by robinsteele1@gmail.com | Jun 20, 2016 | Choices, How to deal with pain
Retarded is not a bad word.
re·tard·ed
rəˈtärdəd/
adjective *dated offensive*
less advanced in mental, physical, or social development than is usual for one’s age.
“Special Needs” is a more recent term (that has replaced retarded, along with many others) to describe anyone with more complex needs than the average person, health-wise or mentally.
My daughter falls into this category.
The other day I was at church, surrounded by people I know and love. One of the ladies began making fun of someone who was “special.” I was caught so off guard that I thought, “Surely she is meaning that in some other way. Surely I misunderstood.”
I am sure she had no idea the power of the words her heart was speaking. I’m sure that she is so numb to this way of operating that it never occurred to her that she was making fun of a group of people that included my child.
I got a message later that day from another lady who was in the room, apologizing for any hurt those words may have carried into my heart. She followed the message with a proposal to change “special needs” to “exceptional needs.”
The problem has never been the word. Although I so very much appreciate the other lady reaching out to me in concern and care, it put a spotlight on the real issue.
If you were to describe my daughter, retarded or any of these words, would be an appropriate definition.
How many times are we going to change the word?
Retarded became “dated and offensive.”
Special is becoming “dated and offensive.”
The real issue is our hearts.
How do you view people that are not like you?
Do you use the term to demean them?
Do you use it to kindly describe, or do you use the term to tear them down and make others feel less than you?
Do you use it to make yourself look better?
Do you use it to be hateful to someone else, to point out their flaws?
Do you use the term jokingly, without thought of the people you are speaking of?
The solution never has and never will be new words. Someone will just demean the next word that is presented. The problem is in the heart.
Be a voice for good. Speak up for those who can’t speak. Gently remind others that their words are powerful. Speak truth, not hurt.
We are called to love everyone.
Romans 13:9 “love your neighbor as yourself”
+Erica Steele
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by robinsteele1@gmail.com | Aug 8, 2015 | Choices, How to deal with pain
How Do We Become Whole?
Here are the message notes from Robin’s talk at Life Austin. It is a message based on John 5:1-10 when Jesus made a man ‘whole’. You can listen to the podcast here.
John 5:1 After this there was a feast of the Jews; and Jesus went up to Jerusalem. 2 Now there is at Jerusalem by the sheep market a pool, which is called in the Hebrew tongue Bethesda, having five porches. 3 In these lay a great multitude of impotent folk, of blind, halt, withered, waiting for the moving of the water. 4 For an angel went down at a certain season into the pool, and troubled the water: whosoever then first after the troubling of the water stepped in was made whole of whatsoever disease he had. 5 And a certain man was there, which had an infirmity thirty and eight years. 6 When Jesus saw him lie, and knew that he had been now a long time in that case, he saith unto him, Wilt thou be made whole?
Jesus is not just saying, “would you like to change this or that”, but “would you like for your body, soul, and spirit to reflect the glory of God?”
What would that look like? Our temptation is to believe that wholeness means success at the job, no more fighting with the spouse, no more diabetes or chrones disease, no more fat. Teenagers would say no more acne, no more tests, no more pressure. No more Donald Trump. 🙂
Most of us, in our more honest moments, will admit there are deep layers beneath our day-to-day awareness.
Icebergs are a great analogy for this concept. 
Only 10 percent of an iceberg is visible to the eye. This 10 percent represents the visible changes we make that others can see. However, our soul and spirit reside under the surface and actually make up a bigger portion of ‘who we are’ than the small percent that everyone sees on the outside.
If we spend all of our time working on or thinking about the 10 percent, we will starve the most important parts of our makeup.
We find wholeness from Christ when we surrender our entirety to him. We often don’t do this on our own, but it takes a serious life-changing experience to wake us up and focus on the unseen.
Pete Scazzero in his book, Emotionally Healthy Spirituality says:
“When we deny our pain, losses and feelings year after year, we become less and less human. We transform slowly into empty shells with smiley faces painted on them. But when I begin to allow myself to feel a wider range of emotions, including sadness, depression, fear and anger, a revolution in my spirituality is unleashed.”
Jesus wants to make you whole! Jesus wants to make you whole! Beginning today!
In 2001, Erica and I were expecting our first baby. We were so excited! We were dreaming about all the things he or she would do and become. Where would she go to school? What would her profession be? How would she serve the kingdom of God?
As I said earlier, I was a children’s pastor on staff with Pastor Randy. We were expecting nothing but the best. We had grown up in church and knew God. Loved God. Worshiped God faithfully.
At 7 months, we had our first sonogram. And the sonographer told us that she wasn’t seeing something important and gave us a referral to see a specialist later that afternoon.
I left the appointment, went back to church and walked into Pastor Randy’s office and said, “They said there was a complication, but I don’t think it is any big deal.” We prayed and then later that day we went to Dr. Berry’s office. He confirmed that our daughter had a profound disability. That “thing” they couldn’t see was her brain. She had severe hydrocephalus and the outcome was not going to be good. She would be mentally retarded, deaf, possibly blind, short life span. Dr. Berry was so nice to us. I pinched myself. I wanted to simply start the day over again. We went home and cried and prayed and talked to family and cried and prayed and talked to family.
Every time we went back for a check up the prognosis was worse. Eight weeks later, we had a scheduled C-section, and our beautiful daughter was born.
The next day, Kennady had an MRI to see the extent of her condition. The brain surgeon walked in that dark room and said, “Your daughter’s condition is worse than we thought, not only does she have hydrocephalus, but she also has Alobar Holoprosencephaly. Her brain did not divide into two halves. She will probably live between 6 months and a year. We can put a shunt in to relieve some of the pain but it will not change her condition. You can simply take her home and enjoy her.” We decided quickly to do the surgery!
We wanted to give Kennady every chance possible to defy the odds. The surgery went well. Two or three days later, we were sitting at her bedside in the ICU. I happened to look down at the end of the bed and see the doctors notes for the next shift. He had scribbled in the notes, “The parents know that their daughter will not have a meaningful life.”
When I read that statement, anger welled up in me. I wanted to lay hands on that doctor but not in a pastoral way, but sort of a Chuck Norris way.
- Who defines Meaning? Who defines Wholeness?
- How do we determine what is meaningful?
- How do we become whole?
I’m happy to say that in a couple of months Kennady will be turning 14 years old!
She has a lot of differences than us. She is unable to walk or talk. She is tube fed and requires someone to care for her all her needs. She is the happiest 8th grader you have ever seen in a wheelchair. She speaks to us with a contagious smile. Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store.
Look at that picture and tell me if Kennady is meaningful. Does she have meaning? Could she be whole if she never walks or talks? Could she be valuable if she never produces anything. If she never does anything?
In the last 13 years, we have found this about being whole.
Wholeness is about BEING.
Kennady is awesome at being a “human being”. She is awful at being a human doing. Most of us (because we can do some things really well) think we get our value from our acquisitions, our accomplishments or production.
HERE ARE 3 PRINCIPLES OF BEING WHOLE
(more…)
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by robinsteele1@gmail.com | May 25, 2015 | Choices, hospital, How to deal with pain
When is enough…enough? What do we do when we can’t go any further?
Yesterday, I saw a post on Facebook about me. That is always weird. Seeing someone else post something about you.
A lifelong friend posted a very kind message on my mom’s Facebook page:
Kathy, lifting up your children in prayer now….I saw where Sis Phillips called them her “Heroes”… and that they are….Lord, Jesus, enough is enough? Don’t mean to question, but just don’t understand….please hold these kids close, healing, safety, protection, In Your Precious Name, JESUS!
What is she talking about? A lot has gone on in the last 8 days. I will give you some bullet points. 🙂
- 8 days ago it rained so much that we had to cancel our Sunday morning church service. The bridge near our church flooded.
- Tuesday and Wednesday, I drove to Houston for a ministry board meeting.
- Thursday, Kennady (our daughter) had an 8 hour back surgery. She had her entire spine fused.
- Saturday, our town suffered a 500 year flood that destroy over 300 homes and damaged 200 more. Roads were blocked all over town and we had to cancel our weekend Services for a second consecutive week.
This is our house. The water rose to the edge of those 2 yellow trees!
The Facebook post asked a great question, “enough is enough?”. When is enough…enough?
The Bible does say, “He won’t give you more than you can handle.” Doesn’t it? Actually, it doesn’t really say it like that. Here is what 1 Corinthians 10 says:
13 The temptations in your life are no different from what others experience. And God is faithful. He will not allow the temptation to be more than you can stand. When you are tempted, he will show you a way out so that you can endure. (NLT)
The key word in the passage is temptation. You are tempted to not trust God. These stressful situations tempt you to trust in other things instead of God’s provision, protection, and satisfaction. (sorry, couldn’t think of another ‘p’ word)
The answer to the question of “when is enough…enough?”, is Jesus. Jesus is the answer. Jesus is always “enough”. No matter what we go through, Jesus is able to handle it. We are put to the test through temptation: Do we trust that Jesus can get us through this one, and this one, and this one, and this one. Even when the bulleted list grows and grows, we have a choice. Do we trust him or not? If we are struggling through something, then we look to Jesus for our solution. He always has a way to get us through.
Yeah, but how does that work?
We need:
-
Uncle Ed has been praying for Kennady and loving on her for 13 years.
PEOPLE in our lives to keep us focused on Jesus when the situation is distracting. We need people to care for us and provide for our needs. We need people to speak the truth of the Gospel when all we can hear are lies. In the local church, Jesus provides PEOPLE to get us through it. We have had PEOPLE visiting us that were a part of our church 13 years ago. When you become family in a church, it makes a huge difference. Find a church. Lock in and don’t leave. You will need them someday in a crisis. Not only do they provide food, shelter and hugs, but they also provide prayer and counsel. They remind you that Jesus cares, and will heal.
- PATTERNS in our life to keep us anchored when the waves toss to and fro. Locking into a PATTERN of reading scripture, praying and giving (time, talent, and treasure) pays off big time when you go through tough times. Jesus responded to temptation by quoting scripture. He knew scripture because of his life PATTERN of reciting, reading, and listening to scripture in the tabernacle.
Jesus supernaturally shows up in these people and patterns. They are the canvas on which God draws his masterpiece.
We are extremely grateful to all those who have been the PEOPLE in our life the past week. We love you and can’t wait to be your PEOPLE.
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by robinsteele1@gmail.com | May 20, 2015 | Choices, How to deal with pain
I (Erica) am sure I am not the first person to have this revelation.
However, it did occur to me after the last “attempted” surgery, that life is like UNO.
You know how it goes. You have an awesome hand, you are down to the last 2 cards, your on the right color (red), and you are playing your way to victory.
Then, you lay your card down and proudly declare “UNO”!
The player beside you puts down their card, and then, to your shock and despair, the next player lays down the dreaded WILD card. And to add injury to insult, they call out that the color has changed to blue!
Did they not realize I only had ONE MORE RED CARD!!! Seriously, this was the hand of all hands, game of all games, played…almost perfectly.
Then, just when you think the insult is over…oh no, the player before you lays down the most dreaded, draw 4. UUUUUGGGGHHHH!
At this point you might as well just throw a skip, reverse and draw 2 while your at it.
A couple of weeks, Kennady’s surgery surgery didn’t go as planned.
We had done all the prep to get ready for the surgery. We had checked every box, made sure we did all the treatments, got all the scans, checked in early (which is a miracle). It was the right hand, played well and ready to lay down the final card on this scoliosis, and declare the game won.
But life threw us a WILD card and changed the game up a bit.
We were disappointed to say the least. The build up emotionally and physically to this type of surgery takes a toll on us.
These are the times life feels like a game of UNO.
You do everything you can to prepare, only to have your plans thwarted.
We are so busy planning out how the game will be played, we forget that the most important moment is here and now. It’s really all we have. We can’t change the past or predict the future.
We may go back tomorrow morning and have a different card thrown at us. But today, I have my girl with me, happy and smiling. I want to make a choice to be in this moment, being fully present with her and the ones I love. So that all that God has for me is able to sink in deep to my soul. Washing away the anxiety, the “what if’s”.
The problem we face daily is learning to be in this moment.
Not treating life as a game that has to be conquered, but learning to live in the moment.
As Ann Voskamp says in her One Thousand Gifts Devotional, “I weigh the moment down with full attention here”.
What if being present, in body, mind and spirit is all that is required of us to live this life fully? Removing the fear of the “WILD” card. The fear of the unknown that we think may sabotage our great victory.
It’s often that lesson that we are learning, if we are open to it.
God is so good in all of this. He holds my every moment, faithful to strengthen my heart when I don’t understand.
Tomorrow morning will come, and we will trust that his grace is enough.
UPDATE (5/25/15)
The day after this blog post, May 21st, Kennady had a successful back surgery. She is currently recovering very well. We really appreciate all of your prayers.
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by robinsteele1@gmail.com | Oct 27, 2014 | Choices, hospital, How to deal with pain
What friend is there for you? Who are you there for?
This is an unpolished/honest post about our feelings.
Ok, here you go… We struggle telling people about Kennady’s condition. We don’t want to burden them with difficult news. We don’t want to sound weak.
There is a problem with both of those statements.
People ask us, “How is Kennady doing?” We are so thankful that people care! We are so thankful that they ask!
When we haven’t seen people in years, they ask wondering if she has progressed in ability. Can she walk now? Can she talk now? Is she more developed? Just the other day, a lady asked how Kennady was doing. We said, “She is doing good. She is healthy and strong.” The lady then asked, “Can she say anything?” We replied, “Nah, she really can’t say anything.” Then the lady added, “She can’t even say hello or hi?” We said, “No, she can’t even say hello.” TRUE STORY. That happened about 2 months ago.
When Kennady has medical procedures, people want to know how they are going. The difficulty is when things don’t go well. The procedure didn’t work. The surgery has to be redone. People of faith want answers that are positive. We believe that God is able and we eagerly wait for the answer to be positive after prayer.
What we continue to find in our journey with Kennady is that the answer is RARELY what we think it will be. It is a good answer. Because God is good. It is just different than we expected and it has some difficulty attached to it.
Here we are with another major surgery coming on Thursday.
Before, I (Robin), post something on the blog or Facebook about another challenge or surgery, I wonder: Do people really want to hear this again? Are they tired of hearing our problems? At some point, will people check out because they are tired? How many people are in for the long haul?
I guess we have to discover these answers through the process. Who is in? Who is all in? Who are the friends?
Isn’t that true for anyone or any circumstance? Some people are out and some people are in. Our true friends rise to the occasion. They are not conditional. Their relationship is not based on what they get out of it, but what they can give.
Then, all of the sudden our thinking gets turned on its proverbial ear. Who have I abandoned because their situation didn’t line up with my liking? Their path was not beneficial to me. Their pace was wearing me out. #conviction
I pray that I can be a friend in the thick and thin. I pray God surrounds us with just enough friends to carry us in the difficult times. We trust that he will.
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by robinsteele1@gmail.com | Aug 25, 2014 | Choices, How to deal with pain, Uncategorized
Our boys are riding their bikes to school on Monday. They will walk into third and fifth grade. Kennady will be taking the bus to 7th grade (Simon Junior High). It is here already. We have so many questions as this day approaches.
Did we maximize the summer?
Did we do enough fun stuff?
Did we waste the time off?
I have an interesting idea: We should be more “summer-like” all year ’round.
You should really be more unproductive on a regular basis.
I feel confident in saying that to 99% of Americans. At least, you should try to be unproductive. I think sometimes we try so hard to be productive that we end up burning out and not being productive at all.
God was rolling along, creating things, saying they were good when, after 6 days, he stops and decides to do nothing productive. He rested. Then, when the law was being given to his people, he makes one of the big ten laws, “Remember the Sabbath day, to keep it holy.” Exodus 20:8
It must be a pretty big deal if it made the top ten list.
I always thought that keeping the Sabbath meant that I was supposed to go to church every Sunday. It was like, “Remember to go to church every Sunday and don’t forget it! Make sure you go!” However, the Sabbath is more and better than simply going to church every weekend. It can and should include gathering with other believers to worship God, but it will include other ‘non’-activities.
Here is my take: “Remembering the Sabbath, to keep it holy” means: Don’t forget to keep one seventh of your life unproductive. One day a week, intentionally do nothing that is of productive value. By resting one day of the week, you are communicating to God that you do not believe you are the source of accomplishment in your life. You are worshipping God by saying, “I trust that you are in control of everything. I have worked hard this week and now can confidently rest because I believe/trust that you, Jesus, are in ultimate control. All the loose ends from my task list are not going to sink my job, me, or the world. I can be unproductive today because your word says,
“…there is a special rest still waiting for the people of God. For all who have entered into God’s rest have rested from their labors, just as God did after creating the world.” Hebrews 4
Last week, I went on a cruise with around 30 other folks from our church. The second day on the boat, we all gathered in a room for a group meeting. They weren’t sure what to expect. Was I going to preach, teach, have an altar call? (Maybe I should have after Karaoke the night before.) We all sat down and I led them in a short discussion about doing nothing on the boat all week. I told them that I didn’t want them to even think about anything productive. Don’t read a book unless it is for fun, don’t write notes for when you get back on land, don’t do work on the laptop, try your hardest to do…nothing. Nothing but have a good time. We were going to rest. We were going to remember a Sabbath to keep it holy.
I told them that when we left the boat we were going to be spiritually and emotionally higher than when we got on the boat. We were going to be more spiritually healthy. (Probably not physically healthy because we were going to eat around 10,000 calories a day). We were going to be stronger when we left. Not because we had an encounter or specific moment on the cruise, but because we were being obedient and faithful to God by….doing nothing productive. Resting. Trusting that God had everything under control back on land.
As Americans we aren’t conditioned to think this way. We are geared to produce at any expense. We are trying to eliminate all angles that slow us down or hinder growth. We are wired to never take a break. Elizabeth was on the boat with us. She was so relieved to hear the message that day. She told me, “I am always trying to find ways to be productive while I’m resting. I feel guilty simply doing nothing and feel like I am expected to always be productive.”
Two lumberjacks were in competition for several hours. They were trying to see who could chop the most wood. One relentlessly chopped without a break. The other took breaks every thirty minutes. The one who took breaks won. When asked how he won while taking breaks, he said, “Every time I took a break, I sharpened my axe.”
While we were on the boat, I challenged our people to think about sharpening their axe. Every time the temptation came to disobey God (and be productive) use that as an opportunity to say a short prayer. Those are testing moments. Do I trust God’s plan of rest? Do I trust his reward of obedience. Work hard for 6/7ths of your life and then rest hard for 1/7th of your life. Instead of being so balanced that you are always trying to work and always trying to rest, think of it being more of a pendulum. When it is time to work, give it all you got. Then, when it is time to rest, give it all you got.
Go sharpen your axe!
What has your rest been like lately?
Do you struggle to find rest?
What do you do to make sure you are following God’s plan for a regular Sabbath?
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