see Avery. Just in time to see him throwing up what I'm guessing was lunch. My mother was holding a plastic container in front of him while Maren talked him through it (like he needed a pep talk on how to do it). My Father was admiring the nice view through the multi-colored glass. I knew if the old man were in the thick of it he'd be sick himself. Avery was in fact the first to spot me in the doorway, in between heaves. He laid back when he finished, totally letting his mother and grandmother clean him up and do what they wanted with the scene. He was exhausted from the ordeal. His little chest struggled to catch his breath and he looked confused and dizzy to what was going on around the room. He looked at me a second time as I made my way to the bed, passing Maren handing the nurse his handy work and across from my parents. "Hey kiddo. Did lunch taste as good the second time?" he giggled as my mother scolded me politely. "The doctor's are expecting us downstairs in five minutes," Maren acted like I rained on her parade, as usual. "I know, I just stopped up here to say hi first. I was actually wondering if you were going to stay here tonight." "I was gonna pick up the kids from the soccer game and take them to dinner," I love the way she knew my parents were here for the weekend and she wanted to take the kids for herself. "It's the weekend, and Liam is picking them up at 7 from Tina's." "What, does he not work anymore?" "You two, don't you gotta meeting?" my mother glided us out the door. Thanks mom. The trip in the elevator settled the matter; meaning Maren would stay here tonight. Not that it would have bothered me to stay with Avery, I'd probably lose sleep not being here anyway, but my own bed in my own house and a night with most of my family is something that I needed right now. I felt a twinge of guilt for pretty much neglecting Aiden and Ava all week. They've been in a permanent shuffle between houses and babysitters. They've written me notes and asked about me, I just feel bad that right now they're just going to have to take the situation for what it is. The Doctors greeted us in their friendly and professional matter as usual. Three of them sat at the table with us in what was no more than a lounge. Dr. Hastings, as well as two other, younger doctors were going to tell us no doubt what I probably didn't want to hear. The last few days weren't good ones for Avery. He was improving, but not steadily enough. His counts were still too low for him to be released for out patient treatment and remission wasn't in sight yet, though they had reassured us that within 6 weeks he no doubt would go into remission. "Mr. & Mrs. Elliot, thanks for coming," Dr. Hasting shook both of our hands as we sat across from them at the table. "We've basically wanted to go over Avery's progress and his long term care with you. Avery has been doing well, even though his progress has been small. We're hoping if he continues to do so without breaking too high of a fever in the next week, we'll be able to release him to your care by next weekend. What we need to discuss is the unique situation he is in." "Unique situation?" I was confused. If this is what I think it is I don't want to hear it. "We understand that many of our patient's parents are divorced, which can make a situation like this very difficult, " chimed in one of the other doctors, "but what a child like Avery needs right now is a stable environment. Now, we've reviewed both of your living arrangements and we want to make the following suggestion for Avery's care. You do not have to follow it, but it would be best for Avery," the sound of this so far has made me feel very uneasy. "So you think it is in the best interest that Avery stay with one parent full time?" Maren restated for them, "I don't see a problem with that, I have him most of the week anyway. I don't think it would be too difficult taking him the entire week." "Now, wait a minute. They didn't say that at all." "Mrs. Elliot," Dr. Hastings cut me off, "We actually feel that that might not be the best environment for Avery in his condition." "Are you saying that I can't give him that? I'm his mother. My house has been his home since he was born and I can take care of him there, you're not taking him away from me." "Alright, enough. I know this week has been stressful but you are both jumping to conclusions. We're just trying to show you your options. We don't have the authority to change custody agreements or place a child in a home, we can just tell you what is healthiest for your son. "Now I am fully aware that Mr. Elliot and his partner can give a lot more time and care to Avery. Two care givers are a plus Mrs. Elliot, no matter how much you try you'd need outside help more than that. We've also found that Avery shares a room in your home with a sibling. It would be more beneficial if Avery had his own space. His immune system is suppressed and another small child who attends school has a high risk of spreading bacteria to Avery." "I can move Aiden in with Ava and hire a nurse to be with him during the day. I don't feel as if this line of reasoning is fair to me being the single parent." "It's not fair, but it's what is best for the child at this time. If you want to hire a nurse that would be your decision, but it isn't really practical. Your insurance I doubt would cover it ma'am, and they would be a professional babysitter. Plus we know that the child has his own room in Mr. Elliot's residence, as both of you have stated previously. But our largest concern is the cat that you have as a family pet, Mrs. Elliot." "Oh for Christ sakes! I can get rid of the damn cat." "It's not that simple. Your house is older, and the cat adds an even larger health risk with mites and allergens. Point is, we strongly advise that Avery live with Mr. Arisson and Mr. Elliot, " Dr. Hastings made this point so clear I almost wanted to smile," The child's health is more at risk in your home, I'm sorry. Your central heating is old and you do not have air conditioning, not that it matters now, but it will next summer. Being shuffled around isn't good for his system, so no matter what you decide our most specific advice is that he stay in one home. When he enters remission and his counts are high enough, then you can rethink your current custody agreement and possibly sending him back to school. But for the present he needs to be in one home, " The three got up and made their goodbyes. I sat their speechless, admittedly relieved and somewhat happy. "I'll set up a bed for you and I'll get you a set of keys, Maren." "This is what you wanted, wasn't it? No, I don't want a key to your house, I want my son. Do you think I'll give him to you just like that?" "You're being unreasonable, Maren." "I know, but you don't understand what this means," she finally cracked and broke down into sobs. "Yeah, I do, but I won't do what you did to me. You can see him whenever you want." "Don't bring your holier-than-though bullshit onto me." "This isn't about me, Maren. This is about Avery's well being. In fact, why are you making this about yourself? You have been for the past few days. What you stand to lose, what you aren't getting. What the hell is going to happen when that damn cat of yours gives him a staff infection, huh? Why aren't you thinking about what they really said?" "I did, and I am. But there is no way you're getting full custody." "I'm not, Mar. Jesus, he'll just be living with me, you can see him and come over as much as you want. And the other two are still under the current custody plan, it's not like you won't have them either. I'm not asking for anything Mar, I'm actually helping you out." "I need time to think," she wiped her eyes as she got up and left the room. I still sat there thinking of what just happened. IN all honesty, that was the last thing I thought they were going to say.