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Until Lily

It was a good six months before Lily stopped asking where Jen was. She used a series of made-up signs and the word Mama to find out if her mother was still sleeping and if so, where? And – if I can be so presumptuous as to claim to read her mind – “Why doesn’t someone go wake Mama up so things can get back to normal around here?”

The day we went to court and I heard the judge pronounce us a family, a wave of queasy dread rushed over me. I felt like a fire jumper, those crazy guys who parachute from an airplane into a forest to fight a raging blaze. If the wind shifts and the fire starts coming at them, there’s no way out. That’s what it felt like taking on these three children. The wildfire was coming at me.

And yet, even for all my pessimism, I had underestimated the difficulty of what lay ahead. I never could have imagined how hard it would be. I have to be honest and say, if I had, I would have run. Very fast. And very far. I wasn’t the type who could have weathered such hardships. I wasn’t. But somehow I came to be.

There were days when the exasperation would build up so much pressure in my throat that I was afraid it would blow my head clean off my shoulders. One of those times was the day I had somehow managed to get all the laundry clean – even all the renegade socks that had escaped under the beds and the underwear that had been shoved behind dressers by their owners who thought it more efficient to hide them than to make eleven extra steps to the bathroom laundry bin. So there it was, on the large leather couch, focal point of the family room – a beautiful monument to domestic skill: Clean clothes, folded and stacked into towering piles, sorted by drawer of destination. It had been a two-day undertaking to get to this point, one day for collecting and washing, the next for ironing and folding. I had been able to reunite socks that hadn’t had mates in maybe three years. It was pretty pathetic how much joy it brought me to see them bundled and piled like firewood before the first snow. I had a nagging feeling when I left the room, something was going to happen to my masterpiece. What I couldn’t have predicted was how dreadful that something would be. Apparently Lily, upon seeing the clean underwear, suddenly realized that hers were not and decided to make a trade. One pair of underwear full of poop in exchange for a freshly laundered pair. In the process, unbeknownst to her I assume, she had parked her bare soiled bottom on top of the other clean piles of clothes, presumably trying to find a comfortable spot to make the swap. I’m just glad the plumber was there that day. If I had been alone in the house with that child, I might have killed her.

Jen had Lily almost potty trained before she died. But you still had to “remind” her to go. By remind, I mean, you had to drag her into the bathroom and wrestle her onto the toilet and listen to her scream at you until she went. Sometimes, when I just wasn’t up for the fight, I would decide to wait until she was willing to go. This never happened and invariably that tactic resulted in a big mess to clean up. This is when I would lose my patience with her because I knew she was just being stubborn. Then, she hated being cleaned up and would cry about it the whole time. “It’s no fun for me either,” I would tell her. “Can’t you feel the poop coming out? Can’t you stop yourself and run to the potty?” We got through that stage and then she’d only occasionally have a week here and there of relapse. Usually it was because she was sick – like with a cold or something. Now that I struggle with the same malady, I feel terrible for having scolded her. I’m sure if she could have controlled it, she would have, it feels so awful. Sometimes I catch a look on a nurse’s face and I know what she is thinking because I had the same thoughts. “This butt is too big for wiping.” There’s a reason they show behinds on Huggies commercials but not on Depends ads.

Last night, I had horrible intestinal cramps and rang for someone to help me to the bathroom. I must have rung for the nurse five or six times, at least. The cramps were getting progressively worse until I couldn’t stand it anymore, so I decided to get myself to the bathroom as quickly as I could. I didn’t want anyone else to have to clean up the mess that might ensue if I waited one more minute. I wheeled myself to the bathroom door jam and pushed myself up on the arms of the chair. As I did, another wave of cramps hit me and the whole weight of my body rushed to my shoulders, pushing me forward, face first, onto the cold tiles. I screamed out and lay there hoping it was one of the nice nurses who found me, although at this point, I would have settled for Benito Mussolini or even Nurse Gilda. I heard footsteps, and a pair of white shoes appeared below my eyes. There was a heavy sigh, and a couple of large hands grabbed me under my armpits, hoisted me up and plunked me into my wheelchair with all the care you would take with a bag of cement. It was Nurse Gilda.

“Mrs. Greeley, you’ve been told not to get out of your chair without help,” she said grunting through the weight she had to lift.

“I rang for help,” I said. “No one came.”

“You need to be patient and give us a minute to get here.” Her voice was coarse. This is not the way she would be talking if a supervisor was within earshot.

“A minute?” I said. “It was fifteen. I couldn’t wait any longer. I had to go.”

“Mrs. Greeley, you are wearing a diaper.” She said it like an accusation.

“Nurse Lowe, I prefer not to use it,” I snapped. “I prefer to use the toilet, just like all other humans who have passed the age of three.”

“Well, you didn’t make it anyway, did you?” She had the tone of spoiled adolescence, a bleached-blonde, sports-car- driving teenager rubbing it in for having beaten someone out of the lead part in a school play.

“I’d like to know, Nurse, do you enjoy being ugly to people or can you just not help yourself?”

I couldn’t believe that came out of my mouth. Normally I avoid bridge burning at this stage in my life. Everyone else, after all, holds the key to my sanity, and that sanity depends on the most inane things – like getting to the toilet in time. I am at the mercy of all. And mercy, I’m learning, if it comes at all, comes in limited quantities around here.

The nurse said nothing as she went about cleaning me up. Her motions were crisp and curt, in her effort to give expression to her forbidden enmity. The shower would have felt good, but I couldn’t enjoy it, knowing there was someone fuming on the other side of the curtain. Even if I hardly knew her or cared about what she thought, it still gave me the creeps to think she and I were stuck with each other. Neither one of us could go storming from the room in a silent, sour vow never to speak to each other again. Her shift was twelve hours long and then there would someday be another one.

But nonverbal hostility was nothing new to me. About six months after Jen died, Lily began to develop quite a temper. Most of her protests came in the form of very unpleasant noises. To show her dislike at the smallest offense, she would walk up to the laundry room door, which was always closed, open it, slam it back again and stomp off. Without words to tell me where to go, slamming and screaming became her primary means of communication. I know it must have been frustrating to have desires that no one would ever meet. Lily probably thought we were all callous, insensitive ogres – or idiots – because most of the time she probably wasn’t asking for anything unreasonable. Her wants were always pretty simple. The pink cup. Watch the show again. Find the Barbie and the Twelve Dancing Princesses book that we read the night before.

Sometimes Terry and Jimmy could figure it out and avert a nasty incident. They had a historical perspective on Lily that I lacked. Plus, they understood her primitive sign language, which she herself had made up. But trying to guess what this nonverbal child wanted wasn’t the most difficult part of taking care of her. It was being screamed or spit at when I guessed wrong. So half the time, I didn’t even try.

I used to read all of Jen’s bylines online. It had become such a habit that, after she died, I logged on to read her replacement’s columns. I e-mailed her often and she was always happy to talk to me because she had been close to Jen. One day, Calli Flannery wrote a column about a day she spent in a mental institution. When she got there, they issued her headphones that would feed a continuous thread of chatter into her ear. The unnerving device was meant to replicate what it is like for a schizophrenic who hears voices inside her head. I e-mailed her and told her that if she wanted to see real insanity, she should come spend a day at our house. “By the way,” I wrote, “where can I get a pair of those headphones? It might be a nice change from the kids yelling at me.”

In addition to being miserable at home, Lily was miserable at her new school too. I would get reports from the teacher that she had thrown something across the room or scratched or bit another student. Jen had told me Lily was stubborn and had a bit of a temper, but she never mentioned anything like this. One day, I realized that the anger started right around the time she stopped asking about Jen. I think she finally accepted the fact that her mother wasn’t coming back. That’s when the fury set in. I wasn’t sure what to do. It’s very difficult to explain things to someone who has questions but can’t ask them. Was she wondering why her mother went away? Was she wondering why people die? Was she wondering if other people would start dying too? I decided I would have to address all the questions she may have just in case I hit on one of them. One Saturday afternoon, I took her out for ice cream. I waited until she was done with her cone and then I said, “Lily, you know that your Mama died.” She nodded.

“And you know she’s not coming back?” She just looked at me, sort of puzzled.

“When someone dies, Lily, you can’t see them again. They don’t come back.”

“No.” she said. Sort of a question.

“But I’m going to take care of you now.” She nodded.
“You and Terry and Jimmy live with me now and I’ll take care of you.”

She nodded and smiled slightly. “I will be like your Mama.”

“Mama,” she said, smiling wide now.

From that day forward, she called me Mama and eventually Mommy. She couldn’t say Auntie Bev anyway, which is what Terry and Jimmy continue to call me to this day.

After the ice cream talk, the incident reports from school gradually decreased and she became a student with model behavior. She even got student of the week in her school, where she spent the majority of her day in classes with typical students. I had to put up a bit of a fight to get the school to agree to put her in regular classes because it’s more work for them. They had to assign her an aid to help her through many of the subjects. It’s much easier and cheaper to have all special needs student in one room with a small team of teachers and aides to educate them. But we tried Lily in one of those resource classrooms and she was miserable. I never found out why, but I knew she couldn’t stay there.

- - - - -

About a year after the kids moved in with us, they began lobbying for a dog. It started as Terry’s dream, but soon she had enlisted Jimmy and even Jack to pester me as well. And every time someone would talk about getting a dog, which was at least two dozen times a day, Lily would look at me with raised eyebrows and slap her leg, which is a sign she had learned for “dog.” It seemed overwhelming to me to take on one more thing that needed my attention. But I promised the children if they got good grades, we would get a cat. Their studies had understandably suffered a bit since Jen passed away and I thought they could use a little incentive. I also was hedging my bets that they couldn’t pull their grades up all that quickly. Well, they must have really wanted an animal because the next grading period, they got all A’s and B’s, with the exception of Jimmy’s C in math.

So off we went to the pound. There weren’t a lot of de-clawed cats to choose from. I really didn’t like cats all that much. I had no good memories of them from childhood and two particularly bad ones. One is a vague recollection of my aunt’s cat Buster who scratched me once on the back of the hand when I tried to pet him. The other is a vivid memory of a skinny white cat with icy blue eyes who was the family pet of the boy I baby sat. Any time I glanced at that venomous animal, she would hiss and snaaah at me. She gave me the creeps, and I had what I thought were irrational fears of her pouncing on my neck and biting out my adam’s apple if I ever were to happen to fall asleep there. One evening after the boy had gone to bed, I was sitting in the reclining chair watching TV. I reached down to scratch my ankle or something and suddenly, I felt something sharp slice my skin. The cat, who was apparently hiding inside the chair waiting for her opportunity, reached up through the gap in the upholstery and scratched my arm. I was so shocked, I quickly closed the chair. After washing up the scratch, I considered letting the cat out, but I feared she would come at me with a vengeance. She was making no protests, so I hadn’t felt any urgency, but it was nearing time for the boy’s parents to come home, and it had been close to two hours since the chair incident. I started to wonder what kind of hardware was inside a reclining chair. Could the cat have been killed instantly when the chair closed? How would I explain that to Ice Queen’s owners? I finally got the courage to pull the lever on the footrest, and the cat bolted straight out of the room. She never looked back, and I never agreed to babysit at that house again.

The lady at the pound said it was best to get a cat that still had its claws. She said de-clawed cats are insecure with their environment because they have no way of defending themselves. I guess that made sense, but I still wanted a cat that wouldn’t slice open a baby sitter’s forearm. I also worried about Lily. I wasn’t quite sure how she would treat an animal. Would she try to pick it up by its head, put pantyhose on it, hold it down and spoon feed it spinach? In my mind, the more defenseless the animal, the safer Lily was going to be. And the safer the cat would ultimately be because it was going to end up right back here on kitty death row if it so much as looked at us funny. Of course, none of the cats were there because they had scratched anyone or ripped apart the sofa upholstery or climbed the curtains. No, these were all perfect felines, whose heartbroken owners had to say goodbye for the sake of their asthmatic children. I had no idea before visiting the pound what an epidemic asthma had become. Of course, all the dogs where there because their owners were moving to an apartment that doesn’t allow pets.

We ended up bringing home a cat whose claws were intact because that’s the one the children fell in love with. It was a beautiful cat named Sunset. Orange and fat with green eyes. But I can’t say having claws made him any more secure. For the first two weeks we never saw him. He staked out a hiding place under my bed. The children tried to bait him out with tuna fish and feathers taped to drinking straws. I wouldn’t let them stick their hands under the bed and I wasn’t about to try to pull him out, so there he stayed. Until one morning, I came into the kitchen and found Sunset and Lily under the table. That cat was actually letting her pet him. After that, he warmed up a little to the rest of the family. But Lily’s were the only hands he ever permitted on him for more than thirty seconds at a time. Maybe because she moved slowly and she was predictable, unlike the other two children.

As disenchanted as I am by cats, I am indebted to that one. Lily had never been able to make a “K” sound before Sunset. “Kitty” had become her new favorite word. That’s what she called him most of the time, except during bedtime prayers. She would make the sign of the cross and say “Mama, Sun-sun, Terry, Sun-sun, Jim, Sun-sun, Lily, Sun-sun.” Then she’d make the sign of the cross again and say “Amen.”

There must have been something to all that praying because that cat lived well into Lily’s 20’s. Lily stayed in her room for a week and cried when Sunset died. On the eighth day, I went and got her a black kitten, which won her over the minute she held it to her face and it gnawed on her earlobe. She was able to take Midnight with her when she moved into the group home. The cat became instant friends with the old black dog without eyes that already lived there. The previous owner set the dog on fire and he lost his eyes to an infection that set in due to the burns. He does just fine without his vision as long as he stays around the house, I guess because of a dog’s amazing senses of smell and hearing. His name is Jasper and Lily talks about him all the time. Probably as much as she talks about the people, most of whom are young with mild to moderate mental disabilities. The couple who runs the group home is good folk, in their late 50’s probably. They seemed so happy to get Lily. They took her to the store with them and let her pick out the wallpaper for her room before she moved in. They had to do quite a bit of work on it after the last resident took a key and carved the upper-case alphabet, his version of a United States map and the American flag into the drywall. When I asked them how he had done such extensive damage without their noticing it, they said they knew he was working on it and just let him continue his months-long project because it was a creative endeavor, and it gave him something to do. Walls are easy to fix, they said. I figure any couple with that kind of outlook would have more than enough patience for Lily.

I know they say once a parent, always a parent, and that even when your children are grown, you are still responsible for them, you still worry about them and there’s a good chance that you’ll be coming to their assistance more than once past their 18th birthday. But no one really knows what it’s like to be a perpetual parent unless they have raised a child with mental retardation. The condition stretches the entire process out and there one day comes a realization that all the struggles are not going to end any time soon – if ever. For me, that realization came at Barnes & Noble. Right before leaving for the book store, I had told one of my friends on the phone that I could handle everything but the screaming. Since Lily couldn’t talk, the only way she had of communicating her displeasure was to scream at the top of her lungs and hope that someone would be adequately annoyed and give her what she wanted. Any forward- thinking parent knows not to give into that, just as you don’t give into the 2-year-old who uses that same tactic. But remember a typical 2-year-old is progressing at a speedy rate and will move onto new tactics once he realizes that particular strategy doesn’t work. Children with Down syndrome are going to linger there for a while. All of this I intuitively knew, so I didn’t expect the problem to go away overnight. I was, however, shocked by this spectacle in the bookstore. A woman in her mid-50’s was walking ten paces ahead of a young woman with Down syndrome, whom I thought was about 20, screaming at her mother “Mama, Mama, Mama.” Everyone in the store, I’m sure, thought that the daughter was yelling because she wanted her mother to slow down and that her mother was so insensitive, she refused to walk at her disabled daughter’s pace. Me, I knew what was going on. That mother was trying to get away from the screaming she had put up with for two decades. And right there I saw a flash-forward of me and Lily. I was going to share a fate with this other poor mother. Our children were going to scream at us until the end of eternity and there was nothing we could do about it. There is only so fast you can walk to get away from your child. Then at some point, when the distance gets too great, you have to turn around and go back again, whether you want to or not.

My prediction was, happily, inaccurate and Lily did not spend the rest of her life screaming at me.

There were so many habits I thought she would never outgrow. Some I just gave up on. Like the shoving of enormous amounts of food in her mouth, presumably because the weak muscle tone made the food undetectable to the muscles inside her mouth. Then there was the very consistent practice of putting her shoes on the wrong feet.

“Wrong foot,” I’d say. Then she’d take them off, swap them and look up at me with question marks in her eyes. As if there was a third choice of how to put your shoes on. And then there were days when I was just too tired, or too frustrated or too late to tell her that her shoes were on the wrong feet. I thought for sure she’d notice something didn’t feel quite right after an hour or two, but she never did.

Having no training at all in how to raise children, much less special needs children, I probably expected too much. There are moments in the life of every parent, I’m sure, when you are absolutely certain that the behavior you are witnessing is the precursor to a life of deranged crime. If you could just know that these phases will pass, the pharmaceutical companies who produce medications treating anxiety, high blood pressure, ulcers, headaches, heart attacks and insanity could close up shop. But parents don’t know from moment to moment if they are dealing with something typical and benign or whether Ted Bundy’s mother would share similar stories of her boy growing up. Thinking things are going to get easier with some on-the-job training is simply naive because each child is a wholly different creation and each minute ushers in a new and different crisis.

And some of the same old ones as well. I know this seems like a trivial thing, but it was really quite a problem that Lily had this way of making her armpits disappear when she didn’t want to be picked up. People with Down syndrome have super flexible joints. I have baby pictures of Lily sleeping with her feet up by her ears, her legs perfectly straight. It’s what makes it harder for them to learn to walk and it’s why they move through the world slower than everyone else. Well, not everyone. There are always us old folks with Parkinson’s. At least my mind hasn’t slowed down yet, which is good enough for 78 years old. I’ve always been one of those “things could be worse” kind of people. I don’t know why that mantra never saw me through when it came to Lily. I allowed myself to be tormented by the things she couldn’t do or did slower or didn’t do as well. I spent my life watching her and wondering what could be the reason for all this? Was all this really necessary? I suppose if I were the metaphysical type I would have come up with some theory – like there’s a unique role, a certain need in the universe for a Lily- ness that only Lily can fill. This wondering and always being perplexed and vexed was something new for me since Lily. I had been neither a seeker of truth nor a pilgrim on a journey. Just a used book dealer, who came home every evening to her three- bedroom home, poured a cup of Seattle’s Best, popped the foot rest and read the latest best-selling memoir. A philosopher I was not. Not until Lily.

So Jack and I muddled through, each in our own way, each in a way that made the other crazy. He used to say I liked to borrow trouble. He thought I was always looking for something to get all over the kids about. Jack had this placid, detached technique that the kids loved. When I had to go out, I always wondered if the house would still be standing when I got home. The difference between Jack and me was this: If I’m in charge and a kid picks up a match, I immediately take the match away, sit the kid down and give him a 15-minute lecture on the dangers of matches, drag him to the internet to look up fire safety, garner six weeks of his allowance to pay for medical bills of burn victims and make him write “I will never play with matches” 50 times in his neatest hand writing. If Jack is in charge, on the other hand, we will all end up standing in a smoking pile of charred rubble with the so-called head of the household asking “OK, now, what have we learned from this?” I suppose we could have made a good team if we would have seen and understood that we balanced each other out. But children are a very difficult thing to compromise on. You simply can’t let the other person have his or her way if you think your child will become an arsonist because of it. So arguments ensue. Many of ours ensued in front of the children, which I regret. Jimmy used to try to ease the tension at such times by doing thoughtful little things, like bringing us cool drinks or tidying the pillows on the couch. Terry would slip off into a book or silently escape into a miniature world of plastic animals. She either pretended not to notice or she was oblivious to the fighting. I always assumed it was the former, because she was never oblivious to anything else. Lily would walk up to one of us, try to get eye contact and say “Hi.” She would do this 10 or 15 times throughout the tiff, seemingly testing to make sure she hadn’t become the object of our outrage. All three children would be on their best behavior through the entire quarrel and often up to a half hour after. I’m assuming they either felt responsible for causing a rift between us or they thought one of our heads would explode if they added any more aggravation to our angst. I feel sorry that we made them feel they had it within their power to send us over the edge, but I have to hand it to them for having the decency not to.

The differences between mine and Jack’s parenting styles were particularly apparent in public places. At some point during an outing, Lily would show her displeasure with us by plopping herself down in the middle of the floor, taking off her shoes and refusing to respond to any of our requests. So as to avoid a scene, Jack would enter into negotiations and promise her all things short of a Falabella pony if she came into quiet compliance. Now, I heard somewhere you should never negotiate with terrorists, so I would have preferred that he pick her up in a fireman hold and whisk her to the car. If she screamed all the way there, so be it. Eventually, she would learn her technique wasn’t going to work.

Eventually, of course, never comes soon enough. No one quite gets it in the beginning. When children with Down syndrome are small, you can’t possibly know the amount of work involved in the next twenty years. You’re in for the same ludicrous behavior we’ve all come to expect from little kids, but it comes at you encased in increasingly bigger bodies. After they reach a certain body mass, brute force is no longer an option. You must learn to outsmart your opponent. You can’t, for instance, pick up an 80-pound kid throwing a tantrum in the middle of the cereal aisle, hike her over your shoulder and head for the door. But you can break out into the chorus of her favorite Cocoa Crunchies commercial in hopes of confusing her long enough with your willingness to make a fool of yourself that she forgets what she was throwing a fit about.

I had a few good years with the older two until the teen years hit and things got kind of rocky. I recognized that as a normal part of life, since I myself did that to my parents. I guess I made some mistakes in how I handled things with Terry and Jimmy, and we never really recovered the ground we had lost. As young adults they remained distant, I assumed almost resentful, though they never really said as much. I don’t know why they would be. I think things got better between us after they had their own children and realize how many mistakes parents make in a given day. Or hour. Lily never went through the typical teen rebellion. She continued to grow more attached to me. More loving and, I guess I would say, humble. She never wanted to leave my side. I know part of that was because the world is so uncertain for people like her. It’s not that most people are intentionally cruel. It’s just the logistics of dealing with her disabilities. Like who is going to be able to decipher what she is saying, other than her family and those skilled at understanding someone talking to them from inside a deep well with marshmallows stuffed in her mouth. Not that we got through Lily’s teen years without incident. She showed her independence by insisting on doing the thing she’d been told not to – over and over and over again. Like calling 911 when there was clearly no emergency. Then again, maybe she just enjoyed the lights and sirens too much to control herself. Or the police officers. So this continued – once a month or so for nearly a year, until I asked a policeman to respond to the 911 call by putting handcuffs on Lily and placing her in his squad car. If she hadn’t been so repentant – sobbing like a baby – he might have had to drive her to the station to make his point, but she was already scared enough. It was probably the most brilliant consequence I ever came up with. Lily didn’t dial 911 again until 18 years later, when she found me face down on the kitchen floor. But only after she threw herself on top of me and commanded me to make a full and immediate recovery.

“Mommy, Mommy, you have to get up,” she sobbed into my back. “You can- jus- lay there. Who be my frien-?”

I think that must have been the first moment Lily understood that I am not immortal. She had endured losses before, but they had not presented themselves in her child-like sanguine psyche as any sort of a trend.

She wasn’t the only one coming to a grim realization. I had always known Lily would be orphaned again someday, but I had not expected it to happen so soon. I had planned to live into my 80s. I lay there wishing I was younger, wishing our family was larger, wishing I knew someone whose life was set up to wrap its arms around Lily’s, embracing all the peril and delight therein. The lives of Lily’s siblings do not meet that criterion. I lay there in that moment, paralyzed in body, flailing in mind. Why did Jen have to make this so difficult? I uttered a silent plea. “Please, Jen, if I live to see another day, give me permission to break my promise. Surely, by now, you must realize I made a promise that should not be kept. What could be so dreadful about the man you had once chosen to love? If truly there is but a thin veil between Heaven and Earth, let me hear your answer.”

I heard nothing but the lamentations of approaching sirens.

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"A Novel Gift: Until LIly" by Sherry Boas (CatholicMom.com) Background image via Pexels, CC0 Public Domain.

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