Not your typical Graduate
Kennady just graduated from High School. Class of 2020! We never dreamed that this day would come.
Fifteen years ago, at age 3, she started pre-K at Carver Elementary in Lockhart, TX. The school bus would roll up to our house before the sun was up. We would load her up and send her off. Since then, we have changed schools five times in two districts. She has been taught and loved on by some of the finest humans to walk the planet. Mrs. Lucas, Ms. Williams, Mrs. Cato, Mrs. Travis, Mrs. Opiela, and Mrs. Noble loved our daughter. They would push her to the limits with therapy and strategies for her level of learning. For years, they worked with her to communicate via a computer and eye tracking system. She started making decisions and choices with her eye gaze. Every year we had ARD meetings where a group of teachers and faculty would assemble and discuss her status. They would propose goals for Kennady and discuss their plans to help her accomplish the goals. These meeting would always wreck us emotionally. It blew our minds to have these professionals speak such hope and positivity into Kennady.
One of our favorite parts of school was Kennady’s interaction with other, “normal” kids. Throughout the years, she would be mainlined with PE, band, or other classes. For several years, she had peers assigned to help her in class. It was a buddy system where they would help her interact with the class content or they would wheel her around the halls. One year in elementary, we (the parents) wept as we saw a group of “normal” girls push Kennady’s wheelchair during a field day relay race. They bounced down the grassy track, laughing all the way. Kennady was laughing the most. It was an incredible feeling to have others love and accept our daughter without reservation.
Kennady Steele graduates!
To be honest, there were many times when we wrestled with her being in school. Is it worth it? Is she taking up the spot of someone else that needs to be there more? It takes so much work to get her ready, on the bus, and through the day. She often slept in school. In fact, one year at the ARD, one of the teacher’s goals was for her to stay awake during class. Ha! I think she accomplished that one!
Now, we look back on 15 years and think about all the people that interacted with Kennady. Hundreds of people talked with her, helped her, walked with her, listened to her. What kind of impact has she made on them? How will their lives be different because of Kennady’s still, calm presence? Kennady never made fun of people at school. She never judged anyone or intentionally made anyone feel left behind. Quite the opposite is the case. Kennady makes people feel important and valuable. This past Sunday, we honored all the high school graduates at our church. We listed everyone’s accomplishments at school, stuff they were involved in, and their future plans. Here is what we stated for Kennady’s future:
3 Ways to Beat Fear with Faith
We have to find ways to beat fear with faith. We suffer greatly when don’t. During this COVID 19 season we are all bombarded with reasons to be afraid. Tens of thousands of people have died. We may not have enough hospital beds or ventilators. Your job has been terminated. You can’t meet up with friends at your favorite restaurant. We were out of toilet paper for weeks.
Every single news story for over 6 weeks has been depressing. Probably the worst part of this is that the news outlets refuse to give any silver lining to their reporting. Even stories that pop up about a possible medicine are quickly quieted.
In reality, it has been tough. Many people have suffered.
The other day someone asked me (Robin), “How are you and Erica moving forward in this season having a daughter with such profound special needs and vulnerability?” I quickly said, “We are moving forward like we have for the last 18 years.”
It hasn’t always been easy.
Right after birth, the doctors told us that Kennady would not live a long life. In fact, we were told to “take her home and enjoy her” while we waited for her to die (in the next 6-12 months). So, we did. We went home and expected for her to die. The biggest threats to her health are seizures, shunt malfunction, and flu/pneumonia.
For the first several years, we were quite concerned during the flu season. One time when she was around 2 years old, she aspirated, developed pneumonia, and went into the ICU for well over a week. We thought it was the end. We were preparing ourselves mentally for the day when she died. However, when Kennady was around 4 years old something shifted inside me. I realized that I was postured for the negative. I was praying for God to heal and change Kennady. I wanted to avoid death and for the risk to go away. One day while I was praying, I clearly heard from God. I was praying for her to change so much that I was not loving her for…. her…. for WHO she was. I was unable to love her only as my daughter because I was so focused on her changing and being shielded from death.
From that point, I started living life like she was going to live instead die. I started shifting my expectations of her being “normal” and decided to love her the way she was. To use a sporting analogy, I shifted from playing only defense to playing offense.
I get the sense that most Americans are in a defensive posture right now. We are hunkered down in fear. We are afraid for our health, our family and friends, our economy, our schooling, our celebrations, our entertainment… the list goes on and on.
How do we shift from fear to faith?
- Make a Decision – When Erica and I made the shift in our family years back, we made a statement that has guided us through every season: “We are not going to let Kennady’s condition define her or our family.” We had seen many special needs families stuck at home. They were either afraid to go out or just too tired. We were going to: go to church, out to eat, send Kennady to school, and go on vacations. Our decision set a course for us. It pushed us when we felt weak. However, to be clear, our decision was not about us being strong. On the contrary, it was a declaration that God defines us (not our circumstances or abilities). This decision forced us to continually look to God… to lean on his understanding and ways.
- Be Wise – When it came to Kennady getting sick with the flu or other virus, we were going to be extremely conscious of the danger and risk. We would be strict about washing our hands, not going around people who were sick, not going around Kennady if we were sick (we would take shifts). I can’t remember the last time I touched a restroom door handle. It never happens. We have carried hand cleaner around in our bags, purses, cars. I shake hands with hundreds of people on Sunday mornings. When I go back to my seat, I use hand cleaner to keep my hands free of junk. We started building lifestyle habits that kept us as safe as possible. When Jesus sent his disciples out into the danger of political pressure, violence, leprosy, and many other threats, he told them to be wise as serpents and harmless as doves. (Matthew 10:16). We have to understand that the mission doesn’t stop when we face challenge, but we reevaluate HOW we go about it.
- Understand God’s Sovereignty and Control
– When you surrender to the power and plan of God, it takes so much pressure off of you. As I said above, we do have some responsibility in life. We have decisions to make. However, that is only a small part of how things work. This is God’s earth. He is the one that started it, had a plan for it, redeemed it, and will bring a FULL resolution someday where there will no more suffering or pain. What we have learned with Kennady is that if it is not your time to die… you are not going to die. If it is your time… it is your time. I see this same principle played out in my grandmother who is 101 years old. She
is currently sequestered in her nursing home with no visitors allowed. She has lived through the roaring 20s, the great depression, the invention of indoor plumbing, television, World War II, Holocaust, Vietnam War, Kennady assassination, 9/11, the corona virus…over 10 years ago she had a debilitating stroke and has been restricted to a wheelchair… yet… she keeps ticking! I went by her room on Friday and talked to her on the phone while looking at her through the window. She was happy. She only wants to see people….
Living with FAITH means releasing ourselves to God’s power and plan. This brings us into wholeness. We stop looking to CNN for good news and find rest in God’s ability to take something broken and make it GOOD. We find PEACE in God’s love for us. We know that we can keep living life, moving forward and not cowering in fear. This is wholeness.
Living in fear is living in brokenness. Living in FAITH is living life WHOLE.
Here are questions for you to ponder:
- What kind of decision do you need to make right now?
- How can you be wise with the threats, but still live your life?
- Where do you face the most fear? How does the truth of God address that specific scenario?
We are getting so close!
We are getting so close.
We approved all the proofs on Robin’s upcoming book last week! Then, we got an email from our production manager that she found an error on…the cover!! HA! We had spelled the word “forward” instead of “foreword”… So, we had to stop the presses and get it fixed. Just a few moments ago we approved everything again and things should be rolling soon. Below is an excerpt from chapter 4, describing the day Kennady was born.
HAPPY BIRTHDAY
We arrived at the doorstep of week thirty-eight and with it came the scheduled C-section delivery. Saturday, November 24, 2001, two days after Thanksgiving, Erica and I loaded the car early in the morning and took a nervous ride to Brackenridge Hospital. Our moms and dads were waiting there to greet us at the door. Kennady was to be the first grandchild for both sets of parents. While we waited for surgery, family members and church friends filtered through, offering prayers and advice. I sat with great anticipation and thought of all the possibilities.
I just knew that the doctor would deliver our baby girl, and there would be a miracle in the room. Everyone would be shocked as we saw our baby’s completely healthy body enter the world. We would glorify God because of the miracle He had performed for us all. Final tests would scientifically confirm the great work that an all-knowing, all-powerful God had accomplished. Just then, a nurse peeked her head around the corner and said, “It’s time to go!” Positioning herself as the wheelchair driver, she rolled Erica down the long hallway. The drama and delay began to crescendo with each rotation of the wheelchair across the linoleum flooring. I watched as the corridor narrowed, and Erica shrank out of sight.
My waiting continued until finally, I was called into the delivery room. I walked into a pristine, white room. Nurses and doctors worked around Erica. She was awake and able to squeak out a smile for me. I came to her side, and we whispered about how cold the room was. She was already prepped. Within a few quick moments, the doctor reached in and brought our daughter into the room.
The first moments of birth are life-changing—a flash of time every parent remembers forever. The first breaths, the first cry, the open eyes as they capture the hearts of everyone in the room. We looked in awe at the miracle of life—a distinct stand-alone frame in time—and in the next blink, our hearts sank a notch. We saw that her head was much larger than average.
I went straightaway to the small table where she was being tended to and began holding her hand and speaking to her. There was so much love between dad and baby girl at that moment. Standing there, I realized that my life was going to be different. I realized then that I needed to change my attitude, my expectations, and my prayers. My perspective needed to be shaped, not by my education or experience, but by how God was choosing to work through this child. Of course, all of those thoughts went un-articulated, but looking back, I see that moment at the bedside was monumental in the building of my faith. A day would come, not so far off, that my prayers, attitudes and expectations did indeed change.
That said, the worst was yet to come. The medical team sent our daughter immediately into the Neonatal Intensive Care Unit (NICU). The doctors wanted to perform an MRI early in the day to determine the extent of the birth defect. We all patiently waited and spoke with family members who were visiting the hospital. We were praying and believing for the MRI to show signs of healing. We just knew that it was only a matter of time before things would turn around. But, this was not the time…
What if you were whole and didn’t know it?
What if you were whole and did not even know it?
What if you were listening to so many outside voices that the truth was hiding underneath the noise?
Thousands of messages hurl towards us at breakneck speed. We give an audience to the ones that bring the most immediate attention or demand the quickest response. Unfortunately, many messages are negative. They make us feel like we need to earn more money, lose more weight, prove ourselves one more time, the list goes on and on. All the while, our Father in heaven is going unheard.
God continually says things like, “You are good. You are mine. You are forgiven. You matter. I made you on purpose. I will protect you. I will provide for you. I will fulfill all your needs. You will be satisfied with me.” God desired for us to be whole and worked to see it accomplished. Then, He continually proclaims that wholeness over us. Unfortunately, we do not hear His voice, and over time, we drift from being whole to being fragmented.
Erica and I are no different. Over the years, the difficulties of life have shouted to us. With the continual weight of Kennady’s care pulling us down, we have had plenty of opportunities to become discouraged. It is easy to get depressed!
We cannot go anywhere without considering how we will take care of Kennady. Taking a family vacation is almost impossible because of travel limitations. For example, there are changing tables for infants and small children in virtually every public space. However, there are no changing tables for 18 year olds. Kennady requires a full handicapped accessible shower and chair. It is easy to give up on a persistent challenge like this; it is easier just to stay home all the time.
If the physical toll was not enough, we also deal with frequent emotional tidal waves. We have family members who make fun of others by using the “r word.” Think about that for a second. They have known us for decades. They know all about Kennady, yet, they indirectly insult and devalue her with cheap words. A few years back, a friend told a group of us a “short bus” joke. The butt of the joke was that people with special needs ride on the “short” school bus. When that happened, I stared him in the eyes and said, “You do realize that my daughter rides the short bus?” He apologized profusely, but the damage was done.
These are just a couple of real-world examples that we face in our world with Kennady. These scenarios are not only challenging to suffer through from a practical standpoint, but a continual barrage over the years reinforces a loud message that we are not going to make it. They figuratively say things to us like, “You have no future. You cannot sustain this. You will run out of money. No one understands you. No one has the capacity to be your friend. You need to give up.”
As we go through each day, negative messages bombard us. If we listen to them unprepared, we will be swept away on a journey far from home. We will travel from wholeness to a land of bitter, angry, lost, loneliness, and incompleteness. Most people live in this spot separated from the truth of God. As a result, we try to find our way back to peace in any way possible. Humans spend billions of dollars to get our minds off the mess. We try anything we can to distract ourselves, change our surroundings, or buy our way out of it.
The only thing that genuinely leads us home is hearing our Father’s voice. I love what Augustine of Hippo said, “The Holy Scriptures are our letters from home.” The voice of our Father speaks truth amidst the chorus of confusing voices. In my darkest hours, the only thing that has assured my wholeness has been the truth of God’s voice. Hearing His voice and finding ways to center our lifestyle around it preserves the state of our hearts and minds.
This post is an excerpt from Robin Steele’s upcoming book: How To BE Made Whole
Do you hear God’s Voice?
We would love to hear from you.
Please post a comment or send us an email!
What People are Saying…
I (Robin) will never forget the moment that I stood in a Cuba house-church and listened to a young father tell me, “This message has changed my life.” There were around 40 people packed into a warm home on a Sunday evening in Havana. It was my first time to ever speak in Cuba. I was tired. We had just landed in the country less than a day before. We were rushed around from place to place.
As a pastor, I can get caught up in numbers. We always want to speak to thousands. However, this trip was completely different. Because of Cuba’s government restrictions, churches are small. In fact, the vast majorities are in homes. As I spoke that night, I told the incredible story of God working in my daughter’s story… how her story intersects mine… and others. About halfway through the message, I was overcome with emotion. I literally thought, Kennady is speaking all over the world.
Near the end of the message, I was in tears. The interpreter was in tears. God moved in that home. Several came to talk with me after, but the young father really stood out. The next morning he was going to court for a custody battle over his daughter. He told me that the story of my daughter made him realize that God was in control and there was no need for him to fear. Check out this post to hear the full story on what else happened in Cuba. My book is based on the message I told that father.
As I have wrapped up the publishing process, I have reached out to friends and connections for their take on the message. Check out what they are saying!
This book speaks to all of God’s people. This positive message is about overcoming challenges that life presents you and not allowing circumstances to dictate your future. Kennady’s story is an inspiration, led by the God-given love and acceptance of two wonderful people—Robin and Erica. Enjoy, be amazed, but most of all hear the love that our God has for us all.
—Dennis Franchione, former head football coach at Alabama and Texas A&M Universities
Robin shares an incredibly hopeful and inspiring message that points us all to Christ and reminds us that He knows what is best for each of us, even when things don’t go as we expect them to. Robin has continuously brought us to tears and moved our hearts through his family’s story. You will be amazed, inspired, and encouraged.
—Claire Culwell, International speaker and author, twin abortion survivor
In this book, Robin masterfully illustrates that what God says about us far outweighs what anyone else may think about us. The revelation that God has given Robin in this book is truly incredible. You’ll begin to feel the power in it the minute you begin to read his story. Thank you, Robin, for sharing your family’s story with the world. I’m better because of it!
—Jeremy Foster, lead pastor of Hope City
In this inspiring book, Robin shares how God’s Word has come alive through the arrival of their firstborn daughter, Kennady. As you face difficult challenges in life, this is a resource you will reference again and again. Prepare to be greatly encouraged!
—Joseph Sangl, founder of I Was Broke, Now I’m Not, CEO of INJOY Stewardship Solutions
How to Be Made Whole tells the story we all want and need to hear—that our lives can matter regardless of what we face, or what we feel unable to achieve. Robin, Erica, and Kennady are heroes to our family. Their story is contagious and resounds with God’s love and affirmation. You will be inspired and equipped to live a meaningful life. —John Ragsdale, senior pastor of The Hills Nashville
At first glance, this is a book about Kennady Steele and her story of God’s grace and meaning for her life. But as you read this book, you’ll discover it’s far more than just her story—it’s ours as well. How do you begin to process being told your daughter may not have a meaningful life, nor be normal? What does it mean to have a purpose-filled life, and how do you embrace the challenges that come your way? Her story is our story—a journey of God’s work in all of our lives. And what we learn is that a meaningful life is not about what we know, nor is it what we do – it is about WHO we are in the eyes of our Lord. May this book speak to you as you hear God whisper in your ear His love and affirmation of you. —Tom Thomson, senior vice president of World Help
There is no greater, life changing truth than to know that God not only sees us deeply but loves us unconditionally. The hope we find in this book reminds us that the moments of our greatest pain can be redeemed and used for our good and God’s glory!
—Tauren Wells, Grammy nominated, Sony Music Recording Artist
Book Update
Hey Everyone!
I (Robin) want to give you an update on my book project. I finished the manuscript a couple months ago and sent it to the publisher. I picked WestBow Press to publish it for several reasons. They seemed to have a smooth process, great distribution, but the biggest reason is that they are a sister corporation of Thomas Nelson and Zondervan. Obviously, those names are the best in the business. If the book does well there is potential for one of them to pick it up and run it through their channels as well.
After I sent in the manuscript, it had to go through an initial examination for content. They wanted to make sure it fit their standards for writing and Christian content. I was quite nervous about this process. I tried my hardest during writing to make sure I covered all the details. However, I had not cited or sourced a paper since college (20 years ago). Do you remember how to do a bibliography? Yeah, me neither! Ha!
They came back with 4 areas that needed changes. I needed a couple of my endorsers to send in a permission email. There was a story that I used in the book that they were concerned might be a libel risk. (The person I talked about might not like being in the book) They wanted me to change the story or reach out to him and get his permission. There was no way for that to happen so I was stuck. I really wanted to use the story. Then, something amazing happened. Someone came into my office this week with the exact same situation. I counseled him and then said, “Would you mind if I use your story in my book?” He agreed! So I got a notarized statement giving me permission. Wow!
The publishers were also nervous about a section of a Martin Luther King Jr letter that I used. They said that I had to get official, legal permission from his estate before I used it. Of course, I was quite nervous about this and wondered what it would take. I looked them up online and sent an email explaining the book and portion I needed to use. They were so kind but referred me to their legal representatives in New York. I wrote to them and they had me fill out a long legal form. There was a blank that they would fill out that said “fee_______”. How much would it cost for me to quote MLK? I was so impressed by this. How awesome that it costs to quote someone that has been dead for decades? However, I was quite unsure about if I could afford it. They finally responded that it would cost $150 to use the portion I needed!
The final change that the publisher needed me to do was funny and tough. They said that I used three words that were profanity! ha!! I never dreamed that I would be marked for profanity. The first word was “heck”. HAHAHAHA The second word was “screwed”. Those two words were easy changes. The third word was “retarded”. They said they do not allow that word in their books. I was a bit troubled when I saw this. I wondered if they even read the book of they just used software that scanned the book for certain words. I called them and asked, “Did you actually read the book? Do you know that my daughter was born with a severe disability? Do you think I would ever use that word in a derogatory way?” The man was very kind and said he understood. He would take it up to the next level of management and see if he could get an allowance for it. He sent me an email a few days later saying, “I’m sorry. You can’t use that word. This is coming from Thomas Nelson.” So, I changed it. If you want to check out our thoughts on the word retarded, click on this post.
We now go through another evaluation that is a little more detailed. It is more about structure of the writing and trying to find out if we could improve it from a literary perspective. This is the longest part of the process.
We have been working on the cover in the meantime with Michelle Hagerty, Luke Tharp and Erica (the best critic I have!). Those watercolor images are concepts we are working through for the cover. Icebergs are a big illustration in the book. That pic does NOT do them justice.
We were hoping that the book would release in January, but it is looking like it will be in early spring. The main issue is the holiday delay coming. Oh, but what a good delay that is!
To BE or Not to Be…
This is the second post in a series from my (Robin) new book! Here is an excerpt from chapter 7.
Everything begins to fall apart for Adam and Eve (and the rest of us humans) when they listened to the serpents offering. He tells them that who they are is not good enough. He says that what they have accomplished is not sufficient and He offers them more. Before this temptation, Adam and Eve were content simply being God’s kids. They were not seeking more power or knowledge. They were not even hungry for the actual fruit. However, when the serpent tempted them with more power and knowledge, merely BEING Adam and Eve was not enough. Now they needed to add something to their existence. At this point, people lost their contentment with simply being.
When God begins his path of redemption for humanity, he goes back to the original plan. He identifies a group of humans as “his people.” Starting with Abraham and Sarah, God identifies Israelites as special simply because of WHO they are.
The Lord had said to Abram,
“Leave your native country, your relatives, and your father’s family, and go to the land that I will show you. I will make you into a great nation. I will bless you and make you famous, and you will be a blessing to others. I will bless those who bless you and curse those who treat you with contempt. All the families on earth will be blessed through you” (Genesis 12:1-3).
God tells Abram to leave all that has defined him. He is to leave his homeland and family and be redefined entirely by God. God changes his name from Abram to Abraham to signify the complete identity revolution that is happening. God’s instructions are big, yet they are not complicated. In Genesis 17, God tells Abraham that he will make him the father of multiple nations (v.4). “I will BE your God, and you will BE my people.” The entire covenant is about identity between God and Abraham and his descendants.
From this point forward, the Israelites are known as “God’s people.” They are to be the vehicle for God’s salvation for all people. Through them, God speaks… to the world. Through the Jewish bloodline, God brings a savior that will redeem every broken part of the earth, creature, and person. However, all this meaningfulness rests NOT on the Jews’ ability to save the world. It is entirely reliant on them simply being God’s people and allowing God to work through them. If you have studied Israel’s plight through history, you know they have failed countless times to represent God. However, God never abandons the plan. God knows that their identity of being his people is enough.
If we fast forward to the beginning of the New Testament, we see a God who continues to love the world deeply, yet his people have lost their identity. There is so much confusion and turmoil. This text says it so clearly,
“the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time” (Romans 8:21-22 NLT).
Well aware of this groaning, God is about to transform everything and everyone when he enters the world as one of us, Jesus, the Son of God. Through Jesus, God will renew the earth literally from the ground up. Every creature, plant, and person can participate and reflect God’s beauty. This movement will remain in the same pattern as every other move of God. That is, God will identify his people.
We see this taking shape in the New Testament when John baptizes Jesus. As Jesus comes out of the waters of baptism, a voice from heaven says, “…This is my dearly loved Son, who brings me great joy” Matthew 3:17 (NLT). At this point, Jesus had not taught a sermon, healed a blind eye, and had not died for the sins of the world. He was God’s son and brought great joy BEFORE he did the massive work of salvation. As he leaves the Jordan River that day, he begins his public ministry standing on the foundation of BEING someone and belonging to someone. All of his meaning (and obedience) stems from his identity.
Unfortunately, most of us do the opposite. We try to find our identity by what we do, what we like/dislike, how we dress, what groups we relate to, etc. We do good, obedient things to be in approved by God. We want His favor, so we exert an excessive amount of time and energy striving to be in good standing with God. When we are nailing it as a Christian, we feel terrific about ourselves. We feel like we are in good standing with God and therefore His son or daughter. When we are doing well, we are tempted to take the credit for our good behavior and we look down on those who are not holding their end of the bargain. In reverse, when we are struggling to live a righteous life with constant mess-ups, we regularly beat ourselves up. We live in guilt and explore ways to pay penance for our sin. In these moments, we feel God is far from us, and we do not deserve to be His son or daughter, and we feel less meaningful.
I would love to hear from you!
What kind of activities/actions make you feel important?
Who in life makes you feel the most valuable? How do they do that?
Who is the expert on life’s meaning?
This post is the first in a series of posts from my (Robin) upcoming book. Release date is early 2020.
This excerpt is from Chapter 6:
Kennady spent the six weeks in the Neonatal Intensive Care Unit (NICU) after she was born including Christmas, New Year’s Day, and the day the University of Texas played the BIG 12 Championship. (Those are big days in Austin, TX!) She had tubes hooked up everywhere. Machines were blinking stats to hospital staff. Nurses were walking around, and there were probably 30 other babies in cribs very close by. We had to wear gowns and face masks to protect the infants from potential illness. Fortunately, each bed had a rocking chair, so at least one parent could sit and rock their baby.
The NICU is not known for its homey atmosphere or welcoming décor. Unfortunately, it is either dark and cold or fluorescent bright white and cold. Either way, it is lousy lighting and chilly. We spent hours in those cold rooms feeding her a bottle, rocking her to sleep, singing songs, and introducing her to new friends and family one person at a time. Visitors had to put on a gown and a face mask and then scrub their hands for 3 minutes before winding through the cribs to see our little miracle.
Christmas morning, marked our thirtieth day in the NICU. Instead of sitting around a beautiful tree and opening gifts with extended family, Erica and I dressed Kennady as a little red elf. We sat around her hospital crib and thought of what life would be like when we left the hospital. We had ridden the roller coaster of emotion. Our daughter is born! What a miracle! She has a horrible diagnosis. She is recovering well! She looks different than healthy babies. We were up and down. Up and down.
One unforgettable day I was visiting with Kennady by her crib. At the foot of the bed was a clipboard of doctor notes. Back in 2001, it was typical to leave a chart at the crib so doctors and nurses on other shifts can stay apprised of the patient’s situation. However, on this day, my sideways glance caught the last line of the progress report. In the doctor’s hand, it read, the parents understand that there is no chance of their daughter having a meaningful life.
The bang of those words rang in my mind like a gavel strike. Judgment passed over my daughter’s entire life with a short yet sweeping sentence. I was utterly crushed and seconds later angry. I thought, My daughter has meant more to me in the last two days than you will ever mean to me. I was furious. The indifference! The audacity! Suddenly his credentials, his education, his years of training were meaningless to me, just as my daughter was meaningless to him.
For ten years, I thought about that moment at the crib and always wanted to go look up Kennady’s medical records to see if they reflect that statement still. I wanted proof. I had almost convinced myself that I misread it. Undoubtedly, the transcriber edited the comment to read more appropriately or medically correct. In fact, one time we mentioned it to our palliative care doctor and she could not believe that a doctor said that.
So, in early 2011, I went through the process of accessing Kennady’s records. They told me that it would take several weeks to get the documents and that I could come to the hospital to find the correct record. Kennady was in the hospital 42 days during that period. You can imagine how many pages of records that included. I finally received the call that the documents were ready, and I scheduled an appointment to review them.
Erica dropped me off at the front door of the hospital and waited outside for me to “run in and get them.” My emotions began to swell as I walked the same stark halls a decade before. I was nervous and excited all at the same time. The clerk took a few minutes and then returned with a large folder of documents. It was about four inches thick. Fortunately, the information I was looking for was close to the top. I turned the 6th page of records and saw this:
Tears fell down my face. I couldn’t believe it. There it was. First of all, the statement in the report was incorrect. Erica and I never expressed the understanding that our daughter’s life was meaningless. That is what seemed so disturbing. It was like they were saying we agreed with them. Wrong. False. Untrue.
At this point, I think it is important that I clarify a few things. The doctors and nurses did a phenomenal job physically caring for our daughter in the NICU. We are incredibly grateful for their hard work. We also do not feel like the doctor had a vendetta or was intentionally trying to be mean in his assessment of Kennady’s life. It merely was a clear sign that our doctor, like many others, was tangled in the entrapping lies of society that define meaning with skewed and perverted definitions.
I stood up from the table, slid the big stack of papers back, and asked the attendant to make a copy of that one piece of paper. I am sure that the rest of the documents contained valuable information about Kennady’s care; however, at this point, all that information seemed worthless. The attendant graciously made a copy, and I walked out of the office. I trekked back down the stark halls. I made it back to the mini-van at the hospital entrance. The three kids were in the van with Erica, laughing and talking and in their world. I got in the passenger door and just sat there. Erica said, “Well, what did you find?”
To which, I flatly replied, “It was there,” and then handed her the copy.
Erica and I often wondered what our daughter would have to accomplish before the doctor would deem her meaningful. If she could walk, would she cross the threshold of meaning? If she was able to form words or write sentences, would she be meaningful? Would she have a high market value if she were able to go to college or get married?
I would love to hear from you!
Please comment/respond to the questions below and be a part of the conversation.
Have you ever wrestled with someone else’s declaration over you?
How has that affected the way you live and see yourself?
How have you been successful at redefining yourself?
New Book Coming!
I (Robin) am so excited to let you know that I just finished a round of edits on a new book coming out very soon! Several years back, I felt compelled to write a book. Of course, I didn’t know where to start, but I knew that it would be centered around our daughter’s life. Our journey with her has taught us so many lesson and encouraged 1000s of people. There was no question in my mind that God was calling us to get this into book form.
For several years, I toyed around with different ideas. We started blogging and trying to process all the thoughts, emotions, feelings, and theology that has come out over the last 17 years. I could never really nail down a concise message until the fall of 2016. I was speaking at a friend’s church in Austin, and he asked me to use our story with a particular verse in the Bible. John 5 talks about a crippled man who was asked by Jesus, “Would you like to be made whole?” As I began to dig into this passage and look at our daughter’s life, it was clear that she was a shinning example of someone who was whole. I knew that modern society would be shocked to hear this. How could she be whole? What made her whole? How did that play out in everyday life?
After I spoke that Sunday, I got a great response from the congregation (a very white, well-off crowd). Ha! Then, over the next 2 years, I did a lot of international travel and spoke the same message to people in Mexico, Cuba, Guatemala, and India. Typically, I really wrestle with speaking over seas because of the cultural differences. It is intimidating to figure out how to relate to people that are so completely different. However, I decided to simply give the same message using my daughter’s story. I didn’t change anything. In every country I got the same result. People were deeply impacted with the simple message of being made whole. While in Cuba I clearly heard God speak to me, “This is the message of the book. Write this message in book form and get it out to the world.”
Of course I went to some agents and publishers to see what the interest would be. The new nature of publishing is that you need 10s of 1000s of followers on social media to get a book deal. That wasn’t me! What should I do? I wrestled with this quite a bit and got another clear message from God, “I didn’t tell you to get a book deal or that it would sell a lot of copies. I told you to write a book and publish it.” Wow! What a release. From that point, I simply made the decision to be faithful in the process. I would write the book and self-publish. I finished the first draft in early 2018. A dear friend of mine had just had his book edited. I asked who was his editor and he introduced me to Deborah (will share more about that some other day). Deborah and I have been working over the last year to finish this round of tough edits. It is such a difficult and long process. Today, we finished!
Now, I have to connect with the publisher and move towards the final stages. I wanted you all to know about this first hand because of several reason: #1 – I want you to be the first to get a copy. #2 Before that happens, I want to share with you portions of the book. I would love your feedback. How you respond to different portions will let me know how it resonates and how I can market it to folks. I will be posting sections to our blog over the next few weeks. Be looking for it! I would love to hear your thoughts on the book!
Bears May Eat Me
I (Erica) took a little trip, two weeks ago, to get some downtime for myself.
It was overdue. Robin and I talked about me leaving for a few days, to which I said, “I need to get out of here and not have anyone ask me for anything!”, to which he said, “You don’t have to act like you don’t like us!”
I LOVE my family. They are MY people, they see me at my worst and love me still. We trust each other, celebrate each other, cry with each other….but we also need our time alone.
So, I concocted a plan on Saturday, made reservations at an air b-n-b for Monday night, and took off driving, to the beautiful state of New Mexico.
I didn’t have much of a plan except for leaving town, eating, driving, and sleeping. I arrived in the quaint town of Taos, NM Monday night just as the sun was setting on the mesa.
It was beautiful. ..The cool breeze… dry mountain air…and slow pace.
I woke up Tuesday morning and decided to take a little road trip to see our first home we ever purchased (in Questa – 20 miles north of Taos). It was so sweet and nostalgic taking a drive down memory lane. Robin and I spent our first couple of years as newlyweds in the mountains, teaching ski school, working desk jobs, being a line cook, detailing cars, all while eating pizza and playing video games. It was a magical time for us.
That afternoon I headed up to Taos Ski Valley to eat a burger at Tim’s, and hike up to Williams Lake.
The weather was perfect and the mountains were stunning. I got my belly full and started my short 2 mile hike up the trail.
It was about the time I got to the trailhead and saw the signs “Do NOT FEED the wildlife”, which indicated that there may be bear, mountain lions, or other small animals, that I was reminded of my irrational fear of being eaten by a bear.
Now, you may laugh at this, but it is true. I am a healing hypochondriac, as well as someone who has an overactive imagination about animals desiring to attack me…and then eat me.
Meanwhile on Instagram, with no-one able to read my internal thoughts, and only able to see the beautiful, fun pictures I was posting. I was having discussions with myself about how I would fight off any animal that may come at me with my pepper spray and banging my metal water bottle (likely, while running downhill screaming). I am sure the pictures made it look like I didn’t have a care in the world!
Here I am hiking up the trail, and with each person I pass I am so thankful that not one is telling me there is a bear up ahead! (or running downhill screaming that they are being chased by a bear.) This was encouraging!
About half way up the trail I realize that I have not quite acclimated to the altitude. This “quick” two mile hike was going to take longer, and require more effort than I imagined. I would hike a bit, then stop and take a drink of water and catch my breath. I pretended that I wasn’t about to pass out, as friendly hikers walked by.
As the hike went on, the number of hikers was decreasing and I kept thinking I was almost to the lake. Maybe I would actually make it! So I began to pray “Lord, just let me see one more person (bear bait)”, and sure enough, here would come one or two more people!
Finally, as I was sure I was almost to the lake, I saw two people coming toward me and asked them casually, “The lake isn’t too much farther, is it?” (PLEASE, LORD, let it be close). They said “It’s only about 10-15 minutes up ahead”….. OH! GREAT! Just 10-15 minutes MORE of being potential bear bait!
Throughout my hike I would constantly speak truth to my fear, by stating that “bear attacks are rare…mountain lion attacks are rare”, “animals are more afraid of us, than we are of them”, “Jennifer Pharr -Davis has hiked thousands and thousands of miles ALONE and not been attacked, so surely I will be fine!”
I finally made it to the lake, admiring the scenery and taking a quick selfie, then saying to myself, “Did that! Check! And, I didn’t even see one bear!… yet…”
I stood for a few minutes taking in the beauty, then spotted a family hiking and thought, “OK, I don’t want to be behind them on the trail, so I will head back down, plus, they will make good bear bait!” (horrible, I know)
As I headed back down the mountain, I was reminded of the truth of my faith journey: The truth that if this life is not the end, then a bear attacking me and potentially ending my life… is not the end.
In the Bible, there are so many stories of God’s people forgetting what he has done for them, and what God promises he will do. In Exodus 11:7, God tells of delivering his people from slavery. He went so far as to silence every dog in Egypt. This kept coming to mind as I was walking.
God is concerned about every detail of our life.
In my morning devotional by Paul David Tripp, “New Morning Mercies”, he says, “In the life of the believer, fear of weakness amounts to God-forgetfulness. Timidity is a failure to remember the promises of the gospel…Giving way to temptation is overlooking the empowering presence of the Holy Spirit.”
It hit me like a ton of bricks. How powerful is God! His presence transforms our lives! Each time I was afraid on my hike, I would speak truth, but it wasn’t until I began the hike down, that the gospel began to settle in my heart.
As I hiked down the trail, I took my time and really focused on the truth that God was here in that moment with me, that he was indeed over every moment, and that I could rest in THAT.
I got almost all the way down the mountain and stopped at a beautiful roaring stream.
I decided to sit down and pull out my book to read for a bit. It was such a blissfully peaceful moment.
My fears were laid down in trust, and the peace came to just enjoy what all was surrounding me.
After reading for a bit, I packed up and headed back to my quiet air b-n-b, exhausted and ready for bed.
Ceiling at my BNB!
This day for me was so good. It was a reminder to not live life bound by fear of the “what if’s”, and to rest in the gospel…pure and simple.
If I had listened to the fear in my mind, I never would have left the comfort of my vehicle or a safe restaurant to enjoy the nature that is so deeply renewing for me.
What is it that you need to say “no” to, to be able to say “yes” to peace and joy? I would love to hear from you!
What People are Saying