Get to know us. The messy, funny, faithful Steele Family! From marriage, kids, faith in God, difficult diagnoses, severe food allergies, pastoring a church, trying to live healthy, the list goes on and on.
Retarded is not a bad word.
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”
I (Robin) was once again asked by Texas Alliance for Life testify before the Texas Senate’s Committee on Health and Human Services. They are considering a bill that will close the door for ‘wrongful birth’ lawsuits. In other words, parents can sue doctors, nurses, hospitals (any medical person or place) because the parent wasn’t notified of their child’s disability and would have aborted if they would have known. They can sue because their child was ‘wrongfully born’. This is what I read before them today that supports giving anyone and everyone the right to life:
Hello, My name is Robin Steele from San Marcos, TX. I am speaking in favor eliminating the cause of action called “Wrongful Birth”. My wife, Erica, and I were expecting our first child in September 2001. When had our first sonogram at 30 weeks of pregnancy, all our dreams and visions for our child came to a crashing halt. Our daughter’s brain was almost non-existent. She was diagnosed with profound hydrocephalus. “Your daughter might not be born alive or live very long after birth. She could possibly be blind, deaf, and severely disabled. Most likely, there will be learning disabilities and mental retardation.”
We were given two options. C-section at 38 weeks or a late term abortion out of state
Kennady was born November 24, 2001. After birth a MRI revealed that her condition was actually much worse than they originally thought. She had Alobar Holoprosencephaly. The brain surgeon told us she could be expected to live anywhere from 6 months to two years (if she was lucky).
Kennady celebrated her 14th year birthday in November. She is unable to walk or talk, She is unable to sit up or eat on her own. However, She is the happiest seventh grader you have ever seen in a wheelchair. She speaks volumes 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.
Suing a medical professional because our Kennady was born with a disability is like suing CBS because the Panthers lost the Superbowl….as if the network had responsibility in the loss. If all odds are against the our favorite team and it looks as though they will lose, the team will still want to play and give it their best. The game is really up to the team. The disability and chance for life is truly owned by the child. It is his or her right to have a chance at life to live or die naturally. Who are we to usurp our authority into a situation where only God owns the rights?
As parents, we take ALL responsibility for that child until that child has reached the age of personal responsibility. If that child never reaches that age, then you, as the parent, must own that responsibility. That is part of living in the world in which we live. Things don’t go as planned. Hurdles, mountains, and deserts are to be crossed. When these challenges come our way, we don’t look to the nearest scapegoat in order to make ourselves feel better or skirt our responsibility. No, we do the right thing. We love our kids and raise them to be all they can be. We learn from them. We are changed into better people because we have allowed brokenness to be meaningful.
We want to wish everyone a Merry Christmas and a prosperous 2016!
Our family loves this season of family, friends, and good food. We love the dark, cold night of new beginnings when a baby was born in a Bethlehem. Jesus, the light of the world, was born of a virgin. He came to save us, and he completely accomplished that goal with this life, death, burial and resurrection.
We like to decorate the tree, gather with friends, sing carols, read the scriptures, worship with other believers at church, and give gifts! There is nothing like it.
Then, we rest from work and anything productive from December 26-January 1st. We reserve that time to recharge and rest. We all need strong Sabbaticals from the daily grind. Many of our friends and church members suffered greatly in 2015. Family drama, two massive floods, the passing of loved ones. We stuck together through it all and look forward to a fresh start in 2016.
In late November we were blessed to get our family pics taken by Shannon Lafayette Photography. A good friend. Check her website out.
Doctors said she would probably live 6months to 2 years. It has now been 14 and she continues to defy the odds by God’s grace. She teaches daily powerful lessons of courage, determination and faith. If you haven’t read her story, click links in menu to see what God has done!
WE LOVE YOU, KENNADY.
Amazing pic by Shannon Lafeyette Photography. http://www.shannonlafayettephotography.com/
The other day, I (Robin) was sitting on the couch after a long day in the office. I was so tired. Oddly enough, most of the family was sitting together in the living room downstairs. Avery, our 9yr old son, said, “Dad, look at me. I am going to do 20 somersaults on the floor.” Honestly, I thought, “Why in the world are you going to do 20 rolls on the floor? I don’t think I have the energy or focus to watch you do something so boring. Can’t you do something else?”
Without being able to contest or put him off, he jumped into the air and started rolling across the floor. He rolled and rolled and rolled some more. He linked as many rolls together as he could. Then, he would run into a couch, turn and continue rolling. With each roll, I melted a little. My brain began to focus and my heart began to melt. I began to cheer for him and count loudly for each roll. He went from 20 rolls to 30 to 40 and finally collapsed after 50 consecutive rolls. I was yelling for him to keep going. He laid on his back, arms stretched wide, looking at the ceiling, and breathing heavily. He said, “I’m done.”
As soon as he finished, I realized that I was so thankful for him. I was so thankful that he was alive and could roll on the floor. I was thankful he could call my name. I was thankful that he was interested in impressing me with the seemingly meaningless skill of consecutive somersaults. God has a way of using things like somersaults as an alarm clock, waking us from our deep slumber.
Our blistering pace of life seems to put to rest our thankgiving. I think there is a feeling of gratitude way below the surface. We all understand that we don’t deserve the blessings, the people, the life we live. However, we rarely slow down long enough to actually allow those “thoughts of thanks” to bubble up to the surface and make themselves known.
Enter Thanksgiving (you know, the 4th Thursday of November). It’s a good thing. If not, we would probably go years before some issue of life hit us up across the head and finally woke us up.
Why are you thankful this year? A better question may be: What are you thankful for today? Does it take a while to dig something up? We are conditioned to think we need more…that what we have could always be improved or increased. That type of thinking naturally washes away a thankful, content heart. Maintaining a thankful heart in the midst of struggle or hard work is near impossible.
My thoughts on how to change that: Start a Daily Thankful Habit
We all have some good, daily habits. You know, little ones that make a big difference. We tell our kids we love them. We hug our spouse. We pray for our food. What if we added a little thankful habit? Maybe we need a Thankful App on our phone or a notification on our tablet. Take 5 min and slow down. Meditate on it. Write it down. Post it. Journal it. Tell someone. Tell God.
You need a plan.
Plan what you will do. Plan what you will do for the 5min. Will you simply meditate on it? What will stimulate the thoughts? What will you do with the thoughts (write them, talk to others, post them)?
Plan when you will do it. Plan how you will remember to do it. Find some other pattern or habit that is secure and attach this habit to it. OR attach the habit to a certain thought you have each day. You need a trigger to activate the habit. If you don’t connect a new habit to a trigger, you will not remember to do it. Plan a way to remember it for the first 2 months. Some say it takes 21 days to establish a habit. Maybe I am slow, but I have learned it takes me 2 or 3 months.
Plan who will be involved. Plan who can help you generate this thankful lifestyle. Who in your life could continue this conversation of gratitude (probably someone who you are already thankful for)? Maybe you simply find someone new each week to share your thoughts with.
Warning: using social media as a venue for expressing gratitude is dangerous. I am all for honoring others publicly, however using social media can quickly reverse the conversation and make it about your fulfillment instead of expressing gratitude with integrity. I have often posted something on Facebook and find myself going back to see who all liked it and commented on it. My thoughts are sometimes tainted with disappointment if that particular post didn’t get as much traction as I wanted. Maybe none of you are like that. In that case, disregard my warning and keep posting. 🙂
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
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.
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?
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.
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.
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.
We arrived at the hospital at 6:30am this morning and everything was going well. The doctors and nurses have been so friendly. She went back for surgery around 8am. Erica and I started napping in the waiting room when we got an unexpected buzz from our pager.
We went back to a consult room and both the anesthesiologist and the orthopedic surgeon came into the room. This was odd because they were both supposed to be in the OR. They told us that Kennady was ok, but there were going to have to postpone the surgery. During anthethsia, they went into her artery instead of her vein while placing a central line in her neck. This may cause a stroke if they continue. Therefore, they are calling off surgery, will let it heal, and will have to reschedule. The surgeon is booked all summer so most likely we will have surgery in early fall. So strange, but we trust it is best decision by them to postpone. It takes a lot of planning, energy, and faith to gear up for these things. Plus, all of you get geared up too. We are so thankful to each of you for your prayer, posts, shares, food, gift cards, and everything else.
We love you all and will keep you posted.
Here is what Robin was doing while waiting….zzzzzzz
Thursday, we went to a pre-op visit for Kennady. It is usually pretty routine.
You register, get blood work done, get the run down of all the really bad stuff, and head home.
This visit threw a boulder into my little calm pond. The reality of the risks.
Are we making the right decision? Are we doing what is best for her? Is this how God would have us care for her?
A nice neon sign would be great right about then.
I felt the weight, once again, of this journey. The weight of making decisions that can affect the outcome and quality of our child’s life. It’s a big thing, this making decisions on behalf of someone else.
I feel worried when they say, “maximally invasive”, and “she will likely need a blood transfusion”. Those things feel big.
It strips us of the control we think we somehow have.
It puts a glaring light on the “what if”, and makes you keenly aware of how little control you have.
Kennady had a surgery that went south, a year and a half ago. The surgery was difficult and six weeks later we had to have the mechanism removed, due to infection.
Those experiences begin to shape us, reminding us again, that you can be the 1%.
The truth that I keep having to repeat to myself, even if I don’t have it embedded in my heart, is the truth that God is still good, no matter the outcome. He has a plan for every step, and when I lay that all before him, I can trust that he is enough.
The surgery Monday is to correct her scoliosis. It is a complete spinal fusion.
We will wake up at 5 a.m. and make some coffee, get our girl ready, and head to the hospital.
The surgery is scheduled to take up to 8 hours. She will be in the hospital for a minimum of 5 days.
We would appreciate your prayers for as smooth a surgery and recovery as possible.
We will post updates here on the blog!
We love and appreciate all of you.