H O P E I S A F O U R - L E T T E R W O R D

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

ROGER RICHEY

Copyright © 2017 by Roger Richey

All rights reserved.

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.”

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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.

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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.

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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.

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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,

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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

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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)

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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

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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

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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.

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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…

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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.

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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

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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

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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.

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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

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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,

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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.

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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

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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

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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.

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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.

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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

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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

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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

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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 –

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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?

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Hope was my only medicine but the bottle was empty.

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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.

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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

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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

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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

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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,

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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

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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.

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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

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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

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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.

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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

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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.

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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

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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

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“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

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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

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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.

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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

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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

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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

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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

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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,

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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.

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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

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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

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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

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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

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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

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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.