by robinsteele1@gmail.com | Jun 5, 2020 | Grandparents, How to deal with pain
“Well, she didn’t really ‘graduate’,” he replied with a smirk.
That was the phrase that brought our graduation celebration to an abrupt halt. Literally, brought us to tears and anger. It came from a close family member while telling him about Kennady’s latest miracle of going through 15 years of the public school system. Life is hard enough without words (from family members) making it harder. Yes, we know that she didn’t get a 4.0. Yes, we know that she didn’t get first chair in the band. She actually failed at accomplishing many of the goals we set in all of those ARD meetings. What does all of that mean?
The main issue with these words is that they tie directly back to the words of the doctor a few days after Kennady was born. The doctor’s words were, “their daughter will not have a meaningful life.” This recent proclamation was, “she didn’t really graduate.” What this really says is, “Her finishing school doesn’t really matter.” or “She didn’t really do anything.” DUH! Do we really need to hear that? As parents, we are actually experts on every detail of Kennady’s life. We know exactly what she does or does not do.
I’m sure that everyone reading this blog will jump to our defense and say that these statements are harsh. We love that you will support us in this moment. We do benefit from your affirmation.
But… let’s stop for a second and look deeper below the surface…
The doctor should not have used those words right after birth. This family member should not have used these words last week. However, both are a symbol of how humans view what matters. These words show something that we all wrestle with internally. How will I matter? How can my life mean something? What do I actually have to do to have other people say that I matter? The answer: It depends on who you ask. The answer is subject to who is answering… who is saying the words.
Who is saying the words? Whose words mean the most?
It is really tough when the words come so fast and so often from people we are supposed to trust (doctors) and respect (family). Yet, we still have a choice. When people’s words anger, sadden, or confuse us, we have to choose if we will receive and believe them. We are faced with the brutal process of fighting through the emotion and finding the truth. Are the words true? Sometimes tough words are true and we must accept them.
However, we often accept lies. We hear them, believe them, and live our life based on them. The only way to pierce that darkness is with a sword. There is a sword available that is super sharp, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires. Nothing in all creation is hidden from God. Everything is naked and exposed before his eyes, and he is the one to whom we are accountable. The sword is THE Word. (Hebrews 4:11-12 NLT)
The only way to combat ugly words is with THE Word. The Bible says that “the Word” has existed from the very beginning, nothing was created except through him. The Word gives LIFE and LIGHT to everything and everyone. The Word brings light in the darkness and the darkness can never extinguish it. (John 1:1-5 NLT)
The Word that the Bible talks about includes the words of the actual Bible, but The Word is more than that. The Word is Jesus. Reading and meditating on the words of the Bible introduces us to the author. The Word is eternal and absolute. We can stand on this firm foundation. We hide under him. We can weather the storm with him. If things in this life are troubling and seemingly impossible, his Word will be the final word.
Who do you know that needs The Word today? Not a word that will judge or condemn, but a word that will bring light and life. Let’s pray for them. Let’s listen to them. Let’s hold them.
Let’s BE THE Word that they need to hear. Let our words heal.
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by robinsteele1@gmail.com | Jun 2, 2020 | Uncategorized
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:
Kennady’s future plans are to continue inspiring people with her quiet and steady presence…. Pointing people to Jesus’ love and acceptance no matter what you are able to accomplish.
Seems like a worthwhile goal.
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by robinsteele1@gmail.com | May 9, 2020 | Uncategorized
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?
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by robinsteele1@gmail.com | Mar 6, 2020 | Book, hospital
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…
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by robinsteele1@gmail.com | Feb 14, 2020 | Book
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!
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What People are Saying