A F a T H E R ' S J O U R N E Y T O D E F I N E H O P E

HOPE IS A FOUR- LETTER WORD

A F A T H E R ' S J O U R N E Y T O D E F I N E H O P E

Foreword

You are about to look inside the lives of a family which was gifted with realities and challenges which no one would choose. You will learn how, first, Roger and Allison Richey, and then, their children Emily and Ian responded to the 24/7 reality of living life with their firstborn, Casey, and you will see that they chose to live life in the face of constant demands and unanswerable questions. That life would strengthen an already strong marriage, call upon their best gifts, expose their individual limits, challenge a deeply-held faith, shape the very contours of their heart, and enable them to find hope in what many would consider to be a hopeless situation.

Your storyteller writes with unfiltered honesty, incisive insight, and deep compassion. You will find no sanitized story here. You will quickly realize that you need not offer easy answers, stock Bible verses, vague theology, or cheery sentiments. You will be challenged to face, in the words of the author, the “Caseys” in your life with equal courage and honesty. If you, too, are faced with profound challenges, you will be inspired to allow hope to be born out of the travails of your life’s circumstances.

I have been witness to the story told in this book, and I can attest to both the struggles and victories Roger and Allison have experienced. I encourage you to read this book with patience. Do not rush past the struggle to get to the victory. Carefully consider the struggles, the doubts. Imagine yourself stepping into the story and sharing their lives. Allow it to bring forth greater compassion for people who face seemingly impossible demands. When Jesus’ disciples asked him to teach them to pray, he taught them, in part, to ask for daily bread. The storyline which lies beneath the surface is one of a remarkable family which found the sustenance of soul at each step, enabling them to transform a story of disappointment and despair into a story of hope.

I am honored to call the Richeys my friends and to introduce this remarkable story.

Jim Shepherd Pastor Sulphur United Methodist Church Sulphur, Oklahoma Introduction

At 54 years of age I have lived half of my life as Casey’s dad. Casey is trapped by severe mental and physical developmental delays and functions on the level of a three-year-old. Obviously, this is not the life I had hoped for – for me, my family, or my daughter. Even though it doesn’t define me, it has marked me.

Try as I may, I am unable to wash this mark from who I am. It has shaped me.

I am not saying it has shaped me into anything better or special but I cannot deny it has pushed me into the person I am. Perhaps it has magnified both my strengths and weaknesses and brought them to the forefront.

I am blessed to have a good friend who isn’t hesitant to speak truths to me. He challenged me to choose a path and follow it. The following pages share my journey from hope to hopelessness and to a new definition of what hope currently means to me.

As I started laying the groundwork for this project I did some online research and I asked a few people how they define hope. I also asked them how it impacts their journey. Hope can be defined as a feeling of expectation and a desire to want certain things to happen. It can also be described as an optimistic attitude of mind that is based on an expectation of positive outcomes related to events and circumstances in our life. There is an element of uncertainty in hope where we must acknowledge that some things that happen on our journey are out of our control. The word hope as used in the Christian faith moves hope from a feeling of unsure optimism to a trust in a strong and confident expectation. Someone else described it to me as an ability to see things as they could be and not as they are. As simple as it sounds, for most of my journey with Casey, this ability to see has been clouded.

It is my hope that by sharing this story you may be able to picture things as they could be as we all travel this world with our “Caseys.” Chapter 1

Inheritance – I Didn’t Ask for This

Casey was blessed with two incredible siblings. Patient, kind, and caring, they have chosen to love Casey and watch over and protect her. Trust me, it is a choice at times as Casey has her moments that make it uncomfortable and frustrating. I know having a disabled sister has impacted them. Some good and some bad. That is just how it is.

Emily helped push Casey along, and I am confident Emily sped up her development in crawling and walking. Emily is one of the most loyal, thoughtful people I know and has never shied away from her sister. Even through the awkward Christmas pictures and a time where Casey would bite her in the back seat, she has always been a blessing when she could have walked away. Casey loves her sister.

At first, Casey was a little unsure of Ian. He was loud, boisterous, and a general irritant. Originally, Casey avoided him. As he got older, she began to warm to his huge heart and laughter. He would casually introduce her to his buddies as “That’s my sister Casey, she has special needs”. Now, 17 years later, every morning Casey asks, “Where’s Ian?” Casey loves her brother.

Chapter 1

A few years ago, I started blogging to share some of our life with Casey and some of my thoughts in general. Below is a blog from early last year as I began to peel back a few of the layers and share my thoughts, dreams, and fears with others. As difficult as it is to admit, regarding a special needs child, there are worse things than a parent outliving a child. For half of my life and nearly three decades of marriage, I have walked with Casey, but her loving brother and sister have walked with her their entire lives.

Wikipedia defines inheritance as the practice of passing on property, titles, debts, rights, and obligations upon the death of an individual. Fox Business

News created a reality show titled Strange Inheritance. It shares stories of families who have been given unique, bizarre, and sometimes very valuable treasures. How the families accept these assets and the plans to properly value and determine the best course of action is told in each episode. Most of us with children, close family, and friends want to be able to leave something valuable to those who are here after our journey ends. This is not limited to cash, houses, or monetarily valuable assets, but it also includes sentimental family heirlooms such as a Bible, pocket knife, old letters/cards, and any other items which bring us a sense of peace and reflection. The last thing most of us want to leave behind is a debt or asset that is a burden. We do not want to leave behind a headache for which no one asked.

Chapter 1

After an extremely long day at work, it was the dark of night as I headed south.

As I was cruising along listening to Classic Rewind on XM, it hit me that I had no idea of how far I had driven as I pulled into the driveway. I had traveled a little over eight miles and do not remember any of it. There is a term called road blind, which defines this phenomenon. It is driving on automatic or inattentive to your surroundings. Usually this occurs on longer trips, but it can also manifest in the monotonous routine of our daily route. You lose focus of what passes by be it ugly, horrific, heartbreaking, beautiful, inspirational, or uplifting. You become blind to the broken people, homes, communities, and dreams. You miss the magnificence of the Creator’s imagination. Everything looks the same – same chain restaurants, retail, churches, and shopping centers are identical in each town. You are in a trance of being unaware to the views through the side windows as you press on to your destination.

As much as we might try to deny it for far too many of us our lives have become comparable to the road blindness that afflicts us. Even though our social media presence might try to reflect a life of fun, success, wisdom, political, and sports acumen, we are, in all honesty, just getting from Point A to

Point B the best we know how. Numb to the view that surrounds us, we are afraid to take our eyes off the road.

Chapter 1

The families of those who have been given the responsibility to care for the mentally disabled are very familiar with road blindness, or, in my case, the lack thereof. Some families of the disabled can follow the GPS and navigate the safest and quickest routes. They are able to enjoy both the ride and the view.

Not so much with me. I’m struggling like crazy to keep it between the lines while viewing every hideous storm ravaged sight out the driver’s side. Once I am nauseated by the destruction, I glance over to the passenger side to see the breathtaking view of indescribable beauty. Then it strikes me if I do not get my eyes back on the road, I am heading straight over the cliff. I grab the steering wheel and fight to get my ride back on the road.

Tomorrow morning, Allison and I get in our “special” ride and go visit with an attorney. It is another road with no map. We will wheel Casey into a stranger’s office and discuss what to do with her if she outlives the two of us. The cold stark reality of life will once again strike us in the depths of our hearts. The ugliness of fears you never think about, you keep them locked in the dark corners of your mind. What will happen to your baby who is unable to take care of herself, unable to communicate what is happening in her life, and incapable of sharing if she is being abused – things parents should never have to discuss. We will quietly get in our car and drive to lunch somewhere.

Allison looking out the passenger side with tears in her eyes while taking in the beautiful view. Me, biting my lip and chewing on the nail on my nubby finger,

Chapter 1 looking at the devastation. Casey just wanting nachos and a Diet Coke. At some point, we will take a deep breath and do our best to do our best. We always do.

This weekend will be a sleepless one for me as I will struggle with both my faith and lack of it. I will let God know this sucks, and I am pissed. As much as I might search the scriptures this weekend, I will find no opiate to numb what I am feeling. He will patiently let me vent and still decide to love me anyway. He always does.

We will at some point sit down with Emily and Ian and let them know the plan.

As I have said on many occasions, Casey could not have been blessed with a more loving and caring brother and sister. Even with that fact established,

Casey is very trying at times. Just this last week, Ian was chauffeuring Allison and Casey and had to put up with another of her melt downs. As they pulled into the garage, Ian stated he needed some Casey free time – I totally understand and appreciate his honesty.

At some point, our earthly travels will come to an end. It is our hope and desire to be able to leave our children with an inheritance that will enhance their life and, hopefully, that of my grandchildren someday. I also trust they can take

Chapter 1 some of our “heirlooms” and find comfort and memories of better days. As I have expressed, it is also my desire that Casey is called to the presence of the

Good Shepherd and is waiting for both her resurrection body and her parents to get there. While I deeply love all my kids, the thought of passing on our most valuable and most burdensome asset to their care is agonizing. I do not want them to be faced with that responsibility – they never asked for it. (Richey,

2016)

Holding Back the Years

Chance for me to escape from all I know

Holding back the tears

There’s nothing here has grown

I’ve wasted all my tears

Wasted all those years

Nothing had the chance to be good

Nothing ever could, yeah

I’ll keep holding on (Simply Red, 1985)

Chapter 2

The Starting Point

“Never deprive someone of hope – it may be all they have.” H. Jackson Brown, Jr.

“When you hold your baby in your arms for the first time, and you think of all the things you can say and to do to influence him, it’s a tremendous responsibility. What you do with him can influence not only him, but everyone he meets not for a day or a month or a year but for time and eternity.” Rose Kennedy

It was November 21, 1990. I was working a half day at Golf USA, so I could get to Mercy Hospital to experience the birth of my first child, a daughter. Even though we had only been married for 18 months, it was apparent who oversaw the schedule and planning. Our calendar, always written in pencil, showed C- section – Casey Kristine at 3:30 PM. Although our life planner was detailed, punctuality was not one of her strengths. I thought about erasing the time and making it 3:00 PM to ensure the mother to be arrived on time, but decided against it. I showed up at the appointed time and did what all first-time dads do - followed instructions.

As we made our way back to the OR, I felt at peace with what was getting ready to transpire. Except for Allison’s infatuation with Chili’s fajitas, she had a healthy pregnancy. Ultrasounds showed Casey was breach late in the pregnancy. We were hoping she would “flip” in the womb, but that never

Chapter 2 happened. Scheduled C-sections are not that unusual, so we prepared the best we could for the surgical birth of our first child. I was ready to get this show on the road and hold my baby girl.

The surgery went well. I sat near Allison and was fascinated by the entire process. The sterile field, the metal instruments, and the number of people in the room. The doctor asked me if I wanted to watch. I reluctantly stood up and chanced a glimpse over the drape. I quickly determined it was best for everyone, if I stayed seated and concentrated on my wife. At 3:38 PM, Casey entered this world as a blue bundle of non-energy. There was no loud screaming, no tears, just something that resembled an offspring of Mr. Freeze being whisked away to warm up. The OR staff finished up with Allison and took her to the room so she could rest. My first born was wrapped up like a burrito and put under a warmer. It was like waiting on my order from Taco

Bell.

Outside of the nursery, the seeds of grandparent spoiling had been planted.

Casey was the first granddaughter on Allison’s side and the first grandchild on my side. To say the grandparents were a little over the top would be an understatement. We all stared through the glass waiting to hold this special baby – blissfully ignorant that “special” would be a lifelong adjective. We all

Chapter 2 waited patiently not realizing that would be the first lesson in our journey with

Casey – patience.

Eventually, Casey warmed to serving temperature and was taken to the anxious and loving arms of her mother. As all mothers do, Allison unwrapped our little burrito and began the inspection. There were some anomalies with the toes on her left foot and a fat roll on her neck. I figured between being scrunched up the wrong way and having some of my genetics, the fat roll could be easily explained. Allison shared her concerns with the pediatrician who assured us our daughter was perfectly healthy. With that, we prepared to leave the hospital and celebrate a very special Thanksgiving.

Once we were home, I was shocked at how easy this new parent thing was.

Our friends and family members who had traveled this new baby road, prepared us for late nights, little sleep, and lots of crying. All Casey wanted was to be snuggled and sleep. Eating was not high on her list, but when we woke her and worked at it, she would eventually eat. While I may not be the brightest bulb in the lamp, I knew the feeding was an issue. I was not overly concerned about this because I had confidence in my intelligent and driven wife. She would passionately attack this situation and fix it. As the days and weeks progressed, both mom and daughter figured out some things. They both still slept a lot, but Casey was eating better.

Chapter 2

As Allison dressed Casey in another outfit that did not look familiar in preparation for a two- month checkup, I was proud of the progress our family had made. I was totally clueless to what babies should be doing but everything seemed to be “normal”. Eating, sleeping, and pooping seemed to be the norm, and all of those were being covered. During the appointment, the doctor mentioned some stuff way over my level of understanding. There were a few milestones Casey had yet to master and I gathered he was concerned about her vision, but in my mind, it was nothing a pair of glasses could not correct.

Allison, on the other hand, sensed something was not right and began researching.

My wife is a doer and a fixer, she doesn’t sit around and wait for things to happen. True to form, she immediately turned her concern into action and began making phone calls. Within days she found a pediatric ophthalmologist and scheduled an appointment that would change our lives. If I remember correctly, Casey even had to get a new outfit for the occasion.

It was my prayer that with the help of some glasses our little girl would start to hit some milestones. Milestones that would lead to her leaving her mark and impacting others. Hope seemed easy at the starting point…

Chapter 3

First Steps in the Dark

“Faith is taking the first step even when you don’t see the staircase.” Dr. Martin Luther King Jr

“In reality, hope is the worst of all evils, because it prolongs mans’ torments.” Friedrich Nietchze

The first trip our new family took was about five weeks after Casey’s birth. We loaded up the sedan that we had recently traded for to accommodate a car seat, and headed to Albany, Georgia. We were taking a road trip to visit

Allison’s sister and brother in law, Aunt Leslie and Uncle Jeff. Except for spilling an entire bottle of formula on Casey in the dark of night in Alabama, we had an uneventful trip. Our first family road trip was fun and we had a great time catching up with family.

Because of our busy schedules, it was a short trip. I still remember a grueling,

16-hour drive back to the 405 area code. Allison was beginning her final semester of nursing school, I had to get back to my job, and Casey had a doctor’s appointment. Our daily schedules were demanding but we had family, friends, and each other. We were enjoying our first steps on the journey with our family of three. The three of us were adjusting quite well to our new normal.

Chapter 3

Even though I physically attended the ophthalmologist visit, I am not sure I was present. Being a young, new parent is difficult. That, combined with the uneasiness stirring inside knowing something was not quite “right” had me going through the motions without truly experiencing them. As I stared at my baby girl being examined by a very compassionate doctor, my mind wandered.

What is he going to tell us? Will glasses take care of it? Will this require surgery?

How are we going to pay for this? Is this something she will outgrow? Of course,

I did not realize it at the time, but these questions were the beginning of a search for answers that has lasted more than two decades.

Before I knew it, the first round of numerous tests and visits to specialists was over. We had a prescription for a pair of tiny, pink, round glasses with rubber ear pieces. (Fortunately, we had many outfits that matched, so I dodged any additional clothing purchases.) I am confident the pediatric ophthalmologist spoke to us about Casey being developmentally delayed but I suppose I did not want to hear this; I really do not remember that conversation. I do remember thinking that I should be strong for Allison so I pushed my doubts and fears to the deepest region of my brain. Maybe if I avoided those thoughts, it would help me deny the inevitable.

From the beginning of our relationship, Allison and I had deep discussions. We talked about things that excited us and scared us, we also listened to one

Chapter 3 another. While I do not remember specific conversations from those early days,

I am sure we discussed how having a child with special needs would impact our lives. I clearly remember uttering the cliché, “It is in God’s hands.” That seemed like the appropriate response of a strong, Christian husband; however,

I don’t think at that time, I truly believed God’s hands were protecting my new family.

The summer before Casey was born we transitioned from renting a duplex in a college town while Allison finished nursing school to being home owners. We chose to purchase our first home in the town in which we were both raised, the town where our parents lived, the town we would grow to appreciate even more in the coming years. Although we both had a 30-minute commute, it was well worth it to live close to grandmothers who willingly helped us with Casey.

Because of this move, we ended up back at my childhood church. We reconnected with friends from my youth while also developing new relationships. In many ways, even though we had no idea at the time, we could not have been in a better place. I think Dorothy said it best, “There is no place like home.”

During this season of our lives, we were quite clueless. Casey’s only diagnoses to date involved her vision and the ambiguous phrase “developmentally delayed.” This was unfolding before personal computers and internet

Chapter 3 connections were in every home. Even if we had access to the World Wide Web, we would not have known what to type in the search engine. We had absolutely no idea what to expect and were quite unprepared.

Obviously when you are sitting down with your fiancé or wife you have these grandiose ideas and plans that include careers, houses, families, trips, etc.

Never during these times of sharing do you say – Hey, you know what would be cool? What if we had a kid like Corky from Life Goes On? That looks like it would be fun. Those types of things are never discussed. We were focused on our lives and learning more about each other. It was not in a selfish way, but in the way that all young newlyweds are planning a life together and trying to figure out how all the puzzle pieces fit. Having a developmentally delayed child was never in the roadmap on our trip together.

As we began following the uncharted path in front of us, there were times I was hoping to awaken from some kind of horrific nightmare. At some point, you realize that is not going to happen so you take the first step. You learn you must get busy living or get busy dying. We were young, we were newlyweds, we had a new baby, and we both had promising careers ahead of us. We determined that we were not going to let this setback define us.

Chapter 3

We learned to laugh (the best medicine) at life. That is not to say many tears have not been shed, but laughter permeates our household much more than despair. Of course, if you are Allison and have been blessed to be married to the comedic genius that is Roger, it is only natural. We continued the paths that we had planned for our early years. Allison finished nursing school, we both had jobs, and we volunteered at our church. We also enjoyed socializing with friends and family and participating in recreational volleyball and softball leagues. (Grandma Letha severely reprimanded us in 1991 for letting her

“sweet” granddaughter get sunburned at one of our softball Saturdays.) We were no different in that aspect than “normal” families. The big difference was we had a curly haired baby (thanks to Nestles, the hair product Allison applied religiously to Casey’s hair to enhance the curls) with little glasses and a vast wardrobe. Our lives were busy and full. One plus to living such a busy life was it did not allow our minds to travel to the dark places on the road map.

Although our family calendar, written carefully in pencil, was full, it was becoming painfully obvious Casey was falling further behind. Her pediatrician began referring to her delays as “global.” Normal milestones were not even imaginable at the time. As much as we would try to deny and imagine she was

“catching up” we knew that was not the truth. One of the things we promised ourselves in our discussions on life is to be truthful and at times brutally

Chapter 3 honest regarding our shared life together. So here we were - two take charge people sitting around waiting for something that would never happen.

Even though Allison and I are the exact opposites, we share a drive to get things done and do not typically waste time on self-pity. In very different ways, neither of us are uncomfortable being the center of attention. This trait would serve our family well in the days ahead. Allison with her extroverted, gregarious, creative, passionate, and big-hearted emotions for all to see can light up a room and connect intimately with those in her path. These connections and subsequent relationships have been very beneficial in our family’s journey. I am always amazed and in awe of those she has touched and known on the way. A natural empathetic leader, she has a way to get people pulling in the same direction. Her stubbornness (she prefers “determination”) has impacted her relationships in positive ways. I am more of an introvert who does not mind the spot light. I know it sounds goofy but have been told many times I am – I’m okay with that description. I am very cynical, sarcastic, and supposedly forthright, and I am always willing to push the envelope. Allison says I am just dumb enough to say things others are thinking but have a better filter. Even though I am very much like Spock on the emotion side, I possess a soft spot for certain people. Some are just stupid and selfish – sorry, no soft spot for that category. As a Richey, I am very overconfident in my abilities. I always wanted the ball, whether it was on the basketball court, golf course,

Chapter 3 pitching on the softball diamond, or calling the shots on a business decision. I always wanted a hand in the outcome. At least that way I could have some influence over the end result and did not have to depend on anyone else’s effort or performance. So you had two “get it done” people in a situation that could not make it better. More than a little frustrating to the both of us as we felt absolutely powerless and at times hopeless about our future.

It was during this time I first began to question God. Maybe someone much stronger would accept it as God’s plan for something better, but I was not buying it. Even though I had done some things I am not so proud of, I had never committed a really “bad” sin. If the church doors were open, we were there. We were teaching, studying, and giving our money. This was not part of the deal. Where was that whole blessing thing we were promised? I was raised in a fundamental Baptist church and was very familiar with the scripture in

Matthew that describes rain falling on the just and unjust. I had also been taught that His grace is sufficient. Somehow, those Biblical truths failed to comfort me during this time. They sounded like cold, sterile words in a very dirty situation. Eventually, with some serious study, self-reflection, and the help of a friend, I would understand that the question Why me? should be replaced with Why not you? There is a certain harshness and closure to that answer that forces a person to respond.

Chapter 3

Once again, I am terrible with dates but somewhere in that first year we were given the instructions to have an MRI performed on Casey. At the time, I was totally clueless to why but was hoping it would provide us answers. I can remember being extremely anxious about this. In a rare show of public emotion, I remember going to the front of the church during “invitation” time and totally bawling like a baby. I am sure many of my childhood Sunday

School teachers in attendance that day were thinking, “It is about time that

Richey boy repented.” I was pleading to a God that was more Psalms 88 than

Psalms 23. His rod and staff were not comforting me, but His hiding his face from me and his wrath had swept over me. He was not paying attention to me or my prayers, things were getting worse and He did not care. I was going to take my little baby girl and put her in a tube and watch for the results. Would it show something fatal like a brain tumor or some other growth to explain what was going on? I felt totally broken and in despair. I wanted the ball to end the game, but it had been taken from me by Someone who would not even respond to my calls.

The results of the MRI showed no tumors or other growths that would explain the delays. While I was thankful, I was still left with an empty feeling. What was going on? Could anyone tell me what we could do to make this better?

What is my daughter’s life expectancy? Will she ever be able to walk, talk, play, read, or do anything but just lie there? At some point right after that, I

Chapter 3 concluded that no matter what the answers to these questions, you have both a heartbroken wife and a broken daughter who need you to step up. I can remember grabbing a pack of Levi Garrett and heading to the golf course for some serious reflecting and internal pep talk. The golf course was my sanctuary growing up, so I needed to return to get my mind, body, and soul ready for the adventure ahead. At this point, it was no longer about me. It appeared He no longer was active, so I needed to do my best to support Allison as I knew she would be doing most of the heavy lifting. It was time for actions for the responsibilities given to me.

As we planned for Casey’s first birthday party, we did the best we could to make it a festive atmosphere. This was the first of Allison’s now famous parties, complete with friends, family and decorations. This one was done on a very limited budget however, as we were struggling financially because our health insurer failed to cover some of Casey’s and Allison’s hospital stay. We were making monthly payments to the hospital and to several physicians.

Casey had no muscle tone and would literally slide down or fall over if placed in a high chair as she was unable to sit up. We ended up buying her a little basketball goal, and we would hold her up and press the buttons and place the ball in the different holes for her. To say she was completely apathetic to this would be an understatement. I am fairly sure there were more outfits and shoes from both sets of grandparents. We let Casey play in the cake but she

Chapter 3 had no interest and did not even eat the cake from her hands. Not the most joyous of memories or times, but we celebrated the best we could considering the circumstances and were still very thankful for the support of family and new friends. Casey’s second year of life was about to begin. Besides the exciting fact that Casey was going to become a big sister, we were very uncertain what 1992 would bring. It was time to “get busy living” and step out even if we did not see the staircase.

At this point, hope was just a word I heard and was supposed to believe in. It was supposed to be part of my faith. Hope was just a four-letter word.

Chapter 4

Keep on Walking

“Life can only be understood backwards, but it must be lived forward.” Soren Kierkegaard

“The miserable have no other medicine, but only hope.” William Shakespeare

As much as I wanted to wake up from this bad dream, our family kept moving along this path. I had started a job with a franchise operation that provided me incredible experience and opportunities for career growth. Allison had completed her nursing degree and began working at a hospital. Before we knew it, we had become a family of four. Just 17 months after Casey was born, we welcomed Emily Brook into our lives. It crossed our minds that Emily could be born with issues like Casey’s. Those fears were short-lived however as we watched in awe as Emily met milestone after milestone. She was healthy, beautiful, and head strong. Our sense of awe turned to harsh reality when Emily began to surpass her older sister. With a nine-month who was walking and a 26-month old who wasn’t, our starter home was getting a little crowded.

While still in our first home, Allison began tirelessly looking for specialists, therapists, and really, really, large hair bows (for two.) She was determined to find a winning combination of speech, physical, and occupational therapists to guide Casey through the latest and greatest techniques. During this time, Allison was very determined on her quest to find a diagnosis for Casey. Allison’s days off work were spent caring for the girls and taking them to appointments. She was a natural at this and still enjoyed these early years as a new mother. I, on the other hand, was content to come home from work, play on the floor with Emily and then let Casey sleep on my stomach while I watched a ballgame.

Chapter 4

We were fortunate to have access to a wonderful, state sponsored, early intervention program. Thanks to a dear friend, Casey was referred for an evaluation and was receiving services in our home by her first birthday. The therapists helped lay the groundwork for improved muscle control which led to her learning to roll – which was her preferred means of transportation – for many months! Casey eventually learned to crawl and at the age of 30 months began walking.

Although we made the decision to live in the community in which Allison and I were raised, we did not understand the importance of this choice until much later. The main reason people move to our community is for the school system. At the beginning of the school year in which Casey was to turn three, we entrusted the wonderful employees of the Moore Public Schools with one of our most prized possessions. Each day, Allison would take our daughter, who was barely walking, to an elementary school that was integrated with children of all abilities. It was at this school, that she began to thrive physically and socially. Casey loved going to school and Allison loved buying her new school clothes. 20 years later, at her high school graduation party, Casey’s first two teachers were in attendance to help us celebrate what we all had accomplished.

I cannot begin to tell you how many appointments Allison dragged the girls to so Casey could be poked and prodded in our quest for a diagnosis. I did my best to attend when my schedule would allow. Allison has since told me that much of that time was a distraction for her from her reality. She is a fixer, and sitting back and waiting is not in her nature. It gave her a sense of purpose in her search for a diagnosis that went beyond “global developmental delay”.

I want to say up front, before I get too deep into my story that Allison and I did not let Casey’s diagnosis define our lives. We were the parents of a severely

Chapter 4 disabled child and her perfectly “normal” sister. We were not the parents of a defeated family that would hide behind our obvious setback. We intentionally chose to live life to the fullest within the confines of our circumstance. We went on vacations, entertained family and friends, attended church, little league, and gymnastics. In that respect, we were just like every other family we knew. Both Allison and I continued to find time to pursue our own interests. I still enjoyed playing golf, and Allison enjoyed buying a lot of decorative ducks for our house. Along the way, Casey was getting to meet people and experience life.

Casey was a natural ice breaker, if you could get past the stares. She was gifted with the ability to connect with people at an early age. Although she was skittish to loud noises in her early years, and her vision is poor, she has always had the ability to take in her surroundings. In that way, I believe she is quite gifted. Casey wants to know and interact with the people in her surroundings.

One more, quick detour – when you get married and repeat the “for better or for worse vows”, you never really consider the worse to happen so early in your marriage. Statistics show that 70% - 80% of all marriages where children have special needs end in divorce. (I am quite positive leaving me for someone better would be impossible for Allison.) We were busy living life, sharing the ups and downs, and celebrating falling deeper in love. I cannot think of anyone else who would be a better partner. My wife brought many talents into our union, but cooking was not one of them. We have enjoyed crunchy rice in stuffed green peppers, cheap box spaghetti, bad pan-fried steaks, and other numerous delicacies. Crazy work schedules forced both of us to learn our way around the kitchen, wash clothes, bathe babies, and clean the house. We were equals with both of us pulling on the rope in the same direction. More than once, we would call each other and say maybe you should swing by and pick up something to

Chapter 4 eat. We have both ruined clothing and made bigger messes than what we were supposed to be cleaning. We have laughed, cried, and discussed but I can only recall two real “fights” in our 28 years of marriage. We are each other’s rocks. We are brutally honest and open with each other. We have met each other in the darkest of places and patiently waited. I am a much better person because of the woman I am married to – she is the heart of our family.

Through the entire schedule juggling, grandparents helping with the girls, two busy jobs and hectic lifestyles, we thought it would be a great idea to move to a little larger house. We were out of room for all the ducks, and Emily had searched every square inch of our house. Casey, on the other hand, had yet to put one foot in front of the other or spoken a word. We thought maybe a change of address would help. We found a larger house in an older, established neighborhood and began the process of turning it into a home. We painted, wall papered (I didn’t), installed new flooring and windows, and transformed that house the best we could within our budget.

One of the first parties we threw at this house was a birthday party for Emily. Unfortunately, the party was cut short when Grandma Letha accidentally swallowed a decorative foil star that was meant to enhance the look of the cake, but was not to be consumed. Besides this minor setback, we were really enjoying our new home. There was a wonderful neighborhood school across the street for Emily and we could not wait until she was old enough to attend. The best part of our new neighborhood revolved around the neighbors. To this day, Emily’s closest friends are those she met in elementary school. Two doors down from us lived an incredible family. Larry was a firefighter and Kathleen was a former special education teacher who was now a stay at home mom. This family has been our saving grace for more than 20 years. Although we have moved out of the neighborhood, they continue to open their hearts and

Chapter 4 home to Casey. Every Monday, Casey goes to their home for the entire day. She loves teasing with “Gary” whose real name is “Larry”, she enjoys Kathleen’s culinary skills, and spends a fair amount of time terrorizing Midnight, the family cat.

As excited as I was for our new house and the groove we seemed to be settling into, there was a sense of hopelessness that troubled my soul. Casey’s progressions had plateaued, and it was obvious she would struggle with fine motor and verbal skills, as well as mobility. Additionally, she has some physical anomalies that would make toilet training impossible. (This was discovered by a specialist at one of those early appointments.) She had therapy to learn how to chew, but even with the extra help, Casey struggled with choking. Her diet was, and still is, limited to soft foods or very crunchy foods such as pretzels and tacos. She did not possess the strength and stamina to safely eat proteins that required lots of chewing. Thanks to my dad, who paid dues to the Masonic Lodge, Casey was eligible to receive one-on-one speech therapy at a Masonic Lodge 45 minutes from our house. Granddad often made the trip with Allison and the girls. He was always good for lunch and long stories to help pass the time. This additional therapy helped Casey flourish even more, she was even featured in an article because she had connected with the therapist in ways only Casey can.

The issues Casey and my family would face flooded me with despair. It was the darkest time in my life. I would do my best to not show any signs of weakness, so I could give Allison the support she needed. This time started my continued battle with insomnia. I can remember being broken and sobbing as I looked down the road that was ahead. Some of it was self-pity, some of it was grief, some of it was anger, some of it was fear, and most of it was directed at God. He and I have had a few discussions on the topic throughout the years –

Chapter 4 mainly one sided. This was not a nightly, weekly, or even monthly occurrence, but it happened on a few occasions.

After one of these “discussions,” I thought of a classic story from my childhood. It was Easter, and I am quite sure we attended a sunrise service because the best disciples would not sleep in on Easter Sunday. Following the 6:00 AM service, the Richey family was gathering to celebrate the Resurrection by eating pork and playing dominoes. I was seven years old and decided that I was not going to join in on the egg hunt because I was much too old for that. I did not care to expend any energy searching for the prize egg. My father, Deacon Ed, thought differently. I had a great argument and used it; however, the result was a spanking. After said spanking, I reluctantly and half-heartedly searched, and as luck or divine intervention would have it, I found the prize egg. My uncles thought the irony was hilarious and said next year they were spanking their kids for good luck. As strange as it sounds, my situation with Casey made me feel like that little boy who did not want to hunt eggs. I felt that my Heavenly Father had punished me and to make things worse there was not a prize egg to be found.

My faith was evaporating, and the thought of smiling and playing along at church was about the phoniest thing I could imagine. Selfishly, I was mad at God and what He had done to my daughter and my family. I knew I was far from perfect but did foolish sins from my youth cause this? If so, where was all this grace and mercy I had heard about my entire life? The thought of holding on to heaven as my hope really seemed far away and so distant that it held no special place in my life. How was I supposed to enjoy His creation of earth, water, sky, and family if I was chained to Casey and her continual needs?

Chapter 4

Hope was my only medicine but the bottle was empty.

Chapter 5

Life Goes On

“Strength does not come from winning; your struggles develop your strengths. When you go through hardships and decide not to surrender that is strength.” Gandhi

“We must accept finite disappointment, but never lose infinite hope.” Dr. Martin Luther King Jr

The year was 1969, and the location was the Sky Ranch Elementary school playground. After a traumatic start to first grade, where I lost the tip of my left ring finger in Mrs. Yates’ classroom door, I returned to academia - scarred both physically and emotionally. School was associated with pain and loss, and I really struggled to find my sweet spot for the remainder of my school career.

That spring, Sky Ranch Elementary hosted a reenactment of the Oklahoma

Land Run. I grudgingly dressed in my western wear and prepared to participate in this extravaganza.

For those unfamiliar with this historic event, the real Oklahoma Land Run was

April 22, 1889. There were unassigned and unoccupied public lands in

Oklahoma that were open for settlement due to the Indian Appropriations Acts of 1889. At high noon, approximately 50,000 people lined up to “stake their claim” of up to 160 acres.

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As the entire first grade class stood, flags in hand, anxiously awaiting the start,

I was planning my strategy. While most of my classmates were no doubt planning to stake claims on the land under the big slide, or near the swings, I had a different plan. As the gun sounded (most likely it was a teacher blowing a whistle), multitudes of six-year olds dressed in cheap cowboy hats, took off in all directions, screaming and pushing one another. I looked around at the starting line, and promptly planted my flag right where I stood. It looked like a pretty good place to settle. There was no need to exert any energy looking for greener pastures. I was just going to start enjoying my little plot of land.

More than 20 years later, I came to realize what I had first recognized during the Great Sky Ranch Land Run of 1969. Instead of spending all my energy chasing the next best thing, it was best to stake your claim and make your home where you were. Our family had settled into our new-to-us house and neighborhood. We had hit smooth waters and were enjoying the trip. I had continued to climb the ladder at work, and Allison had the opportunity to leave the hospital setting and become a school nurse. Emily started school almost directly across the street, and Casey started her career as an experienced

“short bus” rider. (One of the things she truly enjoyed during her school career.) We had quit chasing doctors and just tried to accept what came our way.

Chapter 5

Life continued to happen in our home. After several years of trying to have a third child, we experienced a miscarriage and thought our family was complete.

Luckily, God has a great sense of humor and timing. Almost ten years after

Casey was born, we gave birth to our third child and only son.

We survived the Y2K bug and 14 days into the new year, Ian Wesley made his arrival. He was (and remains) the baby on Allison’s side of the family and at that time, was the baby on my side of the family. He was content to be held

(which most likely explains why he didn’t walk until 14 months of age) and was blessed with an easygoing disposition and kind spirit. God’s plan is flawless and He weaves the fabrics of our lives together in ways we do not always see. I can certainly testify that the personalities he brought together in our household from the beginning, helped ease the impact of caring for Casey.

While Casey’s cognitive and physical abilities had peaked at the level of 2 ½ year old, her body kept growing. Although a little clumsy, Casey mastered walking on flat, even surfaces without difficulty, for which we were very grateful. However, as she continued to grow we realized life was going to become more physically challenging. She has a type of spina bifida that her neurologist told us may be the cause of her bladder and bowel issues.

Sourcing pull-ups for a growing child was just one the challenges we faced as

Casey grew. We also had to adjust and determine the best shower/bath

Chapter 5 strategy as it was becoming increasingly difficult for her to get in and out of the bath tub. Simple tasks like teeth brushing and taking medication became increasingly difficult and required planning and additional time. As our first daughter transitioned into adolescence I found myself participating in aspects of her care that I had never imagined.

As I have always said, being a caretaker to a disabled child makes you bitter or better. I realized early in the process that it is difficult to think highly of yourself and your accomplishments when you are forced into a life of service.

Of course, there have been times that I have questioned God. I sometimes wonder how much more does He want me to learn? What am I not getting?

Besides these brief lapses into self-pity, I can honestly say that Casey has made me a more empathetic person. She has forced me to look at people and circumstances in a much different light.

I believe all of us have a “Casey.” I am unable to hide mine, but I see far too many people hiding theirs. This forces people to carry the brokenness of a life they never imagined. The lessons I have learned can only be taught by a lifetime of experience caring for another person. I am confident that I have been blessed in understanding both the lows and highs of life that I would not have been open to if not for Casey. The Gospel of John, chapter 9, tells the story of Jesus healing a blind man by spitting in the dirt and rubbing the mud

Chapter 5 in the man’s eyes. The longer I lived with Casey, the more sense this scripture passage made to me; however, it didn’t mean I liked the mud.

During these short bus years, my spiritual journey was quite an adventure.

Our family has attended more churches than I would like to admit as we searched for a place for all five of us to fit. We have met some incredible people and friends along the way. Wherever we attended, Allison and I did our best to serve. We have taught Sunday School, volunteered in the nursery, hosted small groups, and helped friends celebrate weddings and births, and helped mourn deaths of loved ones. We have witnessed both the best and worst churches have to offer.

Somewhere during this time, I started my own reflection of what I believe and why, both of which differ greatly from the faith of my heritage. I had a burning desire to own my faith (or lack thereof). Gandhi said, “To believe in something and not to live it is dishonest.” At best, I was a Christian tourist – I had the t- shirts, bumper stickers, and map, but I was just visiting. Either I had to embrace what it means to be a follower of Christ’s teachings or quit being dishonest in my faith. This meant tackling the issue of hope – and why it seemed so far out of my reach.

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While I was unsettled in my spirit, the Richey family was still living the

American Dream. Allison and I were both juggling careers, and the kids were in school, participating in sports, and extracurricular activities. It was during this time of our lives that Allison hit her career stride. She completed her

Master’s degree and was promoted to campus director of our local technology center. She is a natural leader, genuinely cares for people, and led a strong team in a job she loved. My career had taken an interesting turn from being the CEO of a company to struggling to find a job after said company was sold.

At almost forty, I was fortunate to land a job. As a famous rapper says, “I started from the bottom” (again), but was blessed to excel in this new job.

We built a new house and enjoyed the extra space it provided. I joined a local country club and played a round of golf when time allowed. Our children had nice clothes, spending money, and we enjoyed family vacations. Life was good and much better than we had ever expected.

Allison and I were proud parents. We enjoyed watching and supporting Emily and Ian as they pursued their own paths and grew in their own interests.

Emily was very involved in student government, and, well, Ian was the class clown. They both made good grades, but I was much more encouraged by the type of people they were becoming. Compassionate people who had big hearts for the underdogs, they were concerned about making life better for others. I

Chapter 5 don’t know which came first. Did God give them these traits because of their life circumstances or did God help them develop these traits because Casey was their sister? Either way, the result is the same. They both carry burdens that other young people do not, but it has definitely opened their hearts to others.

In her own way, Casey was also beginning to make a positive impact on her fellow students and made friends everywhere she went. John 9 was becoming even more clear to me as God was displaying His handiwork and plan for

Casey. He blessed her with the ability to make even the most hardened people smile or give her a hug. Casey truly sees the beauty in all of God’s people. She doesn’t see color, race, sexual orientation, sinner, saint, rich, poor – she just sees people and values them all. I used to be shocked at the number of people that would say hello to her in public, and I had no idea how they were connected. She was a social butterfly and school helped her live a full life. She used her gifts to make her world a better place which gave her a life of purpose, not just one of existence.

We have seen families like ours struggle with their child’s special education. I can say without a doubt, that we have nothing but deep gratitude and respect for all the educators and school employees who invested in Casey’s life for 20 years. From the administrators, to the classroom teachers, to the bus drivers,

Chapter 5 and the assistants, all of them shaped Casey’s world and gave her a safe place during these years. Again, we witnessed God’s handiwork as He once again placed the right people in our paths at the right time.

Allison and I supported the educational process and invested in resources to help her meet educational goals. We taped pictures of items all over the house to help her communicate more effectively. One year, we ordered buttons that allowed us to record simple phrases so Casey could just touch the button and have her needs met. Once Casey mastered communication and we mastered meeting her every need, school was more a place for her to mature and experience life. She “competed” in Special Olympics swimming and track and field (and was about as excited as I was to participate in The Great Sky Ranch

Land Run). We certainly did not realize it at the time, but these activities were a huge part of her life and would be greatly missed once she graduated from high school.

Even with the best of educational opportunities, in a district known for the way it delivers special education, it was obvious that Casey was not going to learn anything that would lead to post high school employment. The federal government requires special education students to have an individualized plan with goals and interventions for learning. Each year, Casey’s teachers helped us develop a plan and worked hard to help her meet the stated goals. I truly

Chapter 5 sometimes felt like these plans were an exercise in futility and felt bad for the time teachers spent writing them and the trees that were wasted in the process.

It was during these years that I had many important realizations regarding

Casey and her life. These insights helped me begin to imagine an earthly hope that previously seemed very distant. I could accept the reality of what would never be. I quit wasting time and energy chasing a change that was impossible.

I embraced where I was with Casey and began to live life to the fullest. Trying to change the past and longing for a future that never could be was no longer my concern. Much like the first grader, I staked out my place and started living.

I had not surrendered to my hardships, and I became stronger. I began to find an infinite hope while experiencing a lifetime of disappointment. Hope was transforming from a bad four-letter word to a four-letter word that was not bitter.

Chapter 6

Thanks for Joining the Party

“It is very easy to overestimate the importance of our own achievements in comparison to what we owe others.” Dietrich Bonhoeffer

“God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments – can see a possibility of hope.” Maya Angelou

I was blessed to come from families on both sides that were gifted with hospitality. Be it holidays or no specific reason, there was always a seat at the table for anyone visiting. These were and are very loud gatherings with much laughter, storytelling (many of them repeated), and an occasional debate. That is all I knew growing up. Luckily, Allison embraced this culture shock. She uses her big heart and creativity to make our home and over the top celebrations open to all.

Allison throws incredible parties and spares no time or expense when in hostess mode. She threw a beautiful “Tiffany’s” theme party for Emily’s 21st, a

“Case Spade” party (apparently that is a knock off on a trendy designer) for

Casey’s 25th, and a recent Sugar Bowl, NOLA-style party to support our

Oklahoma Sooners. She has hosted countless luaus, fiestas, and super hero celebrations as well. Her parties come complete with t-shirts, party pics, music, coordinating menu options, and enough food and drink for our entire county. We had 135 guests attend Casey’s graduation party. The dancing was

Chapter 6 epic (including my personal renditions of Gangnam style, the water sprinkler, and the Bernie). For about a year, we hosted the famous Richey Tuesday Night

Dinners where everyone had an open invitation. A typical Tuesday night would involve us cooking for 35-50 guests. We both enjoy life and sharing it with others. Casey loves “parties” and always wants to know “Who is coming over?”.

Allison and I have opened our homes for baby showers, wedding showers, other celebrations and the occasional funeral meal. A few young adults have lived with us during transition times when needing a place to stay. We have been blessed beyond measure and enjoy the opportunity to share life with others.

One thing that always strikes me when we have a party (besides the fact that my wife becomes a dictator) is how we are connected to the people. We have friends that Allison and I have met on our journey, friends of Emily and Ian, and people who have been impacted by Casey. To see the support and love showered on my family throughout our journey is both humbling and touching.

We have met so many incredible people I cannot name them all. There is one who is still very special to me. A young girl we met on one of our church stops.

Heather was Casey’s caretaker during the summers and our go-to babysitter.

She also watched Ian and was there for Emily if she needed anything. This

Chapter 6 young lady went on family trips and even attended a Richey Christmas get together for which she received hazard pay. She went on to earn her education degree and is now a special education teacher. Heather is now married and has a beautiful family of her own. I love her like a daughter and am proud to say that she was impacted by her time with Casey.

I am grateful to everyone who has taken pictures or videos on Casey’s Apple devices; given her a hug or touched her outstretched hand; said hello and carried on pointless, silly conversations with her. For those who have welcomed Casey into their homes and lives and who have attended the parties, please know you have impacted our journey. I cannot begin to explain the energy kindness provides to a weary traveler like myself and am in awe at the size of our circle of support.

I have no good answer as to why God gifted our family with Casey. This gift is a lot of work, worry, and weariness. Our lives would not be as rich without those to whom we owe so much – the ones who put rainbows in our sky after the dreariness of the storms. You have given us hope and love, another one of those four-letter words.

Chapter 7

No More Bus Stops

“Days drag on but the years fly by.” Unknown

“Hope is like the sun, which as we journey toward it, casts the shadow of our burden behind us.” Samuel Stiles

“Hope is being able to see that there is light despite all of the darkness.” Desmond Tutu

While many of my former teachers may have been surprised I graduated on time, Casey holds the Richey record for the number of years spent in the Moore

Public School district. In November of 2012, Casey Kristine Richey turned 22 and became a proud alumni of Southmoore High School’s graduating class.

She was eligible to participate in commencement activities with her class that numbered approximately 600; however, Allison and I decided to spare everyone the possibility of one of her infamous “melt downs” as patience is not one of

Casey’s virtues. Instead, her incredible teacher surprised all of us. She planned a graduation party at the high school on Casey’s last day. The party was complete with pictures, a video, and many of her former teachers. Casey walked into the room wearing a cap and gown to “Pomp and Circumstance.”

This image was one of the sweetest and saddest in our 22 years with Casey.

We were grateful for the genuine love extended to our daughter and family but fearful for what would come next.

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After expressing our gratitude and saying goodbyes, we loaded up Casey, her cards and gifts, and headed home. We were hosting our own graduation party,

Allison style, and had preparations to make. We had several hundred hog dogs to buy, tables to set up, a photo booth, and dance floor to create in our rather cramped back yard. Allison’s sisters, Robin and Leslie came to town to help with the preparations. The entire evening was memorable. More than 100 people helped us celebrate this milestone.

After the adrenaline of the celebration wore off, the reality of our new chapter began to be written. In the year leading up to Casey’s graduation, Allison and I prayerfully made the decision that one of us would retire and become a stay-at- home parent. My lack of fashion sense and inability to fix Casey’s hair really hurt my chances of becoming her full-time caregiver, but I lobbied hard for the position. I could never overcome those counterarguments however, so the decision was made for Allison to “retire” at the age of 43. Ian was getting ready to start junior high and had a busy schedule playing club basketball. I think he was excited that mom won the honor of staying home as I am prone to embarrass our children on occasion. After twenty-three years of marriage and juggling the schedules of two careers, we became the Cleavers with Roger playing the role of Ward, Allison as June (minus the pearls), Ian starring as the

Beaver and Casey morphing into a hybrid of Lumpy and Eddie Haskell. Emily

Chapter 7 would fill the role of Wally when she would swing by for visits since she was out of the house and beginning her adult journey.

Selfishly speaking, this throwback to black and white time was great for me.

My day-to-day caretaking had been greatly reduced. I no longer had to get up early to help with Casey’s morning hygiene and activities before waiting on the bus to arrive. I also avoided having to fight extra traffic and time picking up

Casey from the caretaker after work. Life was better than it had been for me in a long time.

For Allison, however, this next chapter was anything but better. My creative, social wife walked away from a position with approximately thirty direct reports and overseeing a large team, to taking care of Casey and managing our household. Quite honestly, the thought of overseeing Ian and me would be a complete downer to most. The feelings of isolation and despair began to impact the love of my life and the heart of our family. A driven goal-setter had seen the fuel that fed her soul was no longer available. She did her best by volunteering and offering assistance at church. She had a couple of contracts to write curriculum and teach nursing classes, which were bandages at best.

She was becoming more cynical than me and that was my best contribution to the team.

Chapter 7

As it turns out, Casey was also struggling as a high school graduate. The job market had seemed to dry up for someone whose only skills involved drinking

Diet Cokes, eating crunchy, salty snacks, offering hugs, and playing addictively on her iPhone. Come to think of it, she probably was not unlike many of her

“regular” fellow graduates. The lack of routine also had a negative impact on her behavior. Dad was not there in the mornings to wake her up and sing silly songs and mom really isn’t a morning person who enjoys “acting goofy” prior to

9:00 AM. Casey inherited her mother’s desire for social contact and the lack of interaction with the outside world was taking its toll. Ian was getting older and not around as much. Add to the equation the loss of both of her grandfathers during this transition time, and Casey’s world was changing and shrinking.

The sweet, cheerful girl that was so agreeable had begun exhibiting troubling behaviors. She would have full out fits and stubbornly sit down wherever she was (grocery store, parking lot, post office, etc.) when she was unhappy. We had to resort to transporting her by wheelchair if we were going anywhere in public. If we were out shopping and she didn’t get a Diet Coke at the register, she would throw herself on the floor and start wailing. She had the same reaction if she didn’t get a to-go drink at a restaurant. Casey was controlling her environment the only way she knew how. The hassle and headaches of rolling the diva around at times became too much. The wheelchair was heavy

Chapter 7 and cumbersome, so my busy, on the go wife, was opting to stay home more and more. Our world and way of life had become much smaller and isolated.

As with all parents of severely disabled children, our normal was much different than traditional. At a time when most parents start thinking about empty nests, we were finding creative ways to spend time together. Our true date nights for just the two of us were as rare as a Richey at a Weight

Watcher’s meeting. Recognizing that fact, we learned to maximize our time together. A date night might be an hour sitting on the couch together sharing our valley and mountaintop experiences. For that short time, there is open and honest communication where we purposely listen to one another. It could be sitting on the back patio uninterrupted for thirty minutes with a choice of beverage in hand just getting caught up, planning, venting, or sharing. We both cherish those times. These conversations have become the respite we need to recharge before plunging back into the daily grind of caring for an adult child who is completely dependent on us to meet her needs. A great Saturday morning for us is being able to take advantage of Ian being at home and sneaking off for a couple of hours for a breakfast, sans wheelchair, and a trip to Sam’s. Looking at us from the outside, it might occasionally appear that we are selfish with our time. We are, we value our time and must do what is best for our family, and more importantly for the two of us. I am biased but think that Allison and I have the greatest relationship and bond in the world. The

Chapter 7

“Footprints in the Sand” poem that many look for in Psalms is valid to me but in a much different context. I know there are times when we have pulled and carried the other during seasons of physical, emotional, and spiritual exhaustion. While caring for Casey has been and will continue to be tiresome, painful, and at times discouraging, I know that it has made my marriage and friendship with Allison much stronger. This is one of the unseen blessings that has enriched my earthly journey and for which I am so very thankful.

During one of our post-midnight date nights, I made the very straightforward statement that I could preach Casey’s funeral. Taken aback (and, honestly, what mom wouldn’t be?) Allison asked me to elaborate. She listened intently and simply said, “Babe, that’s not Casey’s funeral, that’s your story”. It is difficult to explain, but being Casey’s dad has impacted me in a way that made me question my faith and beliefs. The certainties drilled into me from my childhood had been replaced by doubts and more questions. These questions went to the darkness of life that most are afraid to let out. It was during this time of spiritual solitude and raw conversations with myself and my Creator that I felt a calling to share my journey. With help and encouragement, I stumbled through a small book, Broken Gift: A Father’s Lessons Learned. It was more therapeutic to me than it was a page-turner. I had begun a new journey of faith that resembled a mid-life faith crisis. That book, which I could have used as a eulogy, lifted the burden of many empty years of being a

Chapter 7

Christian and the work I had associated with it. I was not sure where I was going, but I felt hope for the first time in a long time in my spiritual journey.

While never one to be timid in Sunday school or small group settings, I have always had many questions and thoughts that I did keep to myself. Allison did not always agree or appreciate that some filter is better than no filter. I cannot count the number of times she gave me the “you promised you would keep your fat mouth shut lecture” from the church parking lot all the way home.

Much to Allison’s dismay, my newfound hope eliminated the shackles of guilt I carried for years. I felt free to not only ponder but verbalize the questions that troubled my soul: Why do we pray for healing for individuals with cancer, heart disease, and those recovering from surgery, but never pray for deliverance and restorative healing to those afflicted with retardation? Could not the God who hung the stars fix a broken baby girl? If I brought that question up in Sunday

School, would people try to use scriptures to justify an answer for which there is no good earthly answer? How could I bring up the fact that while I hope and pray by God’s mercy and grace I make it to heaven that I find part of it not so exciting? While I totally understand God is worthy of our eternal praise and worship, I can barely handle twenty minutes of praise and worship once a week.

Are we going to be singing old hymns, Psalms, modern praise and worship, blue grass, or gospel in heaven? Is it wrong to love what you can touch and feel on earth and be less than excited about death and the afterlife? How do Christians

Chapter 7 reconcile what appears to be injustice from a loving God? Would He eternally condemn a young girl who lives in a third world country for not “professing her faith” even though she has never heard the name of Jesus but is overwhelmed by creation and cries out to the Creator for comfort? Is the upper middle class

American girl who professes her faith by lifting her hands in praise on Sundays while bullying less fortunate individuals not in her social group more likely to spend her eternity with Christ? Which one is God’s child, the one who claims

Jesus but lives like a Pharisee or the one who has never heard His name, but feels a calling from the stars? These are just a few of the thoughts I have in the dark of night, the mysteries and questions that somehow make my faith stronger even though there are no simple answers.

While I was enjoying both the freedom of less Casey caretaking time and a fresh approach to being a follower, Allison continued to experience the chains of a much smaller world. I was marching toward a light called hope and casting a shadow on the burdens I was leaving behind. Allison was watching her days drag on while her months quickly turned to years – hope had now become her bitter four-letter word.

Chapter 8

Connected

“Some see a hopeless end, while others see an endless hope.” Unknown

“It is the around the corner brand of hope that prompts people to action, while the distant hope acts as an opiate.” Eric Hoffer

While at times it may feel like you are living out a sentence, the clock keeps ticking, and the days keep getting checked off the calendar. The invisible bars had been placed on our home. At the same time the cold feeling of isolation was settling in on our shrinking physical world, we were welcomed into the expansive universe of social media. No longer hindered by Casey’s physical and emotional limitations, we could now “socialize” with several family members and friends.

Through one of these connections I have been able to establish a great friendship and gain a mentor in my spiritual journey. One of the few people who can match me in sarcasm and insomnia, he has been patient in answering many of my questions, most of them well past the midnight hour. He has given me recommendations for books, music, and documentaries that have all challenged and helped shape me. One of these books aptly titled, Surprised by

Hope, introduced me to the teaching of resurrection - life after life after death.

In a nutshell, it is the promise of a resurrected body like Jesus after He

Chapter 8 conquered the grave. It goes hand in hand with both a new heaven and a new earth. It helps explain to me how the meek will eventually inherit the earth. I believe both the soul and body are connected for eternity. We were created so that neither the soul nor body could exist without the other. This provides me with a hope beyond just my soul “floating” around in heaven. I will share more on this in my final chapter and why it is so important to me – the father of a broken earthly vessel.

Feeling a freedom in my spirit and a calling to share the raw truths that both my family and I experience with Casey, I began to blog. The connections we had made on Facebook provided me an audience to those brave enough to open the link. As in real life, Allison’s friend ratio to mine is easily 100 to 1, so I have to buy access when she shares my posts. I have truly been humbled by the feedback from our friends. We probably share too much of our give and take on Facebook, yes, that is how we truly are, and yes, some of what I want to post is edited.

While our Facebook world was expanding, our real world continued to shrink.

Facebook allowed us to connect and reconnect with many whom we have shared our journey. We have truly enjoyed being able to celebrate the mountaintops and support and encourage each other through the darkest of valleys. In the real world, Casey had plateaued years ago in many areas and

Chapter 8 actually realized some regression in both stamina and her ambulatory level.

Addicted to her Apple products, her attention span and window of cooperation

(which wasn’t stellar to begin with) was even worse. The wheelchair was now a must as even the simplest of errands and life experiences were tentative at best. Attending and being active in a local church body was now a memory.

Quite honestly, actively attending much of anything had to be weighed to see if it was worth the potential hassle.

One thing I have learned in my journey is that there are two distinct kinds of hope. An earthly hope in which we can help determine and share with others, and an eternal hope which we have nothing to determine but are still called to share. Maybe for other individuals and couples, it is easy to weld these two hopes together in a seamless garment of hope that comforts both, but for

Allison and me, it has been a struggle. It seems like getting on the same page of both present hope and future hope is much like a balance that won’t quite settle. Maybe that is part of our strength, carrying the weakest to help balance the scales.

As I mentioned earlier, I reached out to several friends and acquaintances to help define what hope meant to them. I was so appreciative of those replies.

The following is an excerpt from a friend’s blog. It is a very honest and insightful blog that addresses the ills of society regarding civil rights. He has

Chapter 8 graciously given me permission to share his words. The last paragraph has struck a chord with me and really provided a definition that describes the love of my life – Allison.

“It was then I realized most people fall within one of two categories. Either we’re people who live in the midst of struggle with very little hope, or we’re people who live in the midst of hope…with very little struggle. But very seldom do the people in these two categories change the world. Very seldom are they the ones we label as heroes in our history books. Instead those people have their own special category. They are the ones who live in the midst of struggle while being shaped by a future of hope. They are aware of the need for progress, but they live with unspeakable joy. They choose not to let their comfort blind them to the ills of society. However, they’re not willing to let society’s ills define how they see the future. It is the struggle they choose to live in the midst of that that makes them cry out “How long?!” But it is the optimism of change that transforms their cry into a shout of praise, “Not long!”

(Wade, 2015)

While Allison and I keep a foot in both present and future hope, we have been comforted by many who have walked beside us. From birth through today, we have been told countless times what a blessing Casey is. From this side, sometimes it doesn’t feel that way. Blessing can be defined as God’s favor and

Chapter 8 protection. More than I would like to admit, it has felt like a curse and punishment. How could a lifetime of caretaking and disappointment be a favor? I have learned a valuable lesson in how I view and define earthly blessings and hope. You must work for them. I believe God gave Casey as a seed to plant. We have had to water (sometimes too much and we have accidents), fertilize, prune, weed, protect from harsh weather, and make sure she gets plenty of Son light so she can produce fruits. When it is time, it is time to harvest the sweetest of fruits that Casey produces. These fruits of unconditional love, laughter, and numerous hugs are free to those she encounters. While these blessings are at no charge, it doesn’t mean they are free – there is an associated price.

Allison was continuing to live amid the struggle while searching for some type of earthly hope that would allow her to use her gifts. She still felt empty while trying to find her place as a stay at home parent of an adult child. In April

2016, the seeds were planted, and work started to grow the blessings of hope.

Five ladies met in our living room and began discussing what would eventually become a non-profit organization called The Sparrow Project. The organization’s mission is to provide a safe environment for adults with intellectual disabilities that promotes happy and fulfilled lives through work skills, life skills, creative interests, and social activities. In a little more than a year, what began as four young adults with special needs, meeting in homes,

Chapter 8 has grown into 26 participants meeting on a local college campus. These young adults take art, music, computer, and exercise classes. They volunteer their time to help shred documents for our school district. They also formed an evening social fraternity and enjoy activities such as ballgames, scavenger hunts, and ballroom dancing. God has blessed this program because women faithfully planted the seeds and worked hard to provide the blessings. They are the heroes who lived in the midst of the struggle shaped by a future hope that shouted not long!

In addition to being the president and founding member of The Sparrow

Project, Allison has also enjoyed the opportunity to serve on the board of the very school district that has given so much to our family. Once again, God provided an opportunity for Allison to use her professional experience and love of children to plant the seeds of blessings. As usual, Allison has figured out a way to keep her plate full while in the service of others. She wouldn’t have it any other way and neither would Ian and I as it consumes her time and limits our servitude.

I am so thankful for the around-the-corner hope that has provided a vision of endless hope.

Chapter 9

A Picture of Hope

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.” Lin Yutang

“I still believe in some faraway place where it’s all okay.” Terri Guillemets

“Three grand essentials to happiness in this life are something to do, something to love and something to hope for.” Joseph Addison

“Keep all special thoughts and memories for lifetimes to come. Share these keepsakes with others to inspire hope and build from the past, which can bridge to the future.” Mattie Stepanek

Currently the path is wide and smooth, and the steps are easy as I enjoy the view from the top of the mountain. Allison and I are enjoying the hike together.

We have learned to take our time and enjoy these tranquil times and put storm preparations on the back burner. We know sooner than we want we will be walking down the other side of the mountain into the darkness of the valley.

Everywhere I look, I see the roads traveled both up and down that were formed by broken and suffering people.

I have been taught through living life and by the wisdom of fellow sojourners that true hope is realized through the suffering and brokenness along the way.

There is no need for hope either for today or a faraway place if one doesn’t have any need for something better. As what is left of my hair fades from gray to silver, I have discovered I find great inspiration from the broken. To the

Chapter 9 widowed mom trying to pull double duty as mom and dad and providing a full life for your kids, I admire your dogged determination. To the parents who have experienced the ultimate pain of burying a child and have continued to be a light of hope for those in need by fighting the good fight and not giving up, I am humbled by your grace and strength. To the parents raising kids on their own struggling to stay afloat financially, physically, and emotionally, I am amazed at your strength. To the family who is battling like crazy to hold things together as their child battles the demons of mental illness or addiction, I am in awe of your stamina and willpower to hold on. To those who battle the black dog of depression and find a way to keep their soul above water, I am touched by your will to keep going when it hurts more than giving up. To those who have been hurt by institutional church but continue to serve their Creator, I am a witness to your faith. To those who are watching their loved ones battle debilitating diseases, I see the pain and commitment it takes to be a caretaker.

All of you provide me with a strength and inspiration to keep on my journey – please know the life you lead is worth the fight. You provide hope to those looking to follow the road you are walking into existence.

I have also learned to embrace the whispers of life and the mysteries of my faith. I no longer watch the “news” or engage in “debates” via social media.

The loudness of everyone screaming their opinions now falls on deaf ears.

While the genetics I inherited from my mother’s family that used to cause me to

Chapter 9 be ready to pounce, I have found I no longer have the energy to waste engaging in these discussions. I used to have strong opinions on many political, social, and faith-based issues, but now not so much. My faith walk can now be defined by stating the Apostle’s Creed and the peace I find in The Lord’s Prayer and my understanding of the Resurrection. Everything else from Calvinism vs.

Arminianism, eschatology views and denominationalism is just wasted banter.

I finally understand the meaning of “people don’t care how much you know until they know how much you care”. This is either part of my maturity or a result of my journey with Casey. I would like to think a little bit of both. I am much more concerned with listening to the whispers of those in search of hope than I am using my opinions and perceived knowledge to convince them to think like me. Casey has made me a softer person with more empathy. I get a few more lumps in my throat and tears in my eyes these days. I doubt that would be the case if Casey was “normal.”

A couple of weeks ago as Allison and I were having a slumber party because we let Casey sleep well into the afternoon, the following topics were discussed:

How do we handle drooling; solutions to placing snacks out of reach and hidden; realization that on a good week we might get to bed at the same time before

11:30 twice a week; that it is not the isolation from people but opportunities that wear you down; questioning whether or not I earned a college degree given my disregard for punctuation, et cetera. While they might seem odd to you, they are

Chapter 9 a snapshot into our life. After we exhausted these topics, we then approached a subject that did not question my educational resume. “Do you think our marriage would be as strong if Casey was normal?” We both agreed that it would not. We believe that taking care of Casey for 26 years has strengthened our bond. We are convinced that we were both given the responsibility to honestly share our life experiences with others. How we deliver this message is as different as we are, but the important part to us is we try to answer the call.

You see, we have been blessed to have something to do, someone to love, and something to hope for, and we have to share. We feel that is our way of making sure the little baby we held in our arms and the responsibility we were given to influence not only her but everyone she met gets delivered – we have to share her story.

To those of us who claim to be followers of Christ, we are able to find hope throughout scripture. Jeremiah 29:11, Hebrews 11:1, Psalm 42:11, Isaiah

40:31, Romans 15:13, Psalm 119:114, Micah 7:7, and Romans 5:3-5 are all a very small sampling of hope verses. In paraphrasing a friend, the hope of God is truly our anchor. It holds us tethered in the most violent of life’s storms.

The difficulty is fully embracing this hope. It lies in the mystery and darkness of the work done on the cross on Good Friday to the hope of Resurrection

Sunday. The hope must originate with Jesus in a place where death has been defeated, where we are invited to reside with Him. This invitation is not to just

Chapter 9 some far off future that we don’t understand, but into a life that through all its complexities, pain, and disappointment is full of hope.

The teaching of Resurrection is a vital part of my future hope. If you could imagine never having a conversation with your child beyond no more than a dozen short phrases, her reaching for your hand as her gait becomes more unsteady, the blank stares, the tears that seem to grow in intensity as she ages, the nervousness, and uncertainty, then maybe this will explain it to you.

My battle with insomnia has made me an expert on popular movies that make the cable play list. One of my favorites is Gladiator. I am always captivated by this movie and try to make sure I watch the end. It really speaks to me. Even though he is wounded by Commodus, Maximus fights through the deep wound to kill Commodus. As he battles, he has a vision of a big gate opening, and there his son and wife who were brutally taken from him are waiting in the fields of Elysium. He is able to walk with his family again where life is easiest for them. Among his last words were to free his men. Even though I am not as tough as Maximus and don’t look good in armor, I feel like I can relate. I feel like I have been deeply wounded by the great deceiver. I am battling with all I have to defeat him, and with my last words, I say free my doubts, fears, and disbelief. My daughter, Casey, is waiting on me (yes, I hope she is waiting) on the plains of Elysium. We have a lot of catching up to do. In my vision, she is

Chapter 9 running to me and taking my hand and leading me. She is talking nonstop and excitedly telling me who and what all she has seen. She stops to take a breath, and I am able to ask her did you really see people when you used to say

“who is that man/girl right there” in an empty room. I also work in an apology for the times I got frustrated with her. She tells me that it’s alright - all is forgiven and that she loves me. We walk for years, hand in hand, in our new bodies talking to each other and sharing the life we lost. I trust to see you there. I’m sure Casey will introduce us.

The vision above gives me great hope – a four letter word to which I hold onto with all my strength.