by robinsteele1@gmail.com | Jan 20, 2021 | Choices, How to deal with pain
We were asked to write an article for “One Extraordinary Marriage” and their March issue of The Position Post. Their ministry is incredible and broaches a topic that many in Christianity shy away from. Go check them out. They asked us to write on how couples can thrive in the midst of troubling situations (like special needs kids). Here you go!
The idea of marriage seems impossible. Two humans living together, sharing all the good and bad, helping each other, liking each other…until they die…WOW! How in the world is that possible? Now, throw in a child that is unable to care for themselves and requires 24 hour attention…for the rest of her life. This is how my wife and I started the early years of our marriage 22 years ago. Our daughter, Kennady, was diagnosed with Alobar Holoprosencephaly which meant that her brain was severely misshapen, and the prognosis was devastating. She would be unable to walk, talk, use her arms or hands, and there was no cure. We got this message from the brain surgeon in a small, dark room next to the neonatal intensive care unit. As we left the room, the darkness followed us. How would we make it?
As we launch into 2021, I’m happy to say that our marriage is stronger than ever. Our daughter is now 19 and we have two sons, now 16 and 14 years old. Over the years, four simple things have built our relationship in the midst of such challenge.
- Trust God – 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 one 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 When things are not going the way you want them to, trust that God is still in charge of building your house.
- Make a Stand – When we first started connecting with special needs families, it was depressing! Not because of the kids’ situations, but because the parents were in such a funk. In the first few months of our daughter’s life, we made a statement that has guided us through every season: “We are not going to let Kennady’s condition define her or our family.” We had seen many special needs families stuck at home. They were either afraid to go out or just too tired. We decided that we would: go to church, out to eat, send Kennady to school, and go on vacations. This decision forced us to continually look to God… to lean on his understanding and ways.
- Invest in Others – When my wife gave birth, there were 50 people sitting in the hospital waiting room. From that moment until this day, we have been surrounded by people willing and ready to help us. They were not all family. They were not there because we were famous or because we were the pastor (we weren’t pastoring a church then). They were all there, and have stayed there, because of years of investing in each other. This takes intentionality and hard work. It also means having the courage and taking a risk to ask for help. This means sacrificing for others. There is no way we could have raised our family on our own.
- Take Time to Get Away – I saved this for last, because it absolutely won’t work without the other three happening first. Couples must take time for themselves to rest and recharge. We asked people to watch our kids while we went on a weekly date night. We spent months saving money and lining up help to watch our daughter so that we could take a vacation by ourselves or with our two sons. We trusted that God would take care of our family when we were gone.
When our kids have special needs, that does not assign our marriages to eternal darkness or death. In fact, we have seen the opposite. In the areas where we have lost control, God shines the brightest.
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by robinsteele1@gmail.com | Dec 11, 2020 | Uncategorized
The majority of Americans were either so mad or so afraid during the early stages of COVID19 that their time at home was spent… worrying. We stewed and grumbled. We complained about the government. Many of us (church leaders) were concerned that our church finances would be ruined and that no one would come back from the forced break. Now, as many churches are reopening, we are finding out that… people are coming back and the church finances are going to be alright. The people that are dealing with illness or setbacks are seeing that God is in the midst of that as well. We are going to be ok. We are going to make it.
I believe that many people will look back at their time during the COVID19 quarantine and say something like, “If I had known that things would turn out well, I would have enjoyed my time stuck at home.” In essence, many Americans have had weeks of free time that we haven’t seen since our childhood. However, the time at home didn’t feel like a vacation. Instead, it felt like a prison. So many of us were unable to enjoy the time at home because our minds were trapped in the suspense of the unknown.
How do we drift so far from the assurance of God’s provision? Why do we spend so much of our emotional energy struggling? It is bizarre that we can have so much knowledge of God in our head and yet, our heart feels something different. Seriously, most of our minds are filled with facts about God. Theoretically, we should not feel this way. There seems to be a disconnect.
In my household, we have one of the most vulnerable people around. My daughter is severely mentally and physically disabled. In the womb, her brain did not form correctly, and as a result, the doctors gave her just months to live. They predicted that she would die from the flu or pneumonia within a year. For the first 5 or 6 years, we entered into flu season thinking, “Is this the year.” She has defied the odds and lived for 18 years. However, her life is extremely different from you and me. She is unable to use any of her limbs, she can’t speak, she can’t eat by mouth, and she requires 24 hour assistance.
We lived in that cloud of unknown for so long. It was exhausting. Constantly trying to move forward in life without know what that might look like was draining. These scenarios were not only challenging to suffer through from a practical standpoint, but a continual barrage over the years reinforced a loud message that we were not going to make it. They figuratively said things to us like, “You have no future. You cannot sustain this. You will run out of money. No one understands you. No one has the capacity to be your friend. You need to give up.”
As the world goes through 2020, negative messages bombard us. If we listen to them unprepared, we will be swept away on a journey far from home. We will travel from wholeness to a land of bitter, angry, lost, loneliness, and incompleteness. Most people live in this spot separated from the truth of God. As a result, we try to find our way back to peace in any way possible. Humans spend billions of dollars to get our minds off the mess. We try anything we can to distract ourselves, change our surroundings, or buy our way out of it. In 2020, alcoholism, drug use, suicides have all sky-rocketed.
The only thing that genuinely led Erica and I back home was hearing our Father’s voice. I love what Augustine of Hippo said, “The Holy Scriptures are our letters from home.” The voice of our Father speaks truth amidst the chorus of confusing voices. In my darkest hours, the only thing that has assured my peace has been the truth of God’s voice. Hearing His voice and finding ways to center our lifestyle around it preserves the state of our hearts and minds.
When Jesus walked through desert times (literally a desert). He was tempted by the devil to believe that he was not whole. The only thing that Jesus used to combat the voice of the devil was the voice of his Father! Jesus said something amazing about pursing voices of the earth versus the words of his Father: “People do not live by bread alone, but by every word that comes from the mouth of God” (Matthew 4:4 NLT). Basically, Jesus was saying, “Don’t rely on what people say around you. Don’t even rely on what this world can provide for you (even if you like the taste). Instead, your heavenly Father’s words are continuing to come towards you. Live off of those.”
This is a beautiful way to live. Jesus was anchored in peace because he chose to listen to the truth from his heavenly Father instead of the words and facts shouting at him. You could make a case that Jesus knew the words of God because he was God himself. However, when Jesus addresses the devil, he uses the words of the Hebrew Bible. Word for word, Jesus quotes the Bible when confronted with the option to believe a lie. This example teaches us that God’s Word is like a fountain that continually flows; it is relevant and personal. We can both hear it and read it in the Bible. We all know that we can learn a lot from literature. However, few believe that books can literally speak to you in the moment. The Bible offers just that.
When COVID19 started, Erica and I were ready. We have had such bulletproof faith about our family’s health. It was almost like we had been through a pandemic boot camp with our daughter. Our experience with her and how it drove us to the voice of God gave us assurance that He was in control. No matter what is going on around us (or even in our own home), we can trust that God is speaking and that is all that matters.
Portions of this article are taken from Robin’s new book: How To Be Made Whole which chronicles the profound message of God’s acceptance and control of our lives.
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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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