The Gift

The holiday season is a time of reflection for me each year. I am reminded as I prepare for each celebration of just how rich my life is and how filled with love. All of you who have supported our family with your prayers, words of encouragement and gifts of time and money mean more to me than you know. You give me the strength to get through each day with a feeling of belonging and wholeness. You make me brave and strong. As I dash around in my Red RAV 4 picking up Christmas goodies or decorate my tree I am surrounded by your kindness and generosity. Below is just one story of the goodness I have been the recipient of. I know you will recognize the person in this story. She is an inspiration to many. She has her own battles to fight and yet she makes time to help others. Thank you Julia.

The Gift

It was Mother’s Day and the poodle was dead. I had just had my coffee when I discovered its limp body lying in its bed. Its tongue was hanging out. Not a good omen. Mother’s Day always made me anxious, at least ever since my husband, Alec, had become ill. Now I would have to explain the dead poodle. How long could I leave it there, I wondered? Could I hide it? I didn’t cry. I had bigger things to grieve over, and right now I was just mad at the small, curly dog. How dare it die on Mother’s Day? I threw a blanket over it. I had this frozen, panicky feeling. I would think it over while I went to pick up some things at the store.

I got into the car and turned the ignition key. Nothing. The battery was dead. Now I started crying. My whole life seemed to be about death. I reached into the glove box for my “Rescue Remedy.” It was a five- flower formula. Just a few drops on my tongue, and I would calm down. I wasn’t sure the effect was due to the unique combination of flowers or the good French Brandy that comprised over 50 percent of the blend. I wrapped my arms around myself and leaned my forehead on the steering wheel and cried great heaving sobs. Not for the dog or the battery, even though they were both dead, but for my husband who was dying slowly of the most bizarre disease I had ever seen, Huntington’s disease. A black hole of an illness that sucked the life out of the person who had it and consumed all the resources that came in contact with it. So far it had taken his mind, his emotions, his personality, his speech, his coordination -- and with it, the love of my life. For ten years now, I had ceased being a wife and had become a caregiver. Today I felt very alone.

This was what Alec used to call my Birthday Week. My birthday was on May fifteenth; about a week away from Mother’s Day. This year was a big birthday—my fiftieth. I will admit that before his illness, Alec really spoiled me. On birthday week, he would shower me with daily gifts and surprises. Mother’s Day was an exceptional gourmet lunch, usually prepared by him. Fresh hand-made pasta or sushi, picnic style, in some beautiful spot he had chosen. He would have the kids select plants, and he would plant them in the yard; roses, lilacs or deep blue hydrangea. Birthday gifts fell into different categories. I would always beg for some practical item like a leaf blower, and he would declare how unromantic a gift that was. He would buy it first to get it out of the way. Then he would take me shopping for a new outfit, arrange for a Spa visit and on my actual birthday day, he would take he would take an all dressed up me out for a lavish dinner. But that was all over now. He was ill, and I was poor. This last year he had deteriorated to the point that I had to quit my job and care for him full-time, while trying to raise a family and survive on his disability check.

Somehow I had managed to get through Mother’s Day and trudge through the beginning of the week. I contacted friends to get together with me on my birthday so I wouldn’t be sitting and sulking alone. One especially kind friend volunteered to host a party in her home for me. Now I had something special to look forward to, but still I was lonely. Mid-week I noticed a large envelope in the mail from someone unknown to me at the time, and I tossed it onto the desk with my other unopened mail to be processed at some later date.

On Friday, my birthday arrived with little fanfare. After the children were off to school or jobs, I sat alone on the front porch throwing a party for myself, a pity party. I cried desolately and complained bitterly to God. After a bit, I decided I needed a drink to replenish lost fluids. I got an iced tea from the fridge. It was beautiful out, so I went and got the unopened mail to process on the front porch. Settling down in my favorite chair, I began opening mail and sorting it into piles, sipping iced tea in between pieces. Finally I came to the large, strange envelope. The return address was a woman’s name I didn’t recognize.

Curious, I opened the envelope and slid out a small moleskin notebook and a letter. It was from a woman named Julia who explained that she had known my husband in high school. He was “the most handsome boy in school’” she wrote, and he was my dance partner in dance class. He was a year older than me and in my brother’s class. We really didn’t hang out after school hours. The summer after I graduated, she went on, I became very depressed and spent most of my time in bed. I wasn’t even planning on college; I was so discouraged. Then one day Alec came to visit me. My mother let him come up to my room. He sat by my bed and told me I was missed, and he encouraged me to come out and enjoy the summer and to go to college in the fall. His plans were to study in Italy in the fall, but he promised that if I would get up, he would write to me. I did get up, and he kept that promise. Every month I would receive a funny and uplifting letter from him. It changed my life. When I heard of his illness and about your family’s struggles, I was so sad that I wanted to send a little help. I looked in the little notebook and stuffed inside were gift cards: cards for Home Depot, Nordstrom’s, restaurants, Starbucks, and Visa cash cards. There was enough for all the birthday gifts that Alec would have given me, and enough to treat the kids and Alec. I wondered if Julia would know how much this really meant to me. I was glad I hadn’t taken in the Kleenex box. I was crying again. This time my tears were bittersweet.

God had not forgotten me. He had seen to it that my husband’s kindness and love given to someone from long ago would reach out and give to me, for him, on my 50^th birthday. It was more than magical. It was a divine appointment, and I didn’t feel alone anymore.

Unstoppable

Unstoppable

I thought Alec might enjoy a movie, so for our Saturday Date I arranged to have his attendants meet me at the Regal Theatre. I had planned on seeing a comedy but when we arrived I realized that I had misread the schedule. Looking at the movies available to us I settled on “Unstoppable” with Denzel Washington. It was an action movie about a runaway train. I bought the tickets and Alec and our entourage filed in.
“Peace, do you guys want anything from the snack bar?”
“No we’re fine.”
“How about you Alec? Let’s get you some Charleston Chews, you love those.”
I purchased the candy and some popcorn from the uniformed clerk and then
found my way to the theatre. I gestured to a row in front of the middle walkway banister. I loved to put my feet up on it during the movies and disliked having people sit in front of me.
“How about these four seats? I said indicating four seats in the middle next to each other.

“We’ll sit behind you,” Peace said, “give you some privacy. We can get to him quick enough if he needs to use the restroom or something?” Usually we had two male attendants but today Peace was with a woman who was new to me and unusually quiet.

“Fine,” I said, leading Alec by hand down the aisle my sneakers sticking to the floor where someone had dropped a soda earlier and making funny squeaking noises.
“Alec, lets take your hat off.” I took the soft helmet he wore from his head and placed it on the seat next to him. The hat was really very funny looking. It was a knit navy blue stocking cap pulled over a foam helmet that he wore to protect his head in case he fell. It was large and lumpy, resembling a cross between a wasp nest and a turban.

All was going well as Alec snacked on his chews and sucked down his frozen icy drink. Then suddenly he rose put on his hat and started down the aisle.
“Hey, where are you going? Alec?” He didn’t answer. Behind me I could hear Peace stand up quickly, but Alec was quicker. He was down the aisle and heading towards the front of the theatre before Peace could get to the end to the row. I heard Peace’s phone drop and saw it slide down under the seats. He reached down to get it and now Alec was walking up and down in from of the picture his head and hat silhouetted on the screen, walking back and forth like a duck in a shooting game at the carnival. Peace and the girl were heading down to the front- but Alec was out the emergency exit door.

I can’t believe this, I thought to myself. Should I go get him? Damn it. I had spent years chasing him and he had two people after him so I decided I would just watch the movie until they got back. A few minutes later they popped back through the emergency exit and guided Alec out of the theatre towards the restrooms. All was well.

Before they returned ushers emerged from the back with muted orange flashlights and headed to the emergency exit. They went out and then came back in flashing their lights up and down the first few aisles as if looking for something. Convinced that all was secure they left. I couldn’t help smiling. Alec and his attendants came back from the restroom and they helped Alec to his seat.

“He must have been heading to the restroom.” Peace said. “He should be okay now.”
We all settled back and became absorbed in the movie.

At a particularly tense and dramatic part, Alec again pops up from his seat and grabs his hat, heading out of the aisle and towards the emergency exit rapidly. He staggers like a drunk bumping into chairs on his way and now I can almost feel the eyes of everyone in the theatre on him and me.
Peace curses under his breath behind me, and hisses to the female attendant to please help as he tries to move quickly down the aisle. It is too late, and I think to myself “Ladies and gentleman, Alec has left the theatre.” Sunlight streams in as the emergency exit opens and Alec steps through onto the sidewalk outside and I am amazed that with his lack of coordination not only is he still on his feet, but also outrunning everyone. Within seconds the ushers and their little orange flashlights are back. They have multiplied like amoeba and they are shining their lights up and down the aisles. They go over and check the emergency exit door. Puzzled they mumble to each other and leave. No sooner have they gone than Alec and his unusual posse return and he is guided back to his seat once again. Peace is annoyed and murmuring that he is not working with any women again when he is with Alec.

“Alec you need to stay seated or they are going to kick us out of here. Do you understand?” I say. He nods.

“Home,” he says.

“You want to leave already? The movie isn’t over. You’re ready to go back to the hospital?”

“No. Home.”

Suddenly I understand. This has been an escape attempt. He had not needed to use the restroom and then got lost. He wanted to escape. Where did he think he was going? He can’t even go to the bathroom alone. What kind of disease causes you to have so little self awareness that you think you can take off from a movie theatre and head home with no car, no coordination, no speech, no money; but this is Huntington’s disease. I look at him incredulous. He thinks he’s well. He is so not well. He thinks he’s normal. Everybody in the theatre but him thinks he is not even close to normal.

I am relieved when the movie ends and we head towards the lobby. There in the lobby is the Maggie Moo ice cream mascot, a large black and white cow. The lobby is warm and I feel sorry for the poor individual who is trapped inside the furry costume.

“Alec let’s get your picture with the cow.” I pull Alec over arranging him next to Miss Moo and take out my cell phone camera. “Smile” I say and then take a coupon from the cow. “C’mon we’ll get you a shake to take back to the hospital with you.”
We head over to Maggie Moo’s and I order Alec a large coffee milkshake. We sit while he drinks it a bit and then he gets up to leave. “Alright, you can go. Come on I’ll take you to the car. He takes the full shake and heads to the garbage can. “Alec, no! You can take that with you.” Before I can stop him he has thrown it in.” Five bucks down the drain. More consumption of resources by Huntington's Disease. The black hole of diseases, it sucks everything around it in, money, time and energy. I think of the movie, “Unstoppable.” This afternoon the only thing that has been unstoppable, is Alec.

Thanksgiving

By 4am Thanksgiving morning I was crying so hard I was vomiting. Alec had been calling over and over all night long.
"Thanksgiving pass? Home? I love you."
"I love you too baby, but we are not going to have our celebration with you today, we will have it Friday"
"Thanksgiving, home." he repeats.
"Yes we will have a thanksgiving but it will be at Dylan's, okay?"
He says okay but then calls back 20 minutes later and starts again. I know how much he wants to come home, but he is never coming home because this disease is the cruelest on the planet. The fact is that when he comes home he is on his own property, his "turf". At that point he will promptly throw both of his attendants out the front door and then head up the steep stairs, probably falling at least once, and then barricade himself in his room. It will then take several policemen to get him out and back into the car to take him back to the hospital. It will make a great story but I do not want to live through it. While thinking through the decision about how to handle Thanksgiving with Alec I see one awful scenario after another in my head. The picture of he and his two attendants falling down the stairs breaking off the banister and putting a giant hole in my wall comes to mind, followed by the court scene where I am sued. None of these scenes make me feel peaceful or thankful. On the other hand the piercing guilt I feel coupled with the emptiness of not having him present is agonizing. I didn't know it last year but that would be the last holiday we would spend together in our home. In the piece "My Hero" I describe what it was like to wake up Thanksgiving morning with a well Alec. It was perfect. What you cannot describe to others who have not lived through the loss of someone close to them is the fact that it never gets easier or less painful. You can still be happy and still enjoy your days but always with a giant hole in your gut that the wind whistles through.

The children helped do the cooking and cleaning this year and we had a good time together and a lovely meal. The day after we had a Thanksgiving lunch with Alec . I think he enjoyed it. It was so painfully sad to me that it was difficult to function. In the end I was just glad the holiday was over and things could get back to normal.

I sat at my desk and prepared to pay the bills. I opened up my on line banking and opened up the checking account. There was no money in it. Where was Alec's Disability check? The check for the children had been deposited as usual but where was Alec's. I felt suddenly sick as I realized what had happened. Without any kind of notice or discussion, the hospital had made themselves Alec's payee and taken the money that we were living on. I was completely unprepared for this. A difficult and sad holiday season had just gotten much worse. Now there would be no money for Christmas, no money for bills. I looked at what I had in savings. Enough for two months, if we made some serious cuts.
I needed to pull off yet another miracle.

What my Husbands Friends Taught Me About Love

Free at last, free at last, thank God Almighty I'm free at last!

I am referring to my fancy new wheels. I have been spotted recently tooling around town in a 2000 Toyota RAV4, with the windows down blasting FM hip hop. I am no longer stuck at home trying to hitch a ride from one of my children in one of the other two old cars I own and am only allowed to do the maintenance on.

Honestly, I was too embarrassed to speak before now. I needed time to digest this recent act of unbelievable sacrifice and kindness. Truth be known, humility is not my strong suit. I may be short in stature but my ego towers over me wearing a "Capitalist Pig" tee-shirt and only feels good about receiving a return on investment.

It was a Saturday morning when I noticed the envelope on the front door step as I let out the cat. I brought it in and tossed it on the couch and proceeded to the kitchen to pour myself a mug of French Roast. People are impressed with how I always get up early, but without the smell of French Roast nothing would be able to rouse me before noon. I nursed my morning mug and read a little, as I always do, and when I felt sufficiently awake I tore open the envelope and pulled out the contents inside. I was stunned. I browsed through the many checks noting the names of people from whom I had already received generous support and my face became inflamed and tears began running down my cheeks and as much as I tried I could not stop them. I think its was about this time that poor unfortunate Sophia, our ten year old, came into the room and asked what was wrong.
"Nothing." I said.
"Why are you crying?"
"I said nothing! Don't you have anything better to do?"
She retreated rapidly into the kitchen to soothe herself with a bowl of cornflakes.

I headed for the stairs and into my bedroom where I felt safe. The moment had catapulted me back to a night several years ago while I was attending a bible study small group. They knew of my situation with my husband because I had tried to bring him along one time, bad idea. Over our pre-study snack one of the women said,

"My children were complaining last night because they weren't getting the color of new laptops they wanted. I told them that they should appreciate what they had and stop complaining and then I told them about your poor family and its struggles. Just think, I said, your father could be sick and you could be at risk for that disease"

I stood there dumb. I was the "Sad Story", you know the one you tell your children or your neighbors when they complain about their circumstances. I had never until that very moment envisioned myself as the "Sad Story" before. I was horrified. What was I supposed to say? Thank you? I knew she had meant it to acknowledge our grief and as a compliment to our fortitude but somehow it felt bad, really bad.

I try never to think about my situation in too big a way. I mean, I try to experience the day, moment, week I'm in.
In the moment, I am happy. I am enjoying whatever I am doing at the time like speaking with a friend, having a nice lunch, doing housework, pushing a lawnmower, enjoying a nice walk around the lake. I feel, in the moment, that my life is happy and that I am competent and have everything that I need. I go around grateful and peaceful most of the time. Even when I am sad I try to restrict my "sad" to just the sadness of that thing in that moment, if you get my drift.

I even believe that I have a wonderful life. I think back over all the years I have spent with Alec and I think what a rich and beautiful life we have had. I try to make the most out of what we have left by bringing something fun to it everyday. I feel successful. I feel that I am doing a good job. Then someone makes me the "Sad Story" and my viewpoint changes.

I am truly ashamed of this but looking at all those checks I felt like a massive failure, and I was scared. For a moment the room just spun around and I saw a different picture. I was a near widow, with no job, no savings to speak of and my future was threatened with the very real possibility that I would be repeating this again with the unspeakable chance that it could be one of my children. I needed this money for the car and I truly had no other options. I felt powerless. I became for that moment the Sad Story. Horrible, I know.

For the next week the checks would sit on my desk where I would feel intense anxiety just looking at them. I had a very busy and important week and I could not deal with my emotions or the idea of buying a vehicle until I could finish what was on my plate. It was a key week which could make a big difference in how Alec and others who had his disease would be treated now and in the future. A clinical study had been arranged where I think 40 to 50 medical staff members at CRH at all levels would be attending, and Dr. Mary Edmondson of our local Huntington's Disease Center for Excellence here in NC would be the guest speaker as well as many of the staff at Dix that had been successful in caring for Alec. It would all be taped so it could be used over and over to educate other personnel on HD. My mind could only handle one big thing at a time.

The study had gone well. Dr. Edmondson spoke about HD and how it affected the brain and behavior and different ways of caring for those with the disease. But the real turning point had come when one of the Techs (attendants) from Dix who had cared for Alec got up to speak about how to care for my husband. His name is "Godswill" I swear. This is on tape and I will try my best to get a clip of this for everyone to see because it was beautiful. I can't remember everything he said, but here is some of what I remember.

"My name is Godswill and I sometimes took care of Mr. Brough at Dorothea Dix. When I take care of a patient I always say to myself that we are only one day apart. Today I am healthy tomorrow I could be Mr. Brough. We must treat those we care for with respect as if they are an honored father or brother. If we cannot do this then what are we doing here? Mr. Brough is a good man, a gentle man and he does not want to hurt you. I love Mr. Brough he is like a brother. When I walk with Mr. Brough I don't walk behind him pushing him, I don't walk in front of him, I walk next to him. I put my arm around him if he seems to be falling or I take his hand. Mr. Brough is not hard to care for, I could take care of him all day long walking next to him. Speak slowly to him, one thing at a time, and wait- he will answer you. He is very smart and understands more than you know. If you speak to him like a friend and don't command him he is easy to care for"

He spoke for maybe ten minutes and there was not a dry eye in the house. I thought back to where we had started from and I could not believe how far we had come. From simply clinical care to care from a position of love and humility. Wow. Godswill had seen Alec and not the disease.

I came home and there on my desk were the checks. I started to see them differently. We all need each other and like Godswill said we are all just one day apart. Alec's gentleness and kindness to people he met over the course of his life and the people he would meet now was just coming full circle. Through our lives we give and receive in season and it was planned this way by the creator so we could experience both our separateness and our unity. Now instead of viewing this as charity to someone who wasn't pulling her weight, a drain on society, my view was shifting, It was a circle of love with each one of you joining with me to care for Alec out of honor to him and belief that we could make a difference if we all worked together. We weren't the Sad Story, and we weren't alone.

I tell you truthfully I now ride around in my Red RAV4 feeling surrounded by love and support and the car itself has become a symbol of how beautiful our life is and how precious. You have given us more than just a car, but hope and love and feeling of unity, blessing and encouragement so that every where I go in it, I never go alone.

Thank you, you have been the hand of God extended.

Falling

I had settled into the sofa. No, I had melted into the sofa, my body deliciously relaxed. My eyes were fixed on the large flat screen TV and I was experiencing the euphoria which the show "Pawn Stars" reliably delivered. It was Sunday evening, the house was quiet and I was obediently following the commandment to rest.
My cell phone on the coffee table began to glow and then the much too happy little ring tone began to play. I
allowed my eyes to slant in its direction without turning my head, CRH flashed on the screen, the hospital. "Oh good grief," I said out loud and reached for the phone while simultaneously pausing the DVR.
"Yes," I said.
"Is this Ms. Brough?'
"It is."
"This is the on call physician at Central Regional Hospital. I am calling to inform you that Mr. Brough has had a fall."
"Okay."I said.
"He appears to be fine but he does have a laceration on his head that will require some staples or stitches and I would like him to have a CAT Scan to be sure there is no internal bleeding. We will need, to take him to Durham Regional Hospital for this."
I have been hit by an emotional Mack Truck. I begin to immediately experience chest pain and nausea. Not because he is seriously injured, but because I feel directly responsible for this; and for good reason, I am.

"Okay." I said.
"Mr. Brough will not cooperate. He refuses to go."
Of course he does, I think.
" Do you think you could speak with him and convince him to comply?"
I think nothing of the kind but I reply that I will try and have them put him on.
"Hey baby, I hear you had a fall."
"No." he said,
"You didn't fall?"
"No."
"Well, the doctor seems to be convinced that you did. He would like you to go to Durham hospital to have it checked and so would I. "
"No, I'm fine." he said.
"I'm sure you are but you may need a stitch. I will meet you there."
"No, I'm not going."
"Don't you want to see me? I coax. I'll come there and meet you and we can have an extra visit."
"No, I'm fine."
So much for my magical abilities. I tell the Doctor that I haven't convinced him. He tells me that they will have to use a Posey Vest to secure him in a wheelchair. I tell them good luck with that and that I will meet him and the techs at the hospital. The techs are his attendants, and he always has two.
With great difficulty I extract myself from the couch and reluctantly exit "Pawn Stars" saving it for later. I grab my laptop and Google up Durham Regional, it is a 35 minute drive. Halfway there CRH calls again. They still cannot get him out to the car. I ask what they want from me. They would like me to try again to convince him. I am once again unsuccessful.

"I'm sorry, my wand appears to be out of order."
"Well, the doctor says he has to go, any suggestions?"
"Have you tried a tranquilizer gun?" I ask.
"What?" the nurse said. No sense of humor this night crew.
"I'm sorry, I don't know what to tell you except you can say I am there waiting for him."

I arrive at the hospital and wait over half an hour before he finally arrives. I am taken back to room ten where he is lying quietly on the gurney. He is very calm, almost asleep, and I wonder what cocktail induced this delightful state. His two attendants rise to greet me.

"I see you opted for the tranquilizer gun." I quip. They smile unsure of how to take my comment. "I'm joking,"
I assured them.

There is blood on his pillow and I lift his head gently to have a look. It doesn't look too bad but think it will probably need a stitch or two.

Was it only this last week that I signed papers explaining my position on restraining devices and interventions that could help incidents like this be avoided?

I, Lisa Brough, wife and guardian of Alexander Brough, hereby make known my wishes concerning his care at CRH regarding falls risk. The document goes on to explain that I am aware that his disease will insure that he will have falls and that those falls could result in severe injury, including paralysis and death, and in spite of advice from the team at CRH I have declined the use of retraining devices and other interventions that irritate Alec and that I feel limit his freedom and take away from his quality of life. It does not say that I am familiar with stories of other HD patients that have been strapped into chairs and tied to beds to avoid injury and how many quickly gave up in apathy and depression to bed sores and infections... It does explain that I believe that although being tied to a chair in a Posey vest might prolong his life (and I am not truly sure of this as I feel the exact opposite may be true) what kind of life would that be? I want him to live the rest of his life with dignity. I also believe that this is Alec's wish. I'm convinced I have made the right decision but staring down at Alec on the hospital gurney that evening I realize it will be hard on us both to live out this belief.

After a cat scan that shows no brain damage, other than that caused by the disease itself, a couple of staples and a dressing that reminds me of an old Shirley Temple movie where Shirley is wandering through a hospital looking for her wounded father, they take him back to CRH, and I go home to be alone with my guilt.

In my defense, I have consented to one device, a soft helmet. It is constructed of foam and covered with terrycloth. It is attached to the head by an adjustable velcro flap and it is hidden under a not so fashionable navy blue knit cap. I am pretty sure he will refuse to wear it; no, I am positively sure he will refuse to wear it. I will have to be very creative to get this to go over. I know Alec's friends will be arriving in a couple of weeks and I am counting on their help. I ask them all to please get navy blue knit caps to wear and to present the soft helmet to Alec as a gift when they come. Our daughter Morgan refers to Alec's friends as "Dad's Posse" and they came through for us in a big way. Without the loving warmth and courage of this devout group, not to mention their great sense of humor , Alec and I would undoubtedly be making many return visits to the emergency room for staples. This was the beginning of the "Happy Hat Club", so named by Phil as he presented the gift to Alec. I am trying to get the video of this event posted but I must put pressure on my teenage daughter who for some reason does not like to give me the pictures and still will not friend me on FB. In the meantime I have borrowed a couple of pics from Phil's FB so you can see the results for yourself.

For all those with loved ones who have HD, I know how hard the decisions you must make for those in your care are to live with, and you are always in my prayers.

Apple Picking

Big, sticky, crisp caramel apples. When I think of Fall I see them in my mind and my mouth salivates. Morgan made one batch for us last week, which was eaten in the same day. The tradition has been successfully passed down to the next Brough generation.

One of the things I miss the most about New York is apple season. Alec and I would take the children every year to pick apples. We loved Fishkill Farms. It had fresh sugared doughnuts for sale, along with apple cider, pumpkins and a whole store of fun fresh farm made products. The children loved it for the pony rides and petting zoo. Alec and I knew that their favorite thing about apple picking was that we let them drive the car through the orchard. Oh, yeah, we are really cool parents. We also let them ride in the trunk; we didn't shut it, we left it open and drove around hitting bumps as they and the trunk lid popped up and down. Alec believed that life should have theme music, like the movies, so he chose different music for different family activities. Apple picking music was Hayden's trumpet concertos and Pachelbel's Canon in D major, full blast.

Besides music choice he was extremely picky about the fruit. Being a Cellar Master, fruit was his thing and he undertook the choice of which trees to pick from with great care. It was for the rest of us tedious. "Can we pick yet?" the children whined as Alec slowly made his way through each section tasting from each of the trees. Finally, we would see him smile and know that he had located a spot with just the right balance of sugars to acids, the perfect crispness, precisely the right snap to the skin, and we would be unleashed. Under his watchful eye we would climb the trees and be directed as to which branches held the best picks. He always made sure there was a wide variety of apples and in his mind he had planned them for each special dish. Those just for eating, those for pie, those for caramel apples and, of course, those for applesauce.

We would drive home our hands and faces still sticky from cider and sugared doughnuts feeling that wonderful kind of relaxed you get from being outdoors all day in the sunshine and the cool fresh air. Always that same evening Alec would have his hands in flour rolling out pie crusts- only he could make them, I was banned from this activity as I overworked the dough and made it tough. No amount of his patient instruction could overcome this flaw of mine, so I was the one who peeled and sliced apples. He liked to get a big pot of soup on too, maybe his split pea or oxtail. The smells of savory soups and cinnamon apples, the fragrance of Fall and family and Alec and love.

Halloween Home

The happy, upbeat, mechanical tune jars me awake. I look at my cellphone on the bedside table, it is 4:23. I know who it is.
"Ms. Brough?"
"Yes."
"This is the CTU at CHR, Mr. Brough is awake and he would like to speak with you."
"Okay."
"Heeeyyyy." Low, drawn out and soft. It has been his greeting to me since we first met. It brings me immediate pain that hits me right in the chest. I am vulnerable in this half asleep state. I haven't had time to brace myself for the day.
"Good morning baby,how are you?"
"Good." His voice is breathy and slow.
"I miss you, I'm sorry I wasn't able to see you this week. It was a rough week." I have terrible anxiety about this. "Paul fixed the car, it was just a loose battery cable."
An easy fix, a twist of a bolt but diagnosing it had taken up the window of time I had needed to make the hour drive out to Alec. It was very hard to see him now that they had moved him so far away. I had applied for a pass to take him out on Monday, but he had figured out that I was coming on Mondays and it didn't go well. The first call had come as I was trying to get Sophia out the door for school.
"Ms. Brough, this is Dina the head nurse on CTU. Mr. Brough is very agitated. Did you tell him you were coming?"
"No, but I think he has figured out that I come each Monday."
"Well, he is very upset and is trying to get out of the unit. He is taking swings at the techs and he has fallen twice. We have a call into his doctor."
"Do you want me to speak to him?"
"We can't get him near enough to the phones right now, we can't get him calmed down."
"I'm not going to come, just tell him I'm not going to come." I hang up. I figure they won't approve my taking him now anyway. They are still getting used to him and they don't want to have him visiting if he is agitated, and if he knows I am coming he gets very agitated. I could fight my way through this, I did last week. Coming anyway and insisting they bring him to me, all agitated, and showing them that as soon as he has access to me he calms down immediately. I had discussed this problem with them at his treatment planning meeting. "We understand from the staff at Dix that Mr. Brough gets agitated when he knows you are visiting because he anticipates your arrival." his doctor states. I flippantly remark that I have this affect on men. It really isn't funny and today I have no fight left in me. I am weepy and emotional, not a face I want to show the staff there. In fact I don't want to deal with Huntington's Disease at all. I want to pretend this is over and that it is a normal day. Then I do something incredibly selfish. I make an appointment to get my hair cut and colored. I have nothing left to give anyone. It is time to refill my tank. I figure I will make it up to him by popping in on Thursday when he doesn't expect me.
On Wednesday I go shopping and buy him new movies, new shoes and other personal items. I cook a delicious pasta sauce with pork tenderloin and portobello mushrooms in it. I will bring him a nice home cooked meal. It is a privilege I had to fight for as they did not allow outside food. Thursday morning I get ready packing up the meal and all my gifts and head off. Five miles into the drive the car begins turning itself off. A big knock followed by all the lights on the dashboard lighting up and then the car starting by itself again. It happened over and over as I turned the car around and brought it back home. I called and said I wouldn't be coming again. Stupid car. Last week it had been $500 for a new ignition. This had at least been a cheap fix.

It has been eight days since I have seen him when he calls this morning.

He mumbles something I don't understand.
"What baby?"
"Halloween."
"Halloween?"
"Yes."
"Your looking forward to Halloween?"
"Yes, home. Halloween, home." It sounds like Haaall ohh weeen Hooommme.
"You want to come home for Halloween?"
"Yes, candy."
"Halloween candy, oh, you would like to come home and have some Halloween candy. You remember I keep the dishes filled all month. Let's see, you would like some Milky Ways and Kit Kat's right?"
"Yes, I love you."
"I love you too, I will bring you some candy when I come this week,okay?"
"Okay."
I chat some more telling him about the week. Then I say goodbye.
"Home,"he says again, "Halloween, home."
"You want to go Trick or Treating with Sophia?"
"Yes."
I think this would be hysterical. He won't even need a costume. We'll just let him wear the institutional scrubs, that with his frozen facial expressions and his drunken Frankenstein gait will be the scariest thing our town has ever seen. Couple that with the fact that we are not allowed to go anywhere without two monolithic black men on either side of us within arms length and you have quite a show. I've requested that the attendants wear suits and ear buds so that we can look famous and not crazy but so far I've not gotten this. For some reason they think I'm joking.
I realize he is serious about this and I am running it through my mind. They will not allow him to ride with me, he must ride in the state car with his two companions. I consider how this will make our little Sophia feel as the car follows along behind her and her friends as they trick or treat. Hmmm, not good. Perhaps he can visit during the day, being there for pumpkin carving and an 'Al Fresco' lunch. That sounds better.
"I will ask the doctor, okay?"
"Okay, I love you. Halloween, home."
"I love you too sweetie,see you this week, bye."
"Bye."