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 | Jun 5, 2020 | Grandparents, How to deal with pain
“Well, she didn’t really ‘graduate’,” he replied with a smirk.
That was the phrase that brought our graduation celebration to an abrupt halt. Literally, brought us to tears and anger. It came from a close family member while telling him about Kennady’s latest miracle of going through 15 years of the public school system. Life is hard enough without words (from family members) making it harder. Yes, we know that she didn’t get a 4.0. Yes, we know that she didn’t get first chair in the band. She actually failed at accomplishing many of the goals we set in all of those ARD meetings. What does all of that mean?
The main issue with these words is that they tie directly back to the words of the doctor a few days after Kennady was born. The doctor’s words were, “their daughter will not have a meaningful life.” This recent proclamation was, “she didn’t really graduate.” What this really says is, “Her finishing school doesn’t really matter.” or “She didn’t really do anything.” DUH! Do we really need to hear that? As parents, we are actually experts on every detail of Kennady’s life. We know exactly what she does or does not do.
I’m sure that everyone reading this blog will jump to our defense and say that these statements are harsh. We love that you will support us in this moment. We do benefit from your affirmation.
But… let’s stop for a second and look deeper below the surface…
The doctor should not have used those words right after birth. This family member should not have used these words last week. However, both are a symbol of how humans view what matters. These words show something that we all wrestle with internally. How will I matter? How can my life mean something? What do I actually have to do to have other people say that I matter? The answer: It depends on who you ask. The answer is subject to who is answering… who is saying the words.
Who is saying the words? Whose words mean the most?
It is really tough when the words come so fast and so often from people we are supposed to trust (doctors) and respect (family). Yet, we still have a choice. When people’s words anger, sadden, or confuse us, we have to choose if we will receive and believe them. We are faced with the brutal process of fighting through the emotion and finding the truth. Are the words true? Sometimes tough words are true and we must accept them.
However, we often accept lies. We hear them, believe them, and live our life based on them. The only way to pierce that darkness is with a sword. There is a sword available that is super sharp, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires. Nothing in all creation is hidden from God. Everything is naked and exposed before his eyes, and he is the one to whom we are accountable. The sword is THE Word. (Hebrews 4:11-12 NLT)
The only way to combat ugly words is with THE Word. The Bible says that “the Word” has existed from the very beginning, nothing was created except through him. The Word gives LIFE and LIGHT to everything and everyone. The Word brings light in the darkness and the darkness can never extinguish it. (John 1:1-5 NLT)
The Word that the Bible talks about includes the words of the actual Bible, but The Word is more than that. The Word is Jesus. Reading and meditating on the words of the Bible introduces us to the author. The Word is eternal and absolute. We can stand on this firm foundation. We hide under him. We can weather the storm with him. If things in this life are troubling and seemingly impossible, his Word will be the final word.
Who do you know that needs The Word today? Not a word that will judge or condemn, but a word that will bring light and life. Let’s pray for them. Let’s listen to them. Let’s hold them.
Let’s BE THE Word that they need to hear. Let our words heal.
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by robinsteele1@gmail.com | Jun 30, 2014 | Book, Choices, Grandparents
When people think of your family, what images or emotions come to mind? What is your family identity? We are passing down attributes, habits, culture, and characteristics to the next generation. What are you passing down? If you haven’t considered it, then NOW is the time. Being “liked” is not the ultimate winning scenario. It is possible that you will not be liked by some when you live out the characteristics and moral values that are Biblical. (I just used that title to get your attention. So far so good. 🙂 I’m not sure if people like my family, but I love it!
WAKE UP CALL: Just because your family goes to church doesn’t mean that you are passing down Biblical values.
Another WAKE UP CALL: Your best intentions don’t work Biblical values into your posterity.
Your kids are only accepting and growing into the values that you live out before them. We must be intentional about living the life.
I wrote a mini-book to help people work through these issues. It is 4 short chapters with questions that guide a discussion with the rest of your family. You can get it free by signing up for our newsletter.
Our Steele family has a strong heritage of hard workers and deep faith in Jesus. We are determined to have this culture passed down to each subsequent generation. Each of our families are intentional about creating a home culture that cultivates each person’s individuality while at the same time staying anchored to eternal, Biblical truths.
- Salvation – Jesus saves us and we want to participate in others finding Him.
- Forgiveness – We have been forgiven and willingly forgive everyone else.
- Love – We want to live out love in our neighborhood. We want to participate in the resolution.
- Integrity – If we said it, we meant it. We will follow up on it.
- Hard-Working – If you don’t work, you don’t eat.
One thing that we do each summer is host a summer camp for all the kids in our family that are 6-12 years of age. The moms, dads, aunts, uncles, and grandparents all chip in and help lead the kids. There is a whole lot of fun. The strong prayer culture created by our grandmother is passed down. Most of all, we live together for a week and share ourselves with each other. Wow! We host it at our family’s ranch in the Texas Hill Country. A very rough, yet beautiful ranch with cows, creeks, and a lot of critters.
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For more pics, you can follow the Instagram hashtag: #steelefamilycamp14
Would you like to plan something like this Family Camp? We can help you plan it! email us: hey@mademeaningful.com
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by pastorrobin | May 29, 2012 | Children, Grandparents, hospital, How to deal with pain
It has been one week since Kennady went into the hospital and today she goes back to school! She was admitted into Dell Children’s hospital because of severe vomiting. The source of the nausea was low sodium levels. It took eliminating all food and drink to get her levels correct again. It was a drastic step. The doctors telling you that your child can not eat or drink anything for the next 36 hours is intense. Erica actually asked them, “Would you treat a normal child like this.” The answer was yes.
It only took a few more hours and she was doing better. We were sent home on Friday night.
During that time, life goes on. Our other two boys are doing their 6yr and 8yr old thing. I have to pastor a church. Erica balances life, school, mothering, being a wife. The rest of the world doesn’t stop. It takes the GRACE of GOD to maneuver through. We decide several things:
1. We need help. When people ask what they can do, we have learned to tell them. It is so difficult. Our natural response is to say “Thank you” and then not use their help. However, we have learned that people are blessed when they help and we need the help. It is a double blessing. Every time we go through a challenge at this level, we have a huge outpouring of prayers and people calling to support. We had people buying breakfast, visiting, helping with our kids, and more. Here is a clip that “Grana” took when she went to field day with Jude.
2. We need to connect. Before the storm comes we need to connect with people. We make the conscious decision and effort to connect to a local church body. I don’t know what we would do without our church family.
3. We need to focus on the need. We need to be there for our daughter. God has put us in her life to raise her, provide, and protect. We need to research the conditions. We need to TAKE INITIATIVE with the doctors and nurses.
4. We need to keep moving. We must have balance and continue to walk through the rest of our life with as much normalcy as possible. One day, I took the boys to my parents house and we worked on a new playhouse. Or should I say play mansion??
All of the movement is a dance with life. We take a step and then life takes a step. We move and then conditions change. The only way we are able to smoothly move is through the Grace of God. His power enables us. He has endued us with the ability to move through challenges and valleys.
Thank you, Jesus.
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by pastorrobin | Feb 29, 2012 | Grandparents
Written by Rob Steele (Kennady’s “Granddad”)
At this point in my spiritual journey, Kennady is probably the most meaningful person in my life. For ten years I have prayed that God would miracuously transform her into the normal human functionality. I made deals with Him, finally hitting on one that I thought would be just right and that He would surely honor. I said “God, Let her have the choice to love you like everyone else has, it’s her birthright as a human.” Of course, somewhere down in my mind I knew that if she could do that she would have all the other abilities inherant with that level of thought.
Then one day while praying for her, God spoke to my spirit and said, “I have given Kennady to those who love her as an example of what you are to become. Instead of asking me to drag her down into the fallen state of mankind, seek instead to become like her. She is perfected in me.”
Kennady is now my beacon of light, an impossible hope in my human state who beckons me on to attain that which we were created for, not becoming one with humanity but becoming one with our creator.
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