by robinsteele1@gmail.com | Nov 30, 2020 | Grandparents, Moms, random life
Check out our article in Christian Parenting Magazine!
Written by: Robin Steele | Published on Nov. 27, 2020
Just before my first child was born, I was driving down the road and thinking, I wonder what it would be like if my child were mentally disabled. Nah, that would never happen to me. That is like winning the “bad” lottery.
I immediately shelved that thought and said a little prayer like, “Lord, thanks that I don’t have to go through things like that.” All my life, I had seen the provision of God.
Two months later, my daughter, Kennady, was born with alobar holoprosencephaly and a prognosis of living six to twelve months.
An MRI revealed that her brain was so deformed that doctors were not sure what parts were there and what parts were missing. My wife and I were stunned.
I remember walking out into the hallway and leaning up against the wall. My head fell back; I squeezed my eyes shut. My father walked up to me and stood by my side.
After a moment, I collected my thoughts and said, “Two things really bother me. First, this is not Kennady’s fault; she had no option. She was just being herself and being born, yet this has happened to her!
“The second thing is that society will not value her as a normal person. They won’t see that her soul and spirit are just as real and as normal as theirs. Most people will not take the time to look beyond the abnormal outer shell and see the innocent girl underneath. They will see a severely deformed young girl and immediately, subconsciously devalue her. That is not fair for her.”
It only took a few days for that to start happening.
Who defines meaning?
I was visiting with Kennady by her crib in the NICU. At the foot of the bed was a clipboard of doctor notes. In the doctor’s hand, it read, “The parents understand that there is no chance of their daughter having a meaningful life.”
The bang of those words rang in my mind like a gavel strike.
Judgment passed over my daughter’s entire life with a short yet sweeping sentence. I was utterly crushed and, seconds later, angry.
I was furious.
The doctor was not trying to be cruel. However, his wording on the report vividly revealed our human condition. We judge each other’s meaning based on what we can produce or achieve.
My wife and I often wondered what our daughter would have to accomplish before the doctor would deem her “meaningful.”
- If she could walk, would she cross the threshold of meaning?
- If she were able to form words or write sentences, would she be meaningful?
- Would she have a high market value if she were able to go to college or get married?
For years, we were forced to explore where meaning comes from, who defines it, and how it is officially proclaimed.
We took her home from the hospital on January 5, 2002, with the words, “Take her home and enjoy her while you can.”
Well, we have been “enjoying” her for the last eighteen years!
Where do you find your joy?
Kennady has defeated all the doctors’ prognoses of life expectancy. However, she lives with profound special needs.
She is unable to walk or use her hands. She is nonverbal and unable to eat by mouth. She basically requires twenty-four-hour nursing care. We administer around ten to twelve medications every day. Kennady’s flexibility is getting much tighter, which makes moving, showering, and changing clothes a big challenge.
From the surface of her life, she seems quite broken.
At the same time, anyone who gets around Kennady can definitively say that she is meaningful. Deep down below the surface of her life, she is whole. That wholeness bursts forth with every smile and giggle. She lights up the room when she hears your voice (or when we turn on her favorite rap music).
Her joy does not rely on people’s approval. Kennady has never performed to earn our acceptance.
She rests in her identity.
“The way she is”
I always thought I would discover God’s power when he healed our daughter from her physical condition. It made sense that, if he healed her brain and she started acting like us, we would really see his awesome nature on display.
However, the opposite has been the case.
For years, I prayed for her to be healed. I prayed so much that I was exhausted. At one point, I clearly heard God speak to me, “I love Kennady the way she is. Regardless of what she is able to do.”
Once I heard this message, my perspective completely changed.
I realized that I had wanted her to change so much that I had not loved her for who she was. The truth was contagious.
If God loved her before she did anything, then he loved me before I did anything.
Her meaning in life was not predicated on her ability to perform. Instead, her meaning solely rested in what God said about her.
How to raise children with meaningful lives
We now have two more kids. They are normal teenage boys with no significant disabilities. The biggest risk we have is that they will start relying on their own abilities and listening to the world’s message. If so, they will drift from the Father’s clear and distinct words of meaning and value. They could become addicted to their own ways of acceptance and approval.
Our main role as parents is to keep… See the rest by clicking here!
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by robinsteele1@gmail.com | Sep 18, 2018 | Choices, Moms
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!
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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.
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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
- Never call Names
- Never Yell
- Never get historical (once you deal with things in the past, leave them there)
- Never say “never” or “always”
- Never threaten divorce (low blow)
- Never quote your pastor 🙂
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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!
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by robinsteele1@gmail.com | Sep 10, 2018 | Children, Moms
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
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by robinsteele1@gmail.com | Jun 2, 2014 | Moms
Barbara Steele reading the Bible
One of mom’s greatest roles is to comfort in the middle of pain. Kids are constantly scared of the dark… especially thunderstorms. Robin’s dad, Rob Steele, is an incredible writer. The other day he posted this amazing story of his mom calming the storm.
Mama and the Monster!
Something was intruding on my dream; there were distant rumbles of thunder coming from an approaching storm, but that was not it. This was more of a high-pitched scritch, scitch, scriiiiitch that repeated itself every few minutes. My heart started pounding, and I knew it was happening again. SOMETHING was in the room. I could hear it shuffling over by Randy’s bed. There it came again, that scratching squeak like somebody dragging their nails over a chalkboard. I lay there frozen in fear of the unknown THING that was creeping up on my bed ever so slowly. Just then the lightning cracked, and I saw very clearly outlined, a weird shadow of the beast that had come to get me.
This wasn’t the first time that this had happened. Usually if I called for Mama, she came and made all the bad stuff go away. This time my little 5-year-old mind had conjured up a monster that was so evil and big I knew there was only a few seconds left before it got me. I sucked in a lungful of air and gave out a piercing shriek for Mama that let everybody in the family know about the monster. Daddy even knew about it and came flying into the room ready for combat. Mama was right behind him, and when she saw I was not being dismembered or being dragged out the window by the thing, she told Daddy to go back to bed.
(more…)
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by robinsteele1@gmail.com | May 19, 2014 | Children, Moms
The Bollingers! (a while back)
Jason and Holly Bollinger are amazing parents and pastors. For the last several years Erica and I have grown very close to them as we have pastored side-by-side in San Marcos, TX. We are a bit sad because they will be moving and we won’t see them as much. We asked them to send us a post for our blog. Here are Holly’s thoughts:
THE FAITH OF A TWEEN-AGER!
Every once in a while in parenting, you are caught off guard by your kid doing something that seems to fill your soul. I know some people really enjoy the baby years with their kids, but I find my kids to surprise me more and more with the soul-filling as they get older.
We have three tween-agers. Our house is rich with drama, puberty, volume, and opinions. Our house is also rich with three kids of ministers trying to find their way into their own faith. We try to protect our kids from feeling like Pastor’s kids, but we do our best to equip and encourage them into a faith journey of their own. Some of the greatest joys come from watching them work this out. More and more one of them will pray a prayer that brings tears to our eyes. More and more they’re seeing ways to love others well. It’s refreshing to watch them grow…not because they were forced or assigned, but because they want to.
As tween-agers, Sundays can be challenging. Some days they relate more to the younger kids and play with them, and some days that act more like teenagers and have an actual interest in what’s going on. We try to give them room to play while trying to lead them to a greater appreciation of what’s happening around them. All of our kids really love music, but at a party after church a while back one of them pulled me aside. “Daddy, when you and Mommy were singing that song, I felt tears come to my eyes and I felt something inside of me. I felt the Spirit coming over me.”
(more…)
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by robinsteele1@gmail.com | May 10, 2014 | Moms
Erica, her Mom, and brother
Our culture is missing honor. We are so preoccupied with our own progress and contentment, we often forget respect and honor. Although honor is missing in our culture, it is a fundamental part of the Bible. The biggest text on honoring Mom is:
“Exodus 20:12 Honor thy father and thy mother: that thy days may be long upon the land which the Lord thy God giveth thee.”
If your mother is still alive, regardless of your and her ages, you can HONOR her in these 4 ways. If your mom is no longer living, then pass the love on to another one! Feel free to borrow our moms.
1. HONOR HER WITH YOUR WORDS
Men have the philosophy—“I don’t have to say ‘I love you’, you already know it. I have told you before, if I change my mind I’ll let you know!” Or, “I SHOW love, not just say it”
That may be true, but moms need to hear the words, “I Love You!” Children need to hear it. Saying it makes you more of a man, not less!
We have been intentional with making verbal affirmation statements a part of our family culture.
(more…)
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