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After the USA Today Article

by | Jun 29, 2019 |

Wow! It has been a busy few days. On Friday, USA Today released an article about our family and we have been overwhelmed by the support. Of course we were surprised and honored that Sonja Haller reached out to us and wanted to write a piece on our daughter’s life. She did an incredible job covering so many years of ups and downs. We had over 12,000 hits on our blog that day!

As a result, we have been connected to so many new “friends”. Thanks to everyone who signed up for our blog updates! It has been so encouraging to read your emails about your own journey/kids/special needs/faith. Please keep in touch. If you haven’t connected directly, we would love to hear from you! Send us a email and tell us about your family!

We wanted you to see an update pic of our family. If you did the math and looked at the pics in the article, you probably realized that our kids are way too young in those pics. 🙂 Check out this pic from Thursday night! Dore Pope Photography just captured this one (and we love it).

If you haven’t followed us on social media, then we would love to connect with you there. That is probably the best way to keep track of our family. We post quite a bit on Instagram and Facebook.

Check out Erica’s Midwifery practice and Robin’s pastoring practice. Ha!

You matter because… you are…you are God’s kid! He accepts you! He is in total control!

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Robin, Erica, Kennady, Jude and Avery

Getting your big “ask” out of the way

by | Apr 1, 2019 | ,

Today marks 15 days that we have been here in the hospital.  I (Erica) honestly could not have imagined that we would be here this long.  I have also realized that it is rare that you have any idea how long an unexpected trip to the hospital will last.  There is still no clear escape plan, but I am preparing my Jedi mind tricks to use on the doctors.  Be looking for a post about going home soon, poop or no poop!

It seems like the longer we are here, the more I find myself riding the emotional rollercoaster of feeling encouraged, then plummeting to discouragement.  

I have had so many thoughts, but not put a single one down on paper.  

The fresh winds of hope have come over the past couple of weeks, followed by thick waves of discouragement.  

This past Wednesday I had come home after being relieved by my precious mother-in-law.  I had been up at the hospital for two days and was exhausted.  When I got home we had to deal with some other family issues, which was honestly the last thing we needed.  I had a meltdown and was just feeling like it was all too much.  Robin and I dropped the boys off at youth that evening and went to dinner, then Robin left to go up to the hospital.  He traded out with his mom and stayed the night.

As I was getting ready for bed, I just wanted to lay down and sleep, I was exhausted and the tears were overflowing.  

On this journey it is hard to let go and let others in.  Not because people haven’t offered, but because as mama and poppa, we want to know what’s going on with our girl and make sure that we keep her on the fastest track to breaking free of the hospital.

In my moment of tears and overwhelm, I felt God speak to my heart and say “you need to let people help you.  Especially ones that you love and trust”.  

I slept well that night, and woke up feeling less overwhelmed and ready to reach out for help.  

I texted Robin’s cousin Krystal, who had offered the week before to come and stay for an evening or overnight, if we would allow her to.  

Honestly, in that moment she offered, I genuinely appreciated it, but knew that it would be hard for me to let go and allow someone in to help. The ask is always so big.

I texted her Thursday morning and asked if she would be available to stay with Kennady that evening, or overnight.  She replied “Absolutely!  Is it overnight?  Or just the evening?”  

(Note here::  This is an amazing reply!  It is what everyone wants when they are asking for help.

Robin stayed until Krystal arrived that evening (when she brought a whole house full of barbecue from Holy Smokes for us – D-lish).  

Robin called to say that he had given her the rundown and was headed home.  

I had been doing a few things with the boys and finally sat down at our kitchen table to look at social media.

I could not have been prepared for the picture I saw when I opened IG. 
The relief, the heartache that was buried deep, the gratefulness, the joy, the peace, it all came flooding in.  I literally started sobbing and laid my phone down.  

The gratefulness that I could rest.  The absolute joy that my girl was with someone that wasn’t afraid of her differences, but loved her and celebrated her.  My heart felt like it would burst.  

It also spoke to a deep grief that I had worked through years ago.  The grief that my daughter was not able to participate in sleepovers or family cousin events.  When I saw the words “she and I are both pretty excited to announce our first “Kennady sleepover”.  Sheesh.

My girl, bing included and loved!!   It still brings tears to my eyes.  

What an unexpected gift in such a big way.  My heart was so filled.  I am so thankful God so gently spoke to my heart. I am thankful I got my ask out of the way. I am thankful for the wonderful gift of support and love our family has given us.

The Mess and The Miracle

by | Mar 21, 2019 |

Trying to diagnose Kennady’s sicknesses is so hard because she can’t actually tell us what is going on.  Over the years, we have learned a lot from her non-verbal communication: facial expressions, emotions, body language, etc.  She communicates so much through laughing, crying and her eyes.  You can look into her eyes and get a pretty good picture of what is going on inside. A couple of weeks ago, she started having coughing spells that would become intense.  They would come and go and often be accompanied with throwing up.  Honestly, we have become used to a lot of episodes like this so it is tough to know when it is a sign of something more significant.  They just kept coming and escalating.  One of our nurses pushed us to go ahead and take her into the doctor and that turned out to be a really good decision.

I (Robin) had taken a few days off and gone on a mini-sabbatical out to Big Bend National Park in west Texas (7.5 hours away).  I was really excited about getting away from civilization and cell phone coverage.  I took my kayak and mountain bike and was ready to really relax and explore (at the same time).  I arrived Friday night, had a bite to eat, set up a tent, and took in an incredible west Texas desert sunset.  The next day I took my kayak to the Santa Elena Canyon on the Rio Grande for kayaking and fishing.  What an incredible view.  I paddled way up stream away from people and enjoyed the tranquility of babbling water and warm sunshine.

  • Big Bend
  • kayak rio grande

I actually got out of the boat on the Mexican side (don’t tell anyone) for some international travel.  I was there for like 5 minutes and then got back in the boat for a nice float back to the truck.  I slowly made my way back to camp through the gorgeous Chisos Mountains, ate a nice dinner with some PromiseLand folks that now live out there, and then took in another sunset.  Just before bed, I got a call from Erica.  She had taken Kennady to the ER.

Erica and I talked through the whole situation.  We had no idea what was going on. The doctors were going to do some tests and scans and try to diagnose the situation.  I was troubled. What should I do? Drive back?  Erica told me to hang on and wait for the test results.   So, I went to bed.  Around 4am I woke up and checked my phone.  Erica had called a couple times and sent messages.  The phone signal in Big Bend is terrible which is one of the main reasons I wanted to go there.  In this case, it was quite frustrating. She said that the doctor determined that Kennady’s bowels were not working and there was a good chance that she would need surgery.  However, the doctor said that there was a possibility surgery wasn’t needed if the bowels would start working on their own.  Erica is so amazing. She said, “We don’t need you here right now.  Go on a mountain bike ride first thing in the morning and then come back.” So, that is what I did.

  • Big Bend Sunset
  • mountain bike trail

I got back to Austin on Sunday evening around 9:30pm and drove straight to Dell Children’s hospital.  We talked a bit and then Erica gathered her things to go home.  On long stays like this at the hospital we usually take 24 hour shifts.  Thankfully, our boys were with my parents and are actually old enough to stay on their own if we need them to. (they really enjoy being alone at the house without parents there)  We have several things that make these stays work: eat good, exercise, take a walk in the woods, sleep in, rest, repeat.  We try to get work wedged in when we can.

Once we got into a hospital room, we started the journey towards recovery. The doctors really wanted to avoid surgery because it is really invasive and could have complications. There was a chance that things could start working again if the small intestines had an ileus (where they simply ‘fall asleep’).  However, if there was an actual blockage, surgery would be required.  There was no real way of knowing so we had to simply wait it out.  By Wednesday morning, the doctors were not seeing the progress needed and decided to go forward with the surgery.  Things went quickly from there.  Within a couple of hours she was in pre-op. Doctors and nurses were coming and going. We were signing all kinds of papers.  They wheeled her back and then mom and dad waited patiently for 2 or 3 hours.  They finally called us back to talk with the surgeon.  Such a weird feeling. They take you to a little room with nothing on the walls except a small dry erase board. There are a couple of chairs.  It looks sort of like an interrogation room. They always call you back before the surgeon is done so you have to wait…again.  What will the surgeon say? What went good? What went bad?

He finally walked in and said that things went really well.  There was one significant blockage were scar tissue from a previous surgery had created a kink in her intestines.  While in there he saw that her appendix did not look healthy so we went ahead and removed it.   He also repaired a hernia.  Wow! Three surgeries for the price of one!!

Kennady was moved to the pediatric ICU to spend the first night.  She began to heal quickly and was moved the next day to a regular room.

THE MESS
There are times during these hospital stays that we get physically exhausted because of long nights with little sleep and lots of interruptions.  Some days are tough because we have to make BIG decisions.  So much emotion is expended to exist in these moments.  We spend days wondering if the treatment will work and have absolutely zero control over the outcome.  I had to cancel my trip to Big Bend.  Our daughter was cut open and had her insides worked on.  We are spending so many hours away from our family. We are spending a lot more money on food.  Things are falling through the cracks at work.  Other people in the church need help and I simply can’t get to them.

THE MIRACLE
In the midst of the difficulty, we are BLOWN away by our support system.  EVERY time that Kennady goes through one of these difficult situations it is clear that we are not alone. God shows up with a daily allotment of grace.   His grace looks like this: We have incredible grandparents. We have unbelievable church family.  Our friends never cease to amaze us.  We feel surges of strength and peace.  We have recognized that our marriage gets better. Erica and I actually have fun. We are a part of a special program with the state of Texas where Kennady’s medical expenses are 100% covered.  We meet new friends. Doctors and Nurses do an incredible job.

Thank you, Jesus.  Only you can make a miracle out of my mess.

If anyone wants to go  back to Big Bend, let me know.  I have some unfinished business out there.

Happy Birthday, Kennady!

by | Nov 24, 2018 | , ,

Today, is Kennady’s birthday! She turns seventeen years old!

What an absolute miracle.  I (robin) remember, when she was 2 days old, standing in a cold, dark room at Brackenridge Hospital listening to a brain surgeon review her MRI results.  He said, “These results are much worse than we expected. Her condition is Alobar Holoprosencephaly, and her brain was not properly formed.  Her life expectancy is 2 to 18 months.   You can have a surgery to help her pain and comfort level, or you can simply take her home and enjoy her while you have her. It will not solve her problem or prolong her life much.”  Kennady living for seventeen more years was absolutely not foreseen. We had the surgery performed (a shunt to relieve pressure), and we took her home from the hospital six weeks later.

We had the mindset that we were going to love and care for our daughter no matter what. She was our baby, and she deserved the best care, love, and attention we could give her.  Our family, friends, and church rallied around us.

Days turned into months and months into years.

The years have not been successful in removing the fear of an early death.  Instead, every time Kennady has gotten the flu or pneumonia, our minds and hearts go to one place: “is this ‘the one’? Is this when she is going to die?”  It is really exhausting to constantly be thinking…“is my daughter going to die this time?” Since it was pronounced over her that she would die in just a few months, we lived in this really weird, guarded place.  We love her dearly, but at the same time we were guarded. We knew we would not have her for long.  We never anticipated her going to school, or hitting puberty, or becoming a young lady.  There has always been this strange feeling of being ready for death.  We have lived in a perpetual state of being ready for her to die.  We are connected to dozens of other families across the country who have kids with the same diagnosis.  On a regular basis, we see Facebook updates where one of them has passed away.

Honestly, I have wrestled with this part of her life so much.  A few years back, I started realizing that she was going to live longer, and that we didn’t need to live with death as eminent as we thought.  God obviously had different plans. At the same time, I don’t have the opposite thoughts and feelings like, “Kennady is going to live a long time! I don’t ever need to think about a shorter life span!! We can go through life like normal!”  It is somewhere in the middle like, “Let’s enjoy today. I don’t know what is going to happen next week. Thank God for where we are right now…”

The more I have learned that lesson of daily gratitude mixed with the reality that life isn’t predictable, the more I have applied it to other parts of my family and life.  I really think it is a way to anchor our hope in God and not in the words of a human prognosis. Not just a doctor’s prognosis, but anyone’s.  I think we spend so much time in fear of the future that we foster emotions God doesn’t want us to experience.  At the same time, we can put all our hopes on a future that is free from pain and death, that we foster emotions that God doesn’t want us to experience when those things happen.  I wish I could say that I flawlessly approach life in the perfect rhythm, faith in God, and appreciation for today.  That is why I have you in my life, my church, my family. To walk through these discipleship moments and hopefully mature in my faith.

So.. back to today… Happy Birthday, Kennady!

How to Fight with your Spouse and Win!

by | Sep 18, 2018 | ,

We all Fight.  How can we fight with our spouse and win?

This is one of the biggest areas of trouble in families.   Fighting about the kids, fighting about money, fighting about dinner, fighting about the laundry.  We can find any topic to get fired up about!

Let’s talk about how you can fight with your spouse and win…EVERYTIME!  The term fight needs to be defined clearly.  We are not talking about physical hitting. Of course that is never acceptable for any spouse.  Fighting is when we disagree and have arguments, discussions, tiffs, whatever you want to call it.

You have probably seen Dr. John Gottman on television. He is often on talk shows.  He says he can watch a couple argue for 90 seconds and know if they are going to make it or not.  What would he say about you?

Erica and I come from completely different backgrounds.  I (Robin) was raised in a 2 parent, very traditional family.  Mom had very distinct roles.  Dad had very distinctly different roles.  Erica was raised in a single parent home with her mom and brother.  They did everything as a team and did not have particular roles. In fact, there was no model in the home of what a dad could be.  These differences made our life in marriage very complicated.  We brought in these expectations that were completely different.  Even after we discussed them early on, we have still had to live through them for almost 20 years now.  It has been a long journey with many “fights” along the way.

The bottomline is that we all are different, we are all human, we all let ourselves get in the way.  We all will disagree and sometimes it escalates into a fight.

How we fight with each other tells us a lot about who we think we are and who we think God is.  When we have the wrong impression of God and ourselves, we see ourselves as the center of the world and that it is up to us to solve, fix, or change our spouse.  This wrong point of view will drive anger in our hearts and despair for our future.  It affects our communication like nothing else.  The beginning of healthy confrontations is FAITH IN GOD: Faith that he is the creator and designer of our marriage. Faith that he is in control of our lives.  Faith that he is able to transform us into the humans he originally intended.  When we view ourselves as dependent on God and view God as being loving and capable, then our conversations with other humans will look completely different.

OK, so let’s say you have a healthy view of God and your faith in him is strong.  What happens when emotions get in the way and someone does you wrong?  How do you deal with it?  This text gives us the answer!

Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger; 20 for the anger of man does not produce the righteousness of God.  James 1:19

This text gives us 3 Rules to Fight Fair and Make sure everyone wins!

  1. Stop to Listen Carefully – Be Quick to Listen!

We are often quick to prove our point. We are wanting to get a word in edgewise.

A fool takes no pleasure in understanding, but only in expressing his opinion. Proverbs 18: 2 

 If you feel like you have to prove your point or get something across, then you are not fully trusting that God is in control. You believe that he is not capable to defend you or make the situation right. Or You believe that God is not the one who gives you strength and credibility.

Prove to your Spouse that you are Quick to Listen:

  • Repeat back to your spouse what he or she just said. It lets them know what you just heard.  It keeps it focused on the topic at hand. “I understand why you feel _____________ when I do _______”
  • Validate the fact that the feeling is there! Whether you agree with it or not. This is crucial.

When your spouse feels like they are not being heard, they will only escalate their voice and demeanor.   When we are not heard, we feel helpless and like there is no hope.  LISTEN first.

 

  1. Guard Your Words Faithfully

The wise don’t make a show of their knowledge, but fools broadcast their foolishness.  Proverbs 12:23  

Before talking in an argument, ask yourself: Should this be said ever? Should this be said NOW?   If the answer is NO then, don’t say it!  Some things need to be dealt with but not in the middle of the fight!   Fight fair about the topic at hand.  If there are different topics that need to be discussed, then don’t avoid them all together.  Instead find a better time where each of you have more emotional margin to process them.

On the other hand, if you are avoiding a topic because you know the other person will blow up, then it is definitely time to connect with a counselor and prayer partners.  There is a time to say difficult things.  We need to address them.   Let’s trust God that He will redeem the situation. No sin is too great for God to redeem and heal.  God can prove himself to you in the most difficult relationship situations.

Here are some Rules for Fighting Fair

  1. Never call Names
  2. Never Yell
  3. Never get historical (once you deal with things in the past, leave them there)
  4. Never say “never” or “always”
  5. Never threaten divorce (low blow)
  6. Never quote your pastor 🙂

 

  1. Handle our Anger Righteously

We can be slow to anger because we trust that God is in control and that he is the ultimate judge. I do not have to rush to judgement or anger because deep down below the surface of my life, I REST in the fact that God has got this! 

Be angry and do not sin; do not let the sun go down on your anger, and give no opportunity to the devil. Ephesians 4: 26-27

Anytime you go to bed with an unresolved issue, you give the devil a foothold on your marriage.  The little problem gets a little bigger.   Erica and I sometimes go to sleep with out completely resolving an issue, BUT we have an agreement to never go to bed bitter or disrespectful to the other person.  Often we say, “We have a lot to talk about on this issue. We can’t solve it tonight. However, I love you. I’m committed. I’m sorry.”

Sometimes you have work through hard things. You have to FORGIVE. You have to release some of your tension.

Praying means a great deal.  It is not as easy to fight with someone if you pray for and with them everyday.

Erica and I spoke on this message at PromiseLand. Click here to watch!

 

Five Steps to Make Your Family Stronger

by | Sep 11, 2018 |

The Bible is filled with wonderful principles and steps to make your family stronger!  Just to make it a bit more interesting and practical for everyone, our definition of Family has two versions.  BOTH important:

We all have a “LIVE WITH FAMILY” – The people we live with.  Our bio family or roommates.  We all also should have a “WORSHIP WITH FAMILY” – The people we walk in faith with. Our Church family

Here is a GREAT scripture in Hebrews relating to family:

Let us think of ways to motivate one another to acts of love and good works. Hebrews 10:24

We need to collaboratively think about.  We need to Invest in, work at, be creative with our family plan.  You should call a family meeting this week and get everyone’s input.  Kids and adults

Here are the 5 ways to move towards your best family:

  1. CHANGE FAMILY ATMOSPHERE TODAY.
    Your family atmosphere can change today!  It will take a while to break habits and culture, BUT you need to grab the idea right now that the atmosphere of the home can change now!  Let’s have a MIND SHIFT about our family life!  Our old way of thinking can say things like:  “My family is a lost cause.  My parenting skills aren’t good enough.  I’m afraid for kids’ future. My parents don’t understand me.”

    Here is where our mind needs to be. “Family is God’s creation and design. He is the designer and builder of family.”

    It was not good for man to be alone, so He created community:

    Therefore, a man shall leave his father and his mother and hold fast to his wife, and they shall become one flesh. Genesis 2:24
    Now Adam knew Eve his wife, and she conceived and bore Cain, saying, “I have gotten a man with the help of the Lord.” Genesis 4:1

    Since God is the creator and designer of your family,  He is the sole authority on the value and health of your family.   People try all sorts of ideas, strategy, philosophy on how to have a fulfilled family,  but there is really only way to move towards your best family:  Allow God to have his way.  Model your family after His plan!

    Unless the Lord builds the house, those who build it labor in vain.    Psalm 127:1

    If you are entering this month on the ropes, and feel like you are near the end of your sanity and family unity, I want to speak some GOOD NEWS! Jesus died to redeem his entire creation!

    Your marriage and family is a part of God’s KINGDOM.  God has the POWER to redeem your family and your home environment.   When it does happen, God will get all the GLORY for it!

    Instead of deciding the future of your family based on all the families around you, let’s base it on the supremacy and sovereignty of God!

    When you are thinking negative thoughts, think…My family is going to make it!… Why???  JESUS!  Even if you have strange family configurations.   Throughout the Bible are half-sisters, step brothers, remarriage.  The Bible is full of Blended, extended, and mended families that found a way to THRIVE through the power of God!

 

  1. PRAY FOR, WITH, AND OVER YOUR FAMILY.  Dad and Mom, God created you to be the leaders of the home. Part of that responsibility is to connect your home to God.   When we move into a new home, we make it a priority to connect it to Spectrum or DirecTV.   We make sure we have the best wifi for all those vitally important games and apps and movies. However, most people neglect to connect their home to the most important ‘source’ of power and information…

    PRAYER CONNECTS YOUR HOME TO HEAVEN!

    Here is a great scripture relating to family and prayer:  “Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.” James 5:16

    What a GREAT family scripture.  Apply this to whatever issue comes up in your family.  No better place to confess sin than to your spouse.  Go for it.
    Some of you are not expert/professional prayer warriors.  That’s ok. START SMALL.
    *  Pray at Bed time.
    *  Pray at Dinner time (not just for food poison)
    *  Pray when things come up.
    *  Pray for family in private.  Then tell them!

    Grow to the point where you pray out loud in front of each other.  Pray over them, lay hands on them, Pray scripture over them.  Here is a great scripture you can adapt to pray over your kids:  “Don’t let anyone think less of you because you are young. Be an example to all believers in what you say, in the way you live, in your love, your faith, and your purity.” 1 Timothy 4:12

    Have meaningful discussions with your kids and then simply invite Jesus in on them. He is listening anyway!!

    The commandments I give you today must be in your hearts. Make sure your children learn them. Talk about them when you are at home. Talk about them when you walk along the road. Speak about them when you go to bed. And speak about them when you get up.   Deuteronomy 6:6-7

 

  1. EAT MORE MEALS TOGETHER.  Eating together is healing to kids and adults.  It takes planning and energy to eat together. It takes commitment, but it pays off.   We all need to add this rule to the dinner table:  No electronics rule at the dinner table!

    Check out this research:

 

  1. COMMIT TO THE NEXT 4 SUNDAYS.   Don’t miss a Sunday in Month!  Start a new habit of gathering with your family and other believers…weekly!  Don’t let it be an accident or coincidence!
  • The Sleep Health Journal reported that adults who attend church exhibit healthier sleep outcomes than those who don’t.” For some of you that is because you sleep IN church!
  • According JAMA Psychiatry: “women who attended any religious service once a week or more were five times less likely to commit suicide.”
  • The National Health and Social Life Survey, (the most detailed analysis of sexual behavior in America) found that “Married adults who worshiped weekly were more likely to report enjoying sexual relations with their spouse. “ 

 

  1. JOIN A SMALL GROUP.  “It takes a village to raise a family.”  Who is in your village?   We all need an upline, a downline and a sideline.  You can find people like this organically and then build relationships with them on your own.  However, most people struggle with this so the church has intentionally formed groups of  people and make it extremely easy for you to connect with them!  If you are in the PromiseLand church community, click here for a list of groups you could join.

 

 

Where is the Grace to keep going?

by | Sep 10, 2018 | ,

Last night was another tough one in this 16 year journey.  Another night of lost sleep and tears.  Where was the grace to keep going?

I (Erica) feel like the words came best when talking with a friend recently.  “I have had an infant for 16 years”.  That aspect alone is what feels exhausting.  There is never a moment where we just “do life” without considering the enormous weight of Kennady’s disability.  Every trip in the car, every dinner with friends, every trip to church we are deciding if we want to try and pull it off.  Night time is when there isn’t even a “can we”, it is just “do”.  Kind of like Yoda, “there is no try, only do”.    

Last night, after I had tucked her in, set up her bipap (like a cpap) and turned it on, the wrestling began.  Trying to get the mask to fit right and not leak.  The mask that helps her to breathe and get a good nights sleep.  The mask that mocks my efforts to get it all right.

I had started the process at 10:30pm, shortly after going upstairs I looked at the monitor and saw her fighting the mask, and the mask leaking.  Dragging myself back down the stairs to reposition the mask, I thought I had it all situated, dragging back upstairs to make sure the boys were in bed.  After getting the boys tucked in, I went to my bed and once again found her mask leaking.  Back down the stairs to reposition the mask, again.  Back upstairs to try and crawl into bed, because this 40 year old body needs a good nights sleep to function without my head spinning.  Shortly after dozing off, quickly approaching 11:30, through the monitor I can hear the mask leaking again.  The frustration is overwhelming.  I just want to sleep.  I go back downstairs to work on the mask.  Kennady is settling into a good sleep, but the mask isn’t staying where it needs to in order to work.  I adjust it, and wait.  Maybe this is the one that did the trick…  Headed back to bed.  11:45, mask leaking.  I go back downstairs to adjust the mask, or possibly burn it…

I reposition her, reposition the mask, and it leaks some.  I finally bent over on the side of her bed, putting my head in my hands and cried.  I was so frustrated.  I just wanted to sleep.  I just want to not worry about her safety as she sleeps. 

Standing there, head in my hands softly crying, I heard the shuffle of feet and the gentle hand on my shoulder.  “What’s wrong, momma?”  I quickly walked with him out of the room so that we don’t wake her up.  “Nothing is wrong with her, I just want to sleep”.  He just hugged me and told me he loved me.  That’s it.  No trying to fix something that he knows he can’t fix.  Just being there for me. 

I wonder how these moments will shape my kids.  What do they see when we are weak?  What will they remember when they are grown?    Do they realize that God is working through them to actually be a part of His solution?  In this literal dark hour, God used one of my kids to bring me light.  He delivered an allotment of God’s grace that was just enough for today.

Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:8-10

How To Be Made Whole

by | Jan 17, 2018 | , ,

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

What has Robin been doing the last 40 days?

by | Aug 16, 2017 | ,

Tuesday, I walked back into my office after taking 40 days off.

That is a long time!

It was an incredible time of rest, travel, family, fun, recreation, eating, sleeping, and everything else besides work or going to my church.  I changed my phone number and gave it out to no one except my family and Will Krauss.  I shut down my Facebook account and logged off of Instagram and Twitter.  It was incredible to not get one text, phone call, or notification.  There was a lot of of quiet time.  I actually got bored a few times.  Heck, one day, I binge-watched The Beverly Hillbillies.

Someone told me, “It must be nice to be able to take off 40 days.”  They were not being overly rude, but there was a sort of attitude about it.  What they do not realize is that for the last 14 years I have been building a team or family that is more than qualified to continue the work here without me.  So, yes, it is quite nice to take a sabbatical.  The team did a fantastic job without me.  Several Sundays they had to add chairs because the size of the congregation.  They baptized 81 people on one Sunday.  One man was healed of stage 4 cancer.  I’m pretty sure that was all God.  I heard that only 2 people quit the church. Ha!

My family and I took an amazing 16 day RV road trip.  Kennady hung out with my parents here in Texas while Erica, the boys, and I drove through the southwest. We traveled through the Davis Mountains of Texas, Tombstone, Arizona, The Grand Canyon, Zion National Park and Arches National Park in Utah, Purgatory Colorado, and Taos, New Mexico.  It was 16 days of amazing landscapes and quality family time.  I selected some pics here to give you a little taste of the glory.

Hanging with Kristin Ragsdale and Trina Lowe!

 

In week four, I cruised over to West Monroe, LA to visit some pastor friends of mine.  Christ Church WM was hosting a summer revival and my dear friends John Ragsdale and Jeff Hennigan were a couple of the speakers.  It was awesome to hang with them and their wives. Plus, I spent time with Pastor Tom and Trina Lowe, Dr. Phil Brassfield, Matt Brock, and many other friends.  This was the first time I had been in a worship service in a loooong time. Everything was so fresh and meaningful.

 

Crushin’ it with Bart and Noah.

The final week, I went for one last trip to Angel Fire, New Mexico with my Uncle Bart and cousin Noah. We went extreme downhill mountain biking. WOW! It was awesome!  I rented a downhill bike and full body armor. We rode the chairlift up the mountain and then cruised down the slopes on banked turns and tabletop jumps.  I felt like I was 10 years old again! So fun.  Yes, I had a small injury, but no hospital visits.

All in all, the 40 days were deeply spiritual even though I was completely out of my normal groove.  I had to force myself to not think strategically or even brainstorm.  This was really difficult for me. I am so driven to constantly dream, plan, scheme, etc.  I desperately wanted to go back to church on Sunday a few times.  However, the space that I created was the perfect spot for refreshing. It was a place of clarity.  God brought a Hebrews chapter 4 type rest into my spirit that was desperately needed.  (If you don’t know what I’m talking about, go look it up).  As a result, I have a completely new perspective of my life and the church.  I am hearing from God.  I am ready for the next chapter.  To the church folks, who missed me…I missed most of you too. HA!  Ready to see you Sunday and do what I do.

Oh yeah, I also grew a beard.

 

Here are some more scenic pics I took from the journey.

Retarded is Not a Bad Word.

by | Jun 20, 2016 | ,

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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