We are constantly wanting to change specific things about our life. Our hair, our weight, our finances, our job situation or our disability. The list can go on and on. We are thinking that if this one thing changes, then we will be set. We think that we will not have to worry about other things because this change will in essence “fix us”. We think, “If this changes, then everything will be alright.”
After our daughter was born with a severe disability, we were faced with the impossible task of changing or fixing her. We simply could not take away her disability. Don’t get me wrong. We researched, planned, went to the best doctors, and…… we prayed for months…years. It became clear after a while that she was not going to change from this disability. So, now what? How do you live with something that is not changing? We then begin to explore the idea: Does it really need to change in order to be ok? Does she need to change in order to a good or valid person? Does she need to be healed so that she can have a good life or that she can be a meaningful and whole person?
I believe that God says no. No, your life does not need that one thing to change in order for your life to be whole or meaningful. Watch this video on our conclusions:
In no way are we saying that God does not heal and change things in our lives. In fact, our family still prays for God to perform miraculous acts in our life. We believe that he is able and that in many cases he does. However, the bigger picture is that we do NOT have to wait on these miracles in order for us to live in peace. We do NOT have to rely on these changes in order to feel good about ourselves or distrust God in the difficulty.
God offers peace that transcends our surroundings and what we can figure our with our minds.
And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7
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.
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.
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.
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.
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.
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.
On Mother’s Day, I (Erica) woke up with a heavy heart. Honestly, I have had a heavy heart for the last three days.
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.
Here is an actual pic of Kennady’s spine. It is on a 74 degree angle.
What is she talking about? A lot has gone on in the last 8 days. I will give you some bullet points. 🙂
What People are Saying