Excerpt for Accepting the Unacceptable Alone by , available in its entirety at Smashwords







ACCEPTING THE UNACCEPTABLE

ALONE





JoAnn Flanery



Copyright 2012 JoAnn Flanery

Smashwords Edition

All right reserved





INTRODUCTION



Accepting the Unacceptable Alone is an autobiographical novel that begins the day my thirty-nine year old husband died in my arms of a massive heart attack. Adjusting to his death was hard enough on its own, but I also had to face the fact that now it would be up to me alone to raise our severely mentally and physically handicapped daughter.

Several years later we found out that in order to get the special services she needed we were going to have to move across country, away from our family and support system. Little did I know that soon after our move I would be facing another unacceptable challenge–breast cancer.

Tears blended with laughter as I traveled down this long bumpy journey, but the lessons I learned gave me an inner strength I never knew existed, and with strength came peace and finally acceptance. The reader will learn how I did it, how I stumbled, and what I learned from the falls.

A great deal of research was done on the grieving process, breast cancer, and cerebral palsy. Women will relate to me because I am just one of them, a normal woman living a not so normal life. Hopefully, my experiences and advice will help others get through similar situations.

Enjoy!





CHAPTER 1: DUANE



I shall know why, when time is over. Emily Dickinson



Being the mother of a disabled child is far from easy, but who said motherhood was easy. We all have our problems they are just different. But with the support and help of a loving husband the good times can be very good, and the bad times manageable–as long as we have each other….

Duane B. Flanery, my husband of sixteen years, died at home in my arms, of a massive heart attack on October 19, 1982, the day after his thirty-ninth birthday. In one split second I went from wife and mother to mother only.

As the paramedics worked on Duane, I sat on the floor in the doorway of our bedroom, hugging my knees against my chest, and watching their every move. Why didn’t he open his eyes? "Open your eyes honey," I whispered.

For one split second time stopped, the two men turned around and seemed to see me for the first time. "Are you all right?" one of them asked.

"I don’t think so." Just as they left for the hospital my friend Marion walked in. She took the blanket off the couch and wrapped it around my shoulders as she backed me away from the cold breeze blowing in from the open door.

"How long have you been standing here? You are shivering, get dressed and I will take you to the hospital." Just then a car pulled up.

"Marion, my babysitter is here will you please let her in?" Slowly I walked back to our bedroom–there didn’t seem to be any hurry. I stepped over the debris the paramedics left as though it had always been there and got dressed. Marion held the car’s wheel in one hand, and mine in the other as we followed far behind the speeding ambulance on the twenty minute trip that seemed to last one hundred hours. The whole time my brain replayed what had happened. Maybe he wasn’t dead; I’ve never seen anyone die. What do I know? No one had said anything. Please God let me be wrong! Besides, why would they take him to the hospital if he were already dead? There was still hope ... but my heart knew the truth.

A nurse took us to a small room off the emergency area, but I stopped at the entrance. "No, that is where you take people when someone has died (how I knew that is still a mystery to me), no, I won’t go in there!" Maybe if I didn’t go in it wouldn’t be true, but I did. She sat me down and held me close until the doctor arrived. "He is dead isn’t he?" I asked in a whisper, as my body slowly rose from the couch. "Please, Mrs. Flanery, please sit down," the doctor said as he reached for my hand. "NO, HE IS DEAD ISN’T HE?" I shouted.

"Yes." At that moment my soul left me in the form of an unearthly guttural cry. I still can’t believe that sound came out of ME! Then there was nothing–no pain, no fear, nothing.

"Marion, we have to have a funeral, I can’t do this, help me." The doctor let go of my hand and asked, "Mrs. Flanery, do you want to see him?" I looked at Marion, and she said I should. Slowly I walked with the nurse into a large dimly lit room. Empty, except for a foggy, almost glowing white table in the center. I stood there staring, unable to move. The nurse squeezed my arm and drifted out. The table seemed miles away, too far to walk, yet so close I could reach out and touch it. My husband lay there, very still, and very gray. They had wrapped him tightly in a white sheet and there were tubes coming out of his mouth and nose. I tried to speak, but nothing came out. Finally the words came, though I have no idea what they were, or how long they lasted. As I bent over to give him one last kiss on his forehead, I remember thinking it felt like a cold stone, just before the blackness slipped over me.

John and Joanne, my brother and sister-in-law, were waiting for me outside the room. We cried and hugged for a very long time before finally going home. I know it was unreasonable, but I didn’t want to leave Duane there all alone he hated hospitals.

I will never forget the drive home from the hospital. The sun was so bright, and the air smelled so clean. It was a typical early October morning. Even the traffic was heavy. How could life just go on like nothing had happened, when my whole world had just ended.

My whole family arrived by the end of the day, Mom and Dad (Harry and Jane Stewart) from Florida, of course Duane’s parents (Georgia and Basil Flanery) from Muskegon, Michigan, Duane’s brother and his wife (Mike and Mary Flanery) also from Muskegon, and of course John and Jo. They all stayed until after the funeral on the 23rd, Mom Flanery’s birthday. I guess I ate, but I know I didn’t sleep. All I did was cry. In fact I cried constantly for three weeks, and had to literally force myself to stop because my throat hurt so badly.

The first night I stayed in my daughter Chrissy’s room. The doctor had given me a sedative called Seconal, and as I lay there I could literally see blackness creep across my eyes until there was nothing, but I was still conscious and my brain was still working. The drug finally took control and the blackness invaded my dreams. I only slept for half an hour, but as soon as my eyes opened I got up and threw the Seconal down the toilet ... it made things worse and scared me.

There were so many things that needed to be done immediately. I decided on the Hamilton Funeral Home in Birmingham because that is where Grandma Stewart’s funeral had been and I remember it being a nice place. Clothes had to be picked out, a casket selected (this one I could not handle, so both sets of parents did it), a minister notified, and the service planned. Burial arrangements had to be made. We didn’t expect to need cemetery plots at our age, so of course we had none. Oakview Cemetery in Royal Oak, where my grandparents were, was my choice. When Dad and I got there, I asked the woman who was helping us if there were any plots in section J, and explained that I would like to be as close to my grandparents as possible. She had only three left which were together, right next to where Mom and Dad would be and behind Grandma and Grandpa. I took all three. I felt a chill creep over my body and a smile start to form. Thank you God! This made things so much easier. The woman said they would rush to finish the headstone in time for the burial as this was very important to me. I had a terrifying dream that I went to visit Duane’s grave and couldn’t find it.

Of course, we notified the State of Michigan where Duane worked for fifteen years. He was a supervisor for the Michigan Employment Security Commission. It didn’t take long for his pension checks to start coming monthly. Pension checks, I remember how excited Duane was when he came home and announced that he could retire now, because he was eligible for a pension. We both giggled.

Social Security was also on the list, and I was surprised to learn Chris and I would receive it, she as a father’s death benefit, and me because Chris was handicapped and in my care.

The funeral went all right I guess, but I don’t think I was really there. It was surreal to think Duane was in that casket draped in flowers. I could not go to the gravesite service–it was too much for me. I don’t know what I would have done without Mom and Dad’s help. I had no idea what needed to be done, and even if I had known I couldn’t have done it alone. Thank you both!

A strange thing happened several days after Duane died. My mom, mother-in-law, and I were sitting in the kitchen having a long conversation. We all read the same devotional book daily, and I asked if they had read it the night before Duane died. Yes. "Well didn’t it scare you?" Odd look from both. "But it told of a young wife and mother of a handicapped child whose husband died of a heart attack the day after his birthday." My mom looked blank, and my mother-in-law started to cry. "Wait I will show you." I ran down the hall and got the book. My whole body shook violently as I read out loud the story of a banker in Ohio. "But … how can this be? I know I read it because it gave me chills, and I said out loud, 'NO GOD NO.' I had been warned of what was coming.

Mom and Dad stayed on for two weeks, and slept in our room, where it happened. I couldn’t even go in there to get clothes. All I saw was me holding Duane, and the debris the paramedics left. A few days before Mom and Dad went back to Florida, I decided to go into the room. I was afraid that if I didn’t go in there soon I never would. For fifteen long minutes I sat on the bed and had a talk with myself. That night I actually slept there. There was no sign that Duane had ever been there. After returning from the hospital, I threw everything of his out into the backyard. My rage was truly not human. The only thing I had forgotten was the clock that sat on his dresser, the clock I never took my eyes off of, while straining to hear the siren of the ambulance on its way to our house. So, I opened the window, and smashed the clock on the front porch. Then I slept.

The Methodist Retirement Home has a room waiting for you. That was what the letter I received shortly after Duane died said. I’m not going to comment on this one, except to say the Methodist Retirement Home had better check things out a little more before offering. I was thirty-seven years old and trying to deal with a funeral, burial plot, social security, pensions, headstones, and I didn’t need this too.

My thirteen-year-old daughter, Christine, finally came back home the day after we buried her daddy. Chris is handicapped, and there was no way she would be able to understand what had happened. The day he died a babysitter came over and took Chris home with her. She stayed with her special education teacher Claudia Pisa and her husband for that week. Claudia has a permanent place in our hearts and I truly don’t know what I would have done without her. It was the first time I had been separated from Chris, but I couldn’t take care of me, let alone her.

For weeks Chris looked everywhere for her daddy ... he was her everything. She used to sit on the floor by the door to the bathroom and watch him shave every morning, then crawl into the kitchen and climb up in her chair, so she could eat breakfast with him, and finally go to the door to say goodbye, where she would stay long after he left and cry. After he died, Chris crawled around the house like a crazy person, crying. She went to the bathroom, no Daddy, went to our bedroom, no Daddy. Every night she waited for his return from work. She climbed up in a chair by the window at the time he was due, and watched for his car which never came. How many times can a heart break? It hurt me as much as it did her, but I couldn’t show it–she was confused enough, and so was I. I explained over and over that Daddy had to go bye bye, and Daddy could not come home, but Daddy loves Chrissy, and Daddy loves Mommy. To my special angel that meant nothing she just wanted her daddy.

At night Duane used to sit on her bed, as she was going to sleep, and talk to her about her day. She would giggle constantly. I used to stand quietly in the hallway and listen to the two of them. After he died, I tried to do the same thing he did, but I was no replacement. One night she really freaked me out. All of a sudden she got very excited and pointed to the door, waving and giggling like crazy. I slowly turned around, almost scared, and all I saw was an open bedroom door. Every night from then on Chris waved at the door and then went to sleep. Who knows?

In the meantime I cried, screamed, threw things, and even rammed my fist into a wall. I had completely lost control. Had I taken time out to enjoy one of God’s greatest gifts, shock, I might have been able to handle things differently. But there is a little problem with shock–it doesn’t announce, "Hi here I am, just relax and I will make you numb so you don't feel anything for a while." So what good is it if you don’t even know it is there? Really, shock IS a wonderful thing though; it gives your mind time to accept the unacceptable. But then just when you think you might want to live again after all, BAM the shock vanishes, and so do a lot of your friends, who think you are all right now. You look fine and you seem to be handling things as well as can be expected, so they return to their normal lives. But what they don’t know is that you will need them even more now than before because when the shock moves on PANIC moves in. The true reality of what has happened has hit you like a truck–I am alone and very scared. Panic is a nasty creature–very purple and very ugly. It turns you into a very purple very ugly person too. Thank God for true friends and family, they turn the purple into light lavender.

My dear friends, Betty Hussey, and, Dolores Bradley, knew I needed to be busy, very busy for those first few months. All I wanted to do was hide and cry, but they had other plans for me. I practically lived at Betty’s house. Every day she allowed me to invade her life. She worked on her porcelain dolls, while I learned, talked, and absorbed her faith and strength. Dolores all of a sudden wanted me to paint a large grouping of pictures for her living room. My hands and my brain became one again, and for a precious few hours every day I didn’t have to think. I am amazed they are still such good friends. I really put them through so much.

When you become a widow at an early age, you spell ALONE in all capital letters. It is so unexpected and so life altering. Your friends are married with children, and suddenly you are the different one, or your friends think you are. Granted you are changed, but you are also the same. I wanted to scream, "It is still me," but people don’t know what to say, so they say nothing. You don’t need to hear how sorry they are a hundred times, but you do need to know they are still there, and they love you. A simple hug can speak volumes.

A little advice I learned the hard way, mourning is like a roller coaster ride. One day you are up feeling almost human, the next you are down below sea level, the next you are halfway feeling human, and the next sub- zero, and on and on. When my ride was almost complete, I learned the reason for the long hard bumpy ride. There are five stages to healing after the loss of a loved one that you have to go through, like it or not. Grief is a cluster of different reactions and can overlap one another. The first is denial-There must be a mistake this could not have happened. Soon I will wake up from this terrible nightmare and everything will be normal again. Then comes anger, you are mad at everyone. The doctor who should have figured out something was wrong and done tests when the symptoms arose, and even God for allowing something so horrible to happen, why didn’t he take better care of himself, why did he leave me behind, he promised that he would never leave me. Depression follows-How can I go on, how can I live without him? This was not fair he was only thirty-nine years old and had so much more life to live, why did this happen to ME? I feel so torn apart I can’t concentrate and forget things. I feel like I have lost me as well as him-I am so empty inside like someone reached into my soul and emptied everything out leaving only a shell. Then guilt-I should have seen something coming, could I have been a better wife, I should have pushed for tests, was all this my fault? The final stage is acceptance-It is of course not an overnight thing and takes a lot of effort, but with time you will find the strength to accept an unacceptable thing. Give time time. Your life has changed forever but there is a certain peace that will come with this acceptance. If you will give yourself permission to grieve–accept this ride as part of your healing and know that the ups and downs are only temporary and very natural it makes the ride smoother. Don’t fight it. Remember you have an open wound and it goes deep into your soul. Picking at the sore will take it longer to heal. Acceptance is the scab that covers the wound. But even with the protection of the scab the healing is not complete, the wound is still there but it is just not as bad-acceptance lets the healing begin. To me it is the first step toward living again–you can talk about him, look at pictures, and finally remember the good times through less tears.

I wished I had known what was going to happen when my ride began it would have been comforting to know that at the end there would be acceptance. Honestly I don’t think I would have believed it could happen as there was so much grief and so many confusing thoughts.

Sylvia Browne, famous psychic medium, described grieving and how to help those going through it better than I ever could in a book called The Other Side and Back"–Riding the dark horse of grief is excruciating, hollow, numbing, enraging, and a deeply private process. It takes as long as it takes-no more, no less. That’s not news, just a reminder if you’re trying to help someone who is grieving. The word ‘should’ means nothing-how they ‘should’ be feeling, what they ‘should’ be doing, how far along they ‘should’ be toward recovery, when they ‘should’ feel like socializing again. I understand the urge to try to alleviate a loved one’s grief, but at its core is the fact of human nature that it’s painful and scary to witness grief, and often our efforts are more for our comfort than for theirs. No, the most helpful thing you can do for a loved one who’s grieving is, with respect, ride that dark horse with them so they’ll have something to hold onto until they’re ready to dismount and walk again."

Our first year was a nightmare, we existed, nothing more. I felt like a wind-up toy trapped in a small box, bouncing off one side and then the other, but never getting anywhere. We changed our routines, ate dinner early, so that when the dreaded 5:30 p.m. (when Duane got home from work) came we were busy. Everything got rearranged that could be rearranged, just to make things different. And all the while I felt like I had to prove something to myself, it had become almost an obsession. If something broke I was determined to fix it, even if it was more than I could handle, and could hurt myself trying. It didn’t matter, I was on my own now and more than a little stubborn, and was not going to ask for help from anyone. Besides, if I did ask for help, it would be like admitting I didn’t have control, and I desperately needed to regain control of myself, and my life again. I was afraid to trust or love again, because if I did they might die and leave me alone again. But if you don’t love or trust you don’t live, and life without living is not even an existence. Slowly, very slowly, we began to adjust, I allowed people back into my life again, took off the bandages that protected my wound, and let the cleansing air in. I never believed that time heals all wounds, but it does, or at least it wraps it in a soft pink blanket.

As I think back to the dark cold October morning, I can now say that although terrifying, I am grateful I could hold my husband in my arms as he died. We were one for sixteen years, we shared everything, and now we were still one and sharing one last time. We were together literally until death do us part.

When it is my time to go to him, I pray I will not be alone, and someone I love will hold me, and share a last goodbye. I have no fear of death, I just don’t want to die and leave Chris alone. Yet I don’t think I could go on if she went to her daddy before me. In fact, a little part of me would actually be mad, because then Duane would get to see her whole before me.

I am over it as much as I will ever be, and as they say, I have come a long way baby. Time replaced the frightened thirty-seven year old child with a self-assured independent woman. But even so, when the October sun shines and the smell of fall is in the air I hug my soul a little tighter and hold on.

Duane’s father, Basil Flanery, died of cancer nine months after Duane, so we got a double whammie. Pop was a strong man who loved his family and worked very hard to provide for them, but when you put one of his little granddaughters in his lap he turned to mush. We had so many long talks, just the two of us, and I still miss him very much.

On November 3, 2005 my mother-in-law, Georgia Dolan Flanery, died. She was a true Steel Magnolia, a woman of the south who had immense strength and dignity. She is missed by us all: My brother-in-law Mike, his wife, Mary, their children Kara and Erin, and her four great grandchildren Eric, Emma, Laine, and Lauren–and of course Chrissy and I.





CHAPTER 2: CHRISTINE



She flies on her own wings...Author unknown



Christine Yvonne Flanery was born on December 26, 1968–two months before her due date. We arrived at the hospital at 5:45 a.m., and the petite one was born at 6:05. Guess all my worrying about breaking the record for the longest labor ever recorded was for nothing, but it never crossed my mind that it would only take approximately one hour from start to finish. I stared in wonder at the tiny perfect little three-pound person, my daughter, who was screaming her brains out. I only saw her for a moment before she was taken away to meet Daddy. Later I found out that when the doctor found Duane, he said, 'If you want to see your daughter alive you had better come now.' By the evening both sets of new grandparents had arrived and while all were excited they were also concerned.

Chris’ short little life hung by a thread for the next three days–she was born too early, and her lungs were not fully developed. She was critical. Bless my mom who said that even if I delivered early (I started spotting in early December, and didn’t think it was a good thing, but my doctor said not to worry) the baby would be small but all right. I clung to that with every breath I took.

It was hard to go home without her. I remember sitting in a wheelchair by the elevator with four other new mothers, all were smiling and holding small bundles wrapped in pink and blue blankets. My arms were empty and so was my heart. But Chris had to weigh five pounds before she could be released. She lost half a pound after birth, so now we were down to two and a half pounds, and had a long way to go. It took a month just to gain back the half-pound

For two months we called constantly (some reports were good and some were very bad), and visited daily. Our visits were limited to looking through a window in the pediatric intensive care area. My baby lived in a big plastic box (with portholes and a thermostat) that sat under a big clock at the far side of the room. We could barely see her, yet we watched for hours. Once in a while an alarm would go off and the nurses rushed to her side, while I held my breath and prayed. Occasionally a nice nurse would take her out of the isolet and bring her to the window, but we could not touch our baby. Thirty years ago pediatric intensive care was different from what it is now. Today premature babies are held and touched constantly.

In the meantime, my leg blew up to three times its normal size. I couldn’t walk or even bend it. The doctor said I had a nervous leg. A year later another doctor diagnosed the nervous leg as phlebitis and said I could have died from the blood clot in my leg. So I was grounded ... no hospital visits. Duane did it, and sense he hated hospitals with a passion this was a very big deal.

To feel closer to Chrissy, I spent hours in the nursery she hadn’t even seen yet. The room was decorated in a circus theme with lots of happy colors. Bright red and white stripe café curtains hung from the large sunlit window, casting a warm glow across the room. Clowns holding balloons stood at the base of the small lamp that sat proudly on top of the new high white dresser full of baby clothes. Clown pictures smiled down from the wall over the big white crib as the animal mobile danced overhead. A bright red oval fringed rug cradled an over-sized rocking chair loaded with cuddly stuffed animals. The room was ready for its occupant and so was I.

At least once a week the doctor called and gave us a new terror to digest. Chris was born with an open patent ductus (the heart is supposed to close after birth but Chris’ didn’t). She also had a cleft palate, opening in the roof of the mouth and down the throat (the lip was not involved), which also closes at a certain stage of development, and Chris’ hadn’t. But the main problem was her breathing. We lived the terror all parents fear–our baby had stopped breathing, again, over, and over. What next?

Two months passed like two years, but finally Chris started improving. She graduated to an incubator and then was on her own in a tiny little plastic bed. We were able to see her up close now, still through a glass, and still no touching. We delighted in watching Chris move and wiggle. She and her bed were wrapped in a tight little blanket, with the head of the bed elevated so she could breathe better. With all the wiggling and her light weight, Chris would slowly slide down under the cover. A nurse would come along and lift up the end of the bed, shake it gently and out would pop Chris. This gave us quite a start the first time we saw it done.

I was allowed to feed Chris a couple weeks before she was scheduled to come home. Finally, I got to touch and hold my little angel. Right after birth she was whisked away, and for two months we were only allowed to watch, no touching. This was a momentous day, and I was so nervous I was shaking. She was so tiny that she fit in my hand, and I was sure I would break her, but I couldn’t get over the size of HER hands. Her nails were only tiny dots at the end of her busy little fingers, that could not even wrap themselves around one of mine. Eagerly she sucked the bottles nipple, watching my every move with her beautiful blue eyes. It was our first meeting and I was totally overcome with happiness. Chris’ first kiss from her mom was through a mask, poor baby. I even got to change her afterwards. A preemie cloth diaper had to be folded in thirds to fit her, and normal diaper pins looked huge on her doll-sized shape.

On March fifth, her due date, we finally got to take our four pound fourteen and a half ounce daughter home. All these months of feeling every emotion there was had come down to this moment. Being a new parent was scary enough, but with a special child like this, who was going to need extra care, we were more than a little scared! Neither of us was prepared for the demanding frightening job of being a constant parent. It took one and a half hours to get a half an ounce of formula into Chris. She kept falling asleep, and needed to be fed every two hours around the clock. Before feeding, a small plastic denture with a string had to be put in (with Polygrip) so she could suck. The string was there so we could pull it out and clean it. The cleft palate left the top of her mouth open and there was no way she could suck with a hole there.

I can truthfully say we did not sleep much for the first year. No one told us preemies needed to be bundled. She should have been put in a tiny bed with sides touching her sides. I am sure that is the reason she rarely slept. She didn’t feel secure in the middle of her large crib. Even when she did sleep, I was in there checking on her to be sure she was all right. All we did was feed, change, and hold her.

When Duane got up in the morning, he would go in and get Chris, wrap her snuggly in a little blanket and take her downstairs, so I could sleep a little more. One day I found him at the table reading the newspaper with a white bundle perched on his chest. Chris weighed so little that she just stuck there. When she became unstuck, her lingering warmth lasted for several more moments. How Duane functioned at work every day I will never know, plus he had to put up with me when he got home. I leaned on him too heavily, from fear and exhaustion, and almost drained him dry. Sometimes I wondered why he even came home.

About a year later the first in a series of BOMBS hit. We were dealing with the heart thing, and the cleft palate, but a routine doctor visit left my mom and me in tears. With no preparation, the doctor just announced that my little girl had cerebral palsy, and I was to take her to the Cerebral Palsy Center in Detroit. I stood there dumbstruck several choice as several adjectives raced through my mind stripping him of his lone title of doctor–this man no longer deserved that distinction. He KNEW what we had been through, so how could he be so uncaring and cruel?

That night, as Duane and I were discussing the doctor visit, I suddenly became very confused. When I was a child, there was a boy in the next block that had cerebral palsy and his whole body jerked all the time. I was afraid of him and wouldn’t even walk down his street for fear I would see him. But Chris didn’t shake so could the doctor be wrong? The next day I called the United Cerebral Palsy Association in Detroit and found out a lot of interesting things about cerebral palsy including what it is and what causes it: Cerebral palsy is damage to the motor part of the brain, due to lack of oxygen right before, during, or after birth, head trauma, or an infection. Because of the injury etc. to the brain, certain muscles in the body do not work normally. I was very surprised to learn how many types of cerebral palsy (CP) there are: The most common type is spastic, which we found out later Chris has. Spastic Diplegia CP: This type involves the legs, not usually the arms (it is very rare to have CP in the arms only) so the person can use their arms normally. The legs and hip muscles are tight and the legs can cross at the knees (scissoring), which makes it hard to walk. Spastic Quadriplegia CP: The severest of the CP’s, where the affected person has CP in all four limbs plus the trunk and face, which makes talking and eating difficult as well as walking. This may cause the person to be confined to a wheelchair. Spastic Hemiplegia CP: One side of the body is affected with stiffness while the other is normal. The arms and hands may be more involved than the legs. Many people with this kind of CP can walk but they may have a limp. Ataxic CP: The person will have low muscle tone and poor coordination of movements plus shakiness, which makes it hard to do fine motor skills such as cutting with scissors, turning pages in a book, or writing. They can have poor balance and be unsteady when they walk so they spread their feet farther apart. They may suffer from intention tremors which is a shaking that begins with voluntary movements–say a child is reaching for something and their hands are shaking, but the closer they get to object the more they shake. This is the least diagnosed of the CP’s. Athetoid Dyskinetic CP: this is the second most frequent type of CP where the person may have normal intelligence but the body will be totally affected by muscle problems. Sometimes the muscle tone is mixed either too high or too low and the person has trouble holding himself steady in an upright position when walking or in a sitting position. There may be trouble controlling facial movements that can lead to drooling and involuntary arm and upper body movements as well. Mixed CP: Muscle tone is too low in some of the person’s muscles and too high in other muscles. One fourth of people with CP have this type. Hypotonic CP: A mother may notice that her child has muscle control problems early in life ... like a floppy head that is not controlled when sitting up. Also motor skills may be delayed.

This was almost more than I could handle, and it was during this period that I lost my faith in God. I could not believe that the loving and forgiving God that I thought I knew could do this to such a little baby. It took me a long time before I realized that He didn’t do anything. This small soul was a gift.

We went to the Cerebral Palsy Center every day for three years, beginning in 1970, with my mother’s car–a twenty-mile trip through the heart of Detroit. Of course, there were police cars everywhere, and when one stopped next to us at a light, little Chris would smile and wave furiously, and they always waved back. Thanks guys! It was exciting to park in an alley behind the center and walk over the drunks with a baby, diaper bag, and purse in my arms. During that time Chris learned to crawl, had daily speech, physical and occupational therapies. We Moms went upstairs for our own therapy. Every day we told the others of our child’s problems and with admission came acceptance. Chris’ mental retardation was also discovered during the long difficult experience and was harder for me to take than the cerebral palsy. What kind of life would she have, would we have, in the years to come? The Cerebral Palsy Center in Detroit is a remarkable place filled with loving and caring people. I will always be grateful for what they did for us.

After the Cerebral Palsy Association, Chris got involved in the Title 6 program through Oakland County, an occupational therapist would come to our house and help Chris with whatever she needed. Then we went to Easter Seals for a short period of physical and occupational training. In 1973 Chris went to school, Wing Lake Developmental Center, a special education school in Birmingham, Michigan. I will never forget that first day. I put Chris on a miniature yellow school bus, gave her a big kiss, and off they went. I stood in the middle of the street watching until the bus turned the corner, and I felt so lost and empty. This was the start of a whole new life for her and for me, and as much as I thought I wanted it I started to cry. So much intense living had happened in the past five years and now my baby was leaving me. The people there became our family and the help and love she got was amazing. Chris had physical, occupational, and speech therapies every day, a swim program, and they went into the community for outings, even the circus (unfortunately Chris hated it, too many booms and bangs that she was not prepared for).

Here is a list of Chris’ happenings:


Feb. 1970-Roseola, hospital stay

May 1970-Found out Chris has cerebral palsy

Oct. 1970-Began program at the United Cerebral Palsy Treatment Center in

Detroit

? 1970-Cleft Palate Clinic in Pontiac-evaluation

April 1971-Mumps

Nov. 1971-Short leg braces for night

Feb. 19972-Found out Chris is retarded. Mentally 9 to 12 months at 4 years

Sept. 1972-Began Title 6 Program through Oakland County. Occupational

Therapist comes two times a week

Jan. 1973-Full length braces July 1973-Began Wing Lake Developmental Center

special ed. school) Birmingham. Stopped when we moved in 1991

Nov. 1973-Easter Seals Program through Title 6

? 1994-Got walker

Nov. 1977 & Dec.1977-Neuomuscular Institute-evaluation

May 1984-Allergies discovered


Surgeries:


Feb. 1970-Heart catheterization

Aug. 1971-Heart catheterization (closed in 1971 by itself)

Jan. 1972-Cleft palate surgery

Oct. 1973-Cleft palate surgery

March 1975-Heel cord surgery

June 1975-Cleft palate surgery

Aug. 1976-Hamstring surgery

Jan. 1978-Muscle transplant surgery

March 1978-Muscle transplant surgery

Oct. 1978-Hamstring surgery

Oct. 1983-Tubes put in ears

Jan. 1986-Replaced hip socket with part of pelvic bone-cut leg in half, turned

leg–three months in a body cast.

Sandwiched somewhere between all the above we decided it would be a good idea to have our genes tested, in case there was a problem with either of us that would repeat itself in another child, if we ever had one. All three of us were tested and nothing abnormal showed up. Chris’ damage occurred right before or after birth, there were no genetic causes. The other child never came, which I have always regretted.

We were busy, too busy, and forgot somewhere along the way that there was an US, Duane and I. It got to the point where I realized the more I leaned on him the farther he backed away, and when I finally stopped he still kept going. Thankfully, we loved each other enough to talk it out loudly and became an US again. Not many marriages survive raising a handicapped child. I think a great deal of Duane’s stress in the end was how, and if, we were going to manage Chris on a forever basis. He never said a word but I knew.

I used to be very sensitive to the way people reacted to Chris. She does not look retarded, her eyes are a perfect pale blue, and her smile melts souls. But she is in a wheelchair and can’t talk, so she makes funny little happy noises, and people stare. Thank God she does not (at least I hope she doesn’t) understand the looks that get thrown her way– the whispers of the ignorant. I feel so sorry for these people as they miss so much. Bless the children, they just come out and ask, "Why can’t she walk? Why can’t she talk? Why is she in a wheelchair? She is older than I am, and I can walk and talk." I explain it simply to them, they accept, and go on. That is it. It is done. They seek HER out. There is no avoidance.

I have tried to explain to Chris why she can’t walk, and she just smiles and sails away. She has cerebral palsy in her legs only, so she has made her chair her legs, and can do anything she wants to in it. It did hurt me at first to see my baby in a wheelchair, but her last surgery left her right leg two inches shorter than the other (it never grew again) so crawling was harder, and could damage the left hip, plus she weighed eighty pounds and I couldn’t carry her anymore. By the way, Chris got her chair when she was twenty. With all the surgeries, we had hoped that one day she would walk, but her legs are too weak, and her feet badly deformed (she has almost club feet). A doctor told me that in order for her to walk she would need seven surgeries on both feet. We finally gave up. She has been through enough and is doing fine the way she is. Chris can stand independently if she holds onto something, and gets in and out of her wheelchair with ease so there is no lifting on my part.

I had better correct that last sentence. There HAS been some lifting and pushing to get Chris into our van. Chris stands, holding on to the edge of the seat as I lift up her legs and give her a big shove, while she pulls on the armrest and the front dashboard and turns into the seat. It wasn’t too bad until we got a new van and there was nothing for Chris to grab onto to pull and turn into the seat, so she would just lie there across the seat flopping around and getting very angry. The new van was higher up which made the whole process even harder. After the first attempt, I learned immediately that ripping my guts out while pushing her across the seat and trying to turn her at the same time was not the smartest thing to do. There has got to be an easier way to do this that would not result in great bodily harm on my part. Nothing worked I tried everything. It looked like there was no other way but to banish Chris to the back seat, but what in the world would I do if that didn’t work. There are two-bucket seats back there and she would have to sit in the one behind the passenger seat, so I could see her while driving and she wouldn’t be able to grab me from behind. I tried the push in technique again but there was still nothing for her to grab onto as she couldn’t reach the armrest on the other seat. This is getting dumb, there has to be a way of doing this. Brilliant me decided to take the other bucket seat out behind mine, and give her some space to crawl across the area to her seat and then climb in on her own. It took a little work on her part to figure out how to get from her wheelchair to the floor of the van but with a little assistance from me lifting up her legs slightly she did it. YEA! Now she can get in with no trouble. She doesn’t like not having the full view of the front window but this is the best we can do. Getting out is a breeze for Chris, she just holds on to the back of the passenger seat and the side of the door and slides down to her waiting chair. My poor van is supposed to carry seven passengers but with the removal of the bucket seat and taking out the bench seating in the back, so I can get her wheelchair in, there is only room for three. It is very seldom that we need the extra seating space so all is well.

Footnote added after the book was finished: In 2010 Chris hurt her left arm and right leg somehow and could not get into the van at all and it made me realize that as we both age, even with no injuries, there may come a day when this could be a big problem for her and me too. So I got her an electric seat that cost about half the national debt that comes out and picks her up, and then glides her back into the van-looks exactly like our regular bucket seat but moves. Our first run was so funny, she sat there looking like this thing was some kind of a monster and then screamed and grabbed for me. Now we giggle through the whole procedure.

Chris now attends a day program called Hozhoni in Flagstaff, Arizona, after our move in 1991. Hozhoni (a Navajo word for happy place) offers two different programs: One is a Work Related Program, which allows the individual to work for pay in the community. The other is Chris’-a Day Treatment and Training Program, which helps the individual to learn skill development, i.e., self-help training, personal hygiene training, and other training specific to the individual being served. Both programs offer individualized training for any needs with which the individual may need help. Many thanks to Bill Schmidt (Director of the Day Program) he has helped me with so many things, so many times. Chris leaves on the bus at 8 a.m. and returns at 3:00 p.m. That is MY time, and I love every minute of it. I don’t think I could manage Chris alone if it wasn’t for Hozhoni. It takes a lot of hard work to have a life of my own, as well as a life with her. I don’t sit around all day eating bon bon candy, as Duane used to think, I put in a full day–really I have two full days in one–MY day and then at 3:00 I start CHRIS’ day.

Chris has a Harley Davidson sticker on the back of her chair thanks to Brenda Finch, a former provider. Her husband, Jim, had a Harley, and when they took care of Chris they all went to the Roadhouse in Belmont, Arizona and hung out with the rest of the bikers. Everyone loved her, bless them. She has a way about her that makes anyone who is willing to try to know her, love her.

Chris understands about 95% of what you say to her, and uses sign language and gestures to get her needs known. But still there are times when she wants something and tries everything to tell me what it is and I still don’t understand. Duane used to say she looked like a third base coach trying all the signs hoping that one of them worked. To me it would be like going to a foreign country where I didn’t speak the language and trying to make them understand what I wanted. Chris has never known any different but sometimes when she is trying so hard I know she must get frustrated and wonder why she can’t talk. Recently I wrote a short story about how I hope her questions are being answered. It is called Chrissy’s Secret. Someday maybe I can also get that published. I did in 2016.

Chris may be retarded but she sure isn’t dumb. One night I heard a smash in the kitchen, and out zooms Chris with this it wasn’t me look on her face. Then she took my hand, led me back into the living room, and pointed to the chair, "Sit down Mom." In other words, don’t go in the kitchen. When my brother got very sick, I had to leave in a hurry. I told Chris that Uncle John was sick, and I had to go and see him. She had not seen him in over eight years, yet she went into the hall, took his picture down off the wall (there are sixteen family pictures there, and only one of him and his family), pointed to him and cried. She did this several times while I was gone too. Wow! That blew me away. This kind of thing happens only once in a while, but it is so special when it does. I also think we are connected mentally. One day I was thinking about making cookies for us. Chris looked at me, made the sign for cookies, and went into the kitchen. ‘Splain’ that one. It was neat, but a little scary too.

Sometimes I think I am getting too old to be Chrissy’s mom. At fifty-five I had expected to have grandchildren, not my own four year old in the body of a thirty-three year old. I can’t figure out if she is trying to kill me or keep me young. This is no easy task! I love this precious child more than life, but at times I don’t like her very much. I guess all Moms feel that way at one time or the other. People are always saying, "How do you do it, I don’t know how you do it." Well people neither do I at times.

Depression, now there is a nasty word, especially when it points a finger at me. Since Chris was a baby, I have never allowed myself to think about putting her away–living somewhere besides with me, and it scared me to death when, after a particularly grueling weekend, I almost considered it. Usually, I just put my Kid for Sale sign out, and when there were no takers I resumed my duties. It was time to face facts.

When I have a big decision to make, and no one to talk to, or just don’t want to talk to someone, I make out a pro and con list, and it really helps. This time I decided to think of taking care of Chris as a job, listing working conditions, hours, money, fringe benefits, and came up with some interesting things. Working conditions–I am home and have free time to do whatever I want to do when she is at school; Hours–6:30 to 8 a.m. and 3:00 to 8:00 p.m., some nights and weekends; Money–because I take care of Chris I get Social Security, and don’t have to go out and get a real job; Fringe Benefits–I get lots of hugs and kisses. There is no job that would offer me all this. Of course, on the con side we have wet diapers, sleep deprivation, and general stress, but this is usually manageable because that is the way it has always been. Besides, group homes are not known for giving hugs and kisses, which Chris is used to, and needs. The workers only have time to do the basics ... that’s it. Also, this untrained older Mom would lose her Social Security if Chris goes into a group home, and would have to get at least two jobs just to be able to keep the house–so much for relaxation when I am finally free after a long day. Besides, I would worry constantly about her.

It is very hard for some people to understand and support my decision to keep Chris with me, especially after Duane died. I know they are only trying to think of what is best for me or what they think is best, but they forget that this precious child is my daughter, my only child, and just because she is not normal (whatever that is) does not mean we cannot have a full and happy life together. I may not be a perfect mom, but I am doing the best that I can, and believe in my heart that she is better off with me. I need Chris as much as she needs me. This is my choice and my life. Our normal may be different, but it is still all right.

It has been hard not to see my child’s first steps, hear her first words, or watch her grow up, get married, and have children of her own, but I don’t have to worry about where she is, or who she is with, or if she is doing drugs. So many Mothers have said, "I wish my child could stay this age forever." My child will, and I will get unconditional love always, no little con games, and lots of hugs.

Once in a while I have to remind myself that although I am alone I do get a lot of help from the state. The State of Arizona allocates money to DDD (Division of Developmental Disabilities), and then contracts with private organizations. Creative Networks is one of them. They find us providers to help me with Chris. I get sixteen hours a week of Attendant Care (basically personal care-assist in eating and transfers from her chair, cleanliness, laundry, etc.) and seven hundred and twenty hours of respite (babysitting, so Mom can escape). Amazing isn’t it? Granted, sometimes it is hard to find people to fill the hours, but my good friend Terri Peters (our facilitator) does her best.

For my own peace of mind, I set up a special needs trust for Chris through a lawyer and organization called Life Planning Services in Phoenix. They specialize in estate planning for the handicapped. That was so when, and if I die, she will be financially secure. Our house will become a group home where she can live forever. At least her surroundings will be familiar.

Footnote: In January 2006, thirteen years after this trust was born a new and improved one took its place. The more I thought about it the less appealing a group home sounded for Chris. With perhaps three or four other girls living in our house and a stream of different caregivers coming in and out all day, it would be very confusing, and Chris is used to a nice quiet life. I checked into several other alternatives and found there really aren’t many, and since no one is standing in line to take over when I leave, which I had hoped for but didn’t expect, I put everything into the hands of two local fiduciaries, with my friend Debbie checking up on them regularly.

For those who don’t know what a fiduciary is, I didn’t know much at first either, it is "someone who accepts the responsibility for taking care of the needs or property of another person for the benefit of that person", when the person is incapacitated, says the brochure I got from the Arizona Fiduciaries Association, Inc. For a fee they serve by court appointment as conservators, guardians, trustees, agents under powers of attorney, social security payee representatives, and are certified by the Arizona Supreme Court and governed by state law. They are not caregivers (would not provide personal care services such as dressing and bathing, etc.). In our case they would find someone to come into our house and live with Chris. Before allowing the person to take care of her, the fiduciaries would do an extensive background check, and then send them to Creative Networks, where a state agency would pay for the caregiver. The fiduciaries would come to the house either once a week or every two weeks to be sure all is well. It seems so impersonal, but I know things will be done on the up and up and to be honest I don’t have any other choices.


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