The Vow

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This weekend I got the opportunity to speak at the Ohio Sibs Convention—an organization that supports both individuals with disabilities and their siblings. I came to an odd conclusion. I will without doubt, be the sole care provider for my brothers and possibly my sister one day. I had thought about it before. It would just be like old times, spending every moment with my best friends. But this time it really hit me.

I’m guessing it’s a similar feeling to that of a forced marriage, only with the opposite perks. A prince marries his princess, and they spend their lives in continued luxury, forcing themselves to build a relationship in order to maintain the esteemed family bloodline. They have everything they need but do they truly love each other?

Then I look from my side. I automatically have more mouths to feed, I might be giving up future expeditions with my potential spouse, or, what if I don’t even find a spouse because I’m seen as the intimidating packaged deal? After considering that there is one thing I know I will always have: unconditional love from my biggest companions. We lose societal advantages but we know how to survive together.

Both sides come across as selfish. If the prince or princess does not love the other then they are not pitied. Why should they be? Everything is handed to them from birth. Even a luxurious wedding. Or me, expressing the hard truths of raising my adult siblings. It is societally wrong to consider my own future solely, and complain about a family obligation.

The prince and princess are born to fill very expensive, uncomfortable shoes. I was born to fill the middle class supportive shoes while aiding in the tying, strapping, and zipping of the shoes of my siblings. Some may dream to toe-in the shoes of a princess, others may dare to lace my shoes onto their feet. But the ultimate Orthopedist made those shoes for us only. They will never fit anyone quite like they fit us.

Which has more worth, Luxury or Love?

To be frank, this is the point when I could narrate a multitude of parables and proverbs of why choosing love over wealth is what is right and what is just. On the other hand, the Holocaust, the murder of Jesus, and slavery of African Americans were all built on the foundation of it’s the right thing to do.

I am making a vow that I will be the future provider for my brothers. I will not do it because it’s the right thing to do. I will do it because I want to. I don’t need to taste wealth or fame to know that the relationship with my brothers is worth so much more. And I need my siblings as much as they need me.

This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters. If anyone has material possessions and sees a brother or sister in need but has no pity on them how can the love of God be that person? 1 John 3:16-17

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Becoming Somebody

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“Not long ago and not far away, a Nobody named Ordinary lived in the Land of Familiar.”—Bruce Wilkinson, The Dream Giver

How many times have you felt like Ordinary? You wake up every morning to the nagging chirp of your alarm, you throw on your average clothes. You go to work, file the same papers, eat the same lunch, and drink the same coffee out of the familiar mug with an ordinary logo imprinted on it. Sometimes we don’t even realize our lifestyle because it’s just a habit; it’s comfortable. But what if you step out of that box?

For me, I grew up outside of the box. I’m the left handed girl that always bumps your elbow at the dinner table. I’m part of the quirky family that walks around with all the special needs kids. I’m the girl that majored in two completely different subjects (music and business). I’m not saying these things to be negative. They are part of what makes me not a nobody—but I still had to piece together how to become a somebody.

When I was born, The Dream Giver gave me The Big Plan. It was what He wants me to do with my life. He knew who I would be, that I would need my younger brothers, and a right brained mind that likes logic and creativity. (Not to sound cliché, but everything does happen for a reason.) After twenty-two years, I found my dream. Ok, yes I’m young. (But don’t think it was easy for me! Three college major switches, a fifth year of tuition and a pretty penny to match in school loans—that just tips the surface.) But I want to be like the Dream Giver. I want to help others recognize their dreams. My dream—to help anyone, but particularly people with disabilities find their dreams.

On the other side of familiar, it’s scary. There are giants that get in your way, coaxing you to give up on your irrational life plan. There are times the road seems bare, with no resources to help you to your dream. Worst, you step farther and farther from familiar, each step deeper into the unknown leaving you stripped of all confidence that you will ever make your dream a reality. Is your dream really worth it.

While reading about ordinary I have discovered that by the power of the Dream Giver, everyone is implanted with a vision. It wasn’t just Martin Luther King Jr., Mother Theresa, Sam Walton, or Vince Lombardi. We are all born with a passion, but we don’t all take the road to fulfill it.

Think for a minute. If someone handed you a million dollars, what would you do? What have you always been good at? What needs do you care about most? Who do you admire most? What makes you feel fulfilled? Even if you haven’t discovered it yet, there is something in you that matches these questions. You have to ask yourself, “What legacy do I want to leave?”

In just a couple weeks I open the doors to my dream, literally. The doors to The Spotted Cow Coffeehouse, a workplace opportunity for adults with disabilities, will be open for everyone to see. Throughout the process I’ve had giants standing in my way, road blocks, everything. There was a point where I questioned, is this really worth it? I could just use my business major and get a normal desk job, and for once be a normal person! But I can stand in the shop, make a latte, and look into the eyes of my little brothers, and I know, this is what I was born to do. This is the big plan!

I’m the left-handed music and business graduate with the quirky family. But I’m also the girl who has a big plan to fulfill. I’m a somebody. You are too.

And I heard a man’s voice between the banks of the Ulai, and it called, “Gabriel, make this man understand the vision.” –Daniel 8:16

Wilkinson, Bruce, David Kopp, and Heather Harpham Kopp. The Dream Giver. Sisters, Or.: Multnomah, 2003. Print.

To Eric and Levi: I Give You My Dream

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To my zany, quirky, sassy, spitfire, loving, caring little brothers, Eric and Levi,

First I want to say that, from the moment I met both of you, I knew you were special. Not in the way that the world saw you, but in your character, your smile, and your ability to light up a room. You are my best friends and my inspiration. And from the moment that Gabe went to be with Jesus, you were my protection. You gave the best hugs, and you always listened. You knew the same hurt, and we took the road together.

I remember when we were young (I was around eight and you were both five), I asked our older brother Gabe to build me a bus. I remember getting chuckles from mom, dad, and Gabe, but I was serious. They all asked me, “For what?”. It was for you. I wanted to have a bus to start a school that was designed for you.

As I grew older, I stuck with this dream. In seventh grade, I wrote a paper expressing what I wanted to be when I was older—a special needs teacher, I wrote. I saw your passions, your struggles, your happiness, and I knew that being smothered in your presence was my biggest dream.

I kept this dream into my college years and I studied to become a special needs teacher. But about two years in, I got tired. The concepts I learned, the classrooms I saw, that was not where you were. I stopped pursuing that dream. In the third year, God put me on a new road—business. I could see how God had helped mom and dad start Downsize Farm. Under His hand, they made a place for you. A place where you would have opportunity, friendships, challenges, and adventures.

I remember reading your IEPs once. Eric, yours said that you wanted to be a trash-man. Levi, yours was to work at Walmart. Is that what you want to be? If that is your dream then I want you to go for it! But if not, I am making something for you—a coffee shop. (I know you don’t like coffee, but we will have hot chocolate too!) I am designing a place where you can not only work, but be the strongest, and coolest employees a business has ever seen. I want to teach you what I have learned. I want you to be able to use all of your abilities to the fullest, and be able to show them off to every person that walks into our building. Most importantly, it is my eternal dream to create and fulfill the dreams that you have.

On May 21st I will open a coffeehouse. I know you think coffee is gross, but if you join this road with me I will show you something. Every bean in that coffee has a purpose. Some beans are big, some beans are small. Some are dark, some are light—but they all create a beautiful mixture to jumpstart the day. On this Earth you could say we are all like little beans. We run around, doing daily tasks, and fulfilling our flavored lives. But God put every one of us here to do something special. I hope that by fulfilling this dream, I am following God’s vision by helping you create your own dreams.

Will you, my red and blue power rangers, take on this mission with me?

Love,

Your crazy, quirky, hopeful, inspired, pink power ranger big sister, Bobbi Myrhee

Jimmy: The Trouble Maker

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 While working for my parents’ business I have learned a lot of things. I have learned about finance and the importance of managing funds. I have learned the concept of confidentiality. I have learned how to write ISP’s, goals, daily paperwork, yada yada. Every day I refresh my knowledge in business and the DODD field.  But the biggest thing I have learned cannot be measured. Sometimes it’s a concept that can’t even be grasped until you have gone through the experience. The people that come to our farm, our clients, they offer me something new every single day.

I guess the whole point of our business (a vocational/day habilitation program) is to teach others. We are supposed to teach people with disabilities how to learn basic living skills and job concepts so that they can learn to thrive in the real world. One particular guy, Jimmy, came to the farm for that purpose.

Jimmy came with a lot of baggage. He had originally worked in a workshop, holding a commendable 9 to 5 job, making widgets. While sitting at a table for hours on end, Jimmy was making a puny paycheck, and he was also developing behaviors. These behaviors lead him to be violent, and eventually led to requiring him to have a behavior plan. (A behavior plan tracks the client’s monthly episodes. It also explains how to handle the behavior.) When Jimmy’s application came to us, we were all a bit hesitant. Was it smart to put other clients in jeopardy with Jimmy’s intense behaviors? Would we be able to handle the episodes effectively? Lucky for us, my dad has a five star heart for giving people 72 second chances. Seriously, lucky for us!

If you read a few of my other blogs, you will recall the 5 L’s: Live, Love, Laugh, Learn, and Leave a Legacy. While we had mandated goals for each of our clients, we also had our own set of goals for our clients, the 5 L’s. When Jimmy first came, of course we had a few issues. Some screams, some anger, and of course stubbornness. But over time, Jimmy transformed.

Jimmy learned to live: he eventually gave in and participated in our different farm activities like crafts and scrapbooking. (He gave me half of his crafts as a gift, and I still have most of them to this day.) He also loved parties. Every month we would have a birthday party for the clients that were born during that particular month. Right after singing happy birthday, Jimmy would shout “PARTY ONNNNN” at the top of his lungs!

Jimmy learned to love: In fact he mastered this goal. He loves the ladies! Every morning when I walked into the barn, Jimmy would give me a kiss on the hand and give me a little note that said love kiss love kiss love kiss Jimmy. He was the biggest flirt ever! Every year we also have a Christmas ball. All of the clients dress up in dresses and suits that were donated to the farm. We decorate the barn, set up a picture area and party on! Jimmy would always go straight to my best friend Heather and I and ask us to dance. He also loved his client advocate, Sharon. Though she sometimes gave him tough love, he would eventually submit to her requests.

Jimmy learned to laugh: Aside from his crazy PARTY ONN outbursts, Jimmy also made a lot of friends. His flirting with the ladies was just the beginning. He also got along pretty well with a lot of the people in his group. And he loved my dad’s quirky and excited morning meetings. Jimmy would also get excited about a lot of things like going to PAWS or our weekly bowling trips. He has the biggest smile when he is energized about something!

Jimmy definitely learned a lot: Obviously he learned to live, laugh, and love. But he also learned how to overcome his behavior. He wasn’t a burden, he was a joy to have around. And honestly if I was allowed to pick a favorite client…shh…it would be Jimmy. Jimmy was the guy sitting in the workshop, who had the uncontrollable outbursts, sending staff running to control him. When he was at the farm, you would never think he was the same person. Here, he was the loveable flirt who would kiss any pretty girl’s hand and who always had a smile on his face.

Jimmy learned to leave a legacy: Last summer Jimmy went to the hospital for some major complications. His stomach completely flipped, and this wasn’t the first time. The last time it happened they had to take out half of his small intestine. But this time it was worse. They had to go in and remove all of it this time. I went to visit Jimmy in the hospital. There he laid. His face was as white as his hospital sheets. He was hooked up to hundreds of wires and cords. But Jimmy still had a smile on his face. He held my hand and kissed it again. My dad talked with him about Jesus and though he was only partially verbal, he affirmed to us that he believed in Jesus and he knew for a fact that he was going to Heaven.

A few days later we got a call that Jimmy was still deteriorating. He was in so much pain, and doctors couldn’t give him anymore medication to keep up with it. He was giving up on this life and ready to move to the next. I went back to the hospital to say goodbye. I saw Jimmy again, engulfed in cords with a snow painted face. But this time was different. He couldn’t talk, or smile. He just laid there and moaned in pain. I put my hand on his and tried with all my might to fight back the tears, and without success. We prayed and sang hymns to remind him that he was standing at the door to paradise.

That night, I kissed Jimmy’s hand this time, and I said goodbye. The next day Jimmy entered eternity.

When my parents and I were riding to the funeral I said to my dad, “You know, Jimmy passed every one of the 5L goals.” It made sense to me at that point that it didn’t matter what specific, measurable, and time oriented goal we gave to our clients. We are here to be part of their lives, not to show them the real world. We are here to show them that we care about them as an individual, a being, and not just another worker. And along the way, they teach us too. Jimmy taught me no matter what we experience in this life, no matter how angry and frustrated we get, it can be overcome; we can have joy.

Though it was so hard to watch Jimmy go, I knew it was best for him. He no longer feels the pain that he felt that last few weeks of his life. He will never again experience the anger and frustration of not being able to communicate. He has a new body, and he is free of every difficulty he has ever experienced in this life. Seeing his face within those last few days revealed his pain, but they also revealed peace. Others may say that he was feeble minded; that there are concepts he cannot understand. But Jimmy understood where he was going. For that reason he had peace, and when looking into his eyes I knew I could have peace through his death as well.

I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world. –John 16:33

Who Needs a Mustard Seed When You Have a Grapefruit?

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When you meet Diana, you may think she is a little different. But when you dig deeper you will discover that she has a stronger faith than many can even fathom. Through her entire life, her brother John has been there every step of the way. This is his account of their family’s journey through a special world.

When Diana was very young, she was diagnosed with hypothyroidism. But over time her family realized that she was still a little different. Diana’s mother had taken Dilantin while she was pregnant with all of her children, but it affected Diana little differently. She had adopted a defect that affects only 1 in 10,000 people: William’s syndrome*. But this was only the beginning of Diana’s journey. When she was 10, Diana slowly began to lose her appetite, energy, and her smile. When she woke up in the middle of the night, screaming from the pain in her abdomen, her family had had enough with her agony and took her to the local hospital. On August 28, 2008, her MRI revealed more than just your average stomach ache.

Diana was taken straight from her MRI to Children’s hospital for emergency surgery. Her brother John remembers sitting anxiously in the waiting room, crowded with 30 of Diana’s closest friends and family. And after waiting a virtual eternity, the doctor rushed in to explain an agonizing fear. Both of Diana’s ovaries were the size of grapefruits, saturated with Burkett’s lymphoma. The doctor gave the family two options: remove the cancer, leaving Diana without the possibility to ever conceive; or leave the ovaries intact, and wait for the malady to consume her entire ten year-old body. Diana’s mother broke down, unable to answer the doctor’s options; unable to bare the news that her child would never have her own children, or fathom the idea that Diana could die. Without question, John and his father told the doctor to take out the cancer.

Six weeks later, Diana started chemo-therapy. Her cancer was still progressing rapidly, and she was deteriorating quickly. On October 8,2008, she faced the worst surgery of her battle. John got a call from his dad telling him to drive to Children’s hospital, and say goodbye to his sister. He remembered the surreal drive, gripping the steering wheel, and crying out to God. He walked into the room, and there lied Diana, without a hint of hair on her brittle body, and with only God’s will sustaining her. John held her hand and began to cry, when his sister explained confidently, “Don’t cry John. I’ll be fine. Jesus will take care of me.” Diana was taken into emergency-exploratory surgery where the surgeon began to slice and sever anything in her body that appeared to be cancerous. John walked with his little sister, enveloped in IV’s and cords, telling her that he loved her and she would always be with him, no matter what.

Just as she had asserted, Diana survived the surgery. But she spent the next 21 days in an induced coma. John often visited her lifeless body. He would talk to her, knowing there would be no response. Diana’s exhausted body was there but the sister he knew was invisible. She was big—fluid engulfing her body. She was not Diana.

The battle continued. Diana remained strong, and her family supported her through every step. John and every man in the family, and even family friends had shaved their hair, then used shaving cream and a straight razor. Because bald was new normal for Diana, it would be their normal too. (She was mad though and said they all looked funny.) Throughout Diana’s journey she faced rounds and rounds of chemo. Some were fast and aggressive to wipe out the insistent disease. Others were slow and steady to sustain her weak body. Diana endured a surgery every two to three weeks, totaling a lurid haze of thirteen surgeries over the course of nine months. The family spent every one of those nights wondering if Diana would still be alive in the morning. But she remained in good spirits, and kept a smile on her face.

Through the haze of the family’s journey, John said he could feel the presence of God; he could feel Him working. There were churches the family had never heard of, calling to say they were praying for Diana. There were thousands of people who had never even met Diana, and God was healing her through their cries. Then on Saint Patrick’s Day, 2009, John got a call from his dad at one in the morning, “the cancer is gone.” John was in disbelief. He sat with the phone to his ear, speechless, eyes filled with tears. After days of praying to God, “You are the great physician, you can heal any of that”, he was shocked. “God just healed my sister.” Not a hint of cancer was in her body. It was a miracle; it was the healing power of God.

This didn’t end the journey though. During Christmas Diana was home, but she was too weak to leave her bed. They still had trips to Children’s for low blood cell counts and excessive vomiting. She spent the next couple years in a wheel chair because of her weakness. And the family still lived in fear that the cancer could return. Diana visited the doctor for consistent check-ups, and overtime they got farther and farther apart—but most importantly, they all revealed that Diana had still won her cancer battle.

This past year would be Diana’s fourth year of being cancer free. She is now considered a survivor, and she got the chance this year to carry the Relay for Life banner. John explained “looking back, seeing my sister lay lifeless, and now being able to watch her carry that flag is amazing.”

When people say, I can’t overcome that, John says don’t make God so small that you think that He can’t. He had accepted the fact that Diana would die. It was a waiting game to see when. “We had funeral conversations. But that conversation was saying how small God is.” The journey showed that God doesn’t give you anything you can’t overcome. You have to take God out of the box that this is too hard for me, this is too big for me to handle.

John explains,

People don’t have ovaries size of grapefruit, and live. That goes to show, don’t read over the verse, with God all things are possible. And when you see that in real life, it is so much more meaningful. It proves God is the ultimate healer; He is bigger than all disease and weakness. The journey put me in awe of who God was and what He can overcome. He taught me to trust what He is doing. I leaned on the verse, In all things God works for the good of those who love Him. (Romans 8:28)

Diana and my mom have shared their journey at many churches and events. God is using that story to draw people to Him; to work things together for His good. He has also shown He has a plan. My thoughts are not your thoughts, My ways are not your ways. (Isaiah 55:8) He has a plan and we have to be on board so He can use His plan for His glory.

Diana also shared with me, “When I found out I had cancer, I was devastated. I didn’t know what to do. I just prayed and I waited, and I waited. On August 10, 2009 they told me I was cancer free. And I thanked God for all He had done…When I tell my story at churches they clap, and I say thank you Lord, You are so good.”

On May 18th of this year, Diana turned fifteen and she is still cancer free. She has battled the side effects of hypothyroidism, she has overcome the adversity brought with William’s syndrome, and she has defeated cancer. Diana wasn’t supposed to live past eleven and she gives all of her glory to God.

Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘move from here to there,’ and it will move. Nothing will be impossible for you. Matthew 17:20

*Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

The Rat Race Matrix

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Every day is a contribution to our life matrix—we have numbers representing our daily assignments as we race through our perpetual patterns over and over and over. From the chime of our morning alarm we jump out of bed, grab a cup of coffee, head to work, come home to watch the news while eating our TV dinners, and take a breather before we drift off to repeat it all the next day. But every day we have numbers that make our pattern special. We can have one number that can make a slight change or a drastic change in our environment, and sometimes we can add one number that leaves our matrix without a solution.

At work this past week we all started our daily Friday routine. Our farm always takes a morning trip to McDonald’s on Fridays and we then break off into two groups. From here each group takes a community trip to either do community service, or take part in a public activity that many of our clients may not otherwise get the opportunity to experience.

This past Friday our group took a community service trip to a local nursing home, where we socialized and handed out cookies to the elderly. As I walked with my sister, Randi, she did her usual ‘Randi mannerisms’. Every person that wore an Ohio State shirt, she had to touch the O and make it known that she was a fan, and every time she saw a man with a beard, she would try to caress it to soothe her obsession.

One person added a new emphasis to our day. As we walked past one room where a man was standing outside his humble abode, Randi energetically yet politely said Hi! I looked back to see the man intently staring down my sister as if he seen a blue flamingo with one leg. (In fact his expression was so comical I literally thought he had forged the pose for our amusement!) As we kept walking, I heard the man yelp– You retards! They’re all the same! and then slam his door. I looked at Randi and giggled so she would continue to think it was a joke. But inside I was thinking about how much I wanted to run back there, take the scalpel he had just thrown into my back, and poke out his eyeballs with it.

 I was disgusted by the comment, but I did not let it affect my daily matrix; in my mind I knew he was wrong. In the societal rat race, she is just like every other person with special needs. But Randi cannot be replicated. Come on, how many people do you know that have the courage to walk up to a complete stranger and snatch their beard!

Before we left, Randi saw the side profile of a man with a beard who was in a wheel chair. Just as she went up to grab the luxuriant whiskers she got a ping to the sequence. The man had no legs. You could tell by her expression, she was thinking, Whoa! And I thought I had it bad! She too, had met her blue flamingo. But my sister, one that society would put at the back of the starting line, showed that she was wiser than anticipated. She continued her fuzz fondling sequence (well until I told her it was rude). Then she blossomed up a little smile and waved goodbye to the man.

The bible says– since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders, and let us run with perseverance the race marked out for us. (Hebrews 12:1) We had witnessed a man engulf the hindrance of observing someone who was different, and it slammed the door on an optimistic sequence. But when Randi hit the same pattern, she took the zap to her matrix and fueled up for the race.

Down at the Farm

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A. “Is that your girlfriend?”
B. “no.”
A.”Yess! Yess! Yess! Yess!”
All: “????”
A: “Now you can date my sister!”

At the farm one of the client advocates (supervisor for their group of clients) gave a quick friendly hug to me at the farm, posing the client’s question to start the above conversation.