One night when Kennady was in the hospital, Kennady’s home health nurse came up and sat with her so I (Erica) could go out get some dinner and feel the sun on my skin. On my way out, I decided to step in to the gift shop because they had these big shiny red balloons that said “SALE”, which is an instant magnet for most women.
I proceeded to call my husband and tell him that this store had a very cute necklace and that it was thirty percent off, which made it only a mere thirteen dollars, and that seeing as we are in such a stressful time I should really do some sympathy shopping and buy this for myself.
Alas, this ploy did not work and I made myself leave the store empty-handed, content that I could use my money to buy myself food to put in my belly instead.
On my way out the door, there stood sweet Jesse. Jesse gave birth to her precious baby boy Wyatt, and her second child with Cystic Fibrosis, just a little over two weeks ago. She was on her way in to see Wyatt in the NICU and I was on my way out to get something to eat.
We stopped and chatted for a while and began to discuss our children and their special needs and how living a life with a special needs child shapes you in so many ways you never realized it would or could.
One of the ways that this life is shaping us, is through us shaping our children and the next generation.
Robin and I feel strongly that the challenges we and our children face in this life will build our character and make us stronger, if we allow it.
Character: 1 one of the attributes or features that make up and distinguish the individual 2 the detectable expression of the action of a gene or group of genes 3 the complex of mental and ethical traits marking and often individualizing a person, group, or nation
Wheew! That is a lot of things to cover, but we will focus on just one point this time around. Character: One of the attributes or features that make up and distinguish the individual.
Character traits can be good or bad, strong or weak, life-giving for life-taking.
Our boys both have a sister with multiple special needs, food allergies and last but not least, they are preacher kids (holla back atcha if you know what I mean).
Don’t you hate it when you get stressed out on your day off? Seems like such a waste.
I (Robin) have found that the stillness or lack of work often makes us feel the true condition of our heart and mind. We do not have the busyness to distract us and mask the pain.
On a Friday morning awhile back (I take Fridays off), I began to feel the pressure of anxiety creep into my consciousness. It wasn’t linked to specific thoughts or pressures of life. It was just a dull roar in the depths of my spirit. Why? I began to ask myself, “What did I leave unaccomplished this week?” Maybe I was getting stressed because I forgot something. Maybe I did something wrong or maybe I didn’t finish something successfully. What was left to accomplish before Sunday? Maybe I needed to ‘get something done’ before our services on Sunday. Is someone mad at me and I need to resolve it? I began to focus on the mystery and try to figure it out. Thinking that if I could just resolve the issue, then everything would be at peace. All these thoughts came before my feet hit the floor. I had only been awake about 30 seconds. So this is what I did…
This is the fifth installment in a series of posts straight from our journal (handwritten). When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling. Click here to start reading Journal from the beginning. Here is what we said:
DAY FOUR – September 28, 2001 – (Erica)
A Prayer…
Trying to take it all in.
That would basically sum up what I am doing. Yesterday was the hardest day. The shock started wearing off. Denise (Phillips) called and talked to me to see how I was doing. It was so good to just talk to someone. She said that we have been given the peace that passes all understanding. It is so true.
You have given us such peace in what would otherwise be a traumatic situation. I thank you, Lord, for your strength and I believe whole heartedly that this child and this situation is going to bring you awesome glory. Thank you for allowing us to be a part of that.
It is so hard and so easy at the same time. Please continue to draw Robin and I closer to you and closer to each other; so that we can find our refuge and strength solely in you. Let us see this through spiritual eyes and not the eyes of man.
Thank you for sending us such abundant support through family and friends. Thank you for a healthy beautiful baby girl.
<3 E.
2013 Commentary Unfortunately, this is the last installment from Erica for quite a while. She wrote a few posts and then didn’t write again until mid-October (a month later). I (robin) continued writing and will post those in coming days. God answered her prayers about her marriage. He used this situation to bring our relationship closely together. The divorce rate for Special Needs parents is a lot higher than for parents of typical kids. We give God the honor for what He continues to do in our life and marriage.
When it is late at night and I have had a rough day, I go into Kennady’s room. She is laying there watching TV. Giggling and rolling around. The lights are dim and the atmosphere is calming. No matter what I have gone through that day or what struggles I am concerned about in the future, Kennady’s reality is much worse. However, her demeanor is so comforting.
Throughout the day, she has been unable to tell anyone what she wants. She has been unable to go where she wants…when she wants. We give her simple choices by holding up two objects and she often picks what she wants by gazing at one longer than the other. However, we are unable to know what choices she wants to make. I can’t imagine how frustrating it must be for her to want something and be unable to tell us. Sometimes she is in pain and we have to start a long process of elimination. For example, if her leg is hurting and she is crying we will start working on other parts of her body. We might give up before we reach her leg and alleviate the pain. Kennady is without most of the “life incentives” we have. No future of an education, career, a boyfriend/husband, driving a car, playing sports, etc. I could go on and on about how her life is a struggle and difficult, but I think most people get the picture.
When considering my day and the concerns that I have, they seem minor when I go into Kennady’s room. They seem to fall off my shoulders when I walk through the door. What little might still be clinging to me melts as I wrap my arms around her and she starts to hold me tight. She starts to comfort me by nuzzling her nose and mouth into my neck as to say, “Don’t worry, Dad. I know what it is like to struggle through the day. Everything is going to be ok.”
She is ok with life. She keeps smiling in the face of adversity. She seems to have mastered Philippians 4:11-13
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.
She teaches her father/pastor a spiritual lesson.
Thank you, Jesus for giving me Kennady. I can’t imagine the Love of God that she must feel inside. She is so content. The good of God strongly defeats the pain and suffering of the world. The evidence of God: the Fruit of the Spirit is always in season in her life! What an unlikely place to hear, feel, and experience the power of God! In our weakness, he is strong!
My dear friend and mentor, Randy Phillips wrote this song several years ago. Never has a song resonated with me (Robin) more than this. I have heard it sung over and over, however, to read the lyrics as a poem is even richer to me at this point.
Blessing in the Thorn
I read about a man of God
Who gloried in his weakness
And I wish that I could be
More like Him and less like me
Am I to blame for what I’m not
Or is pain the way God teaches me to grow
I need to know
When does the thorn become a blessing
When does the pain become a friend
When does the weakness make me stronger
When does my faith make me whole again
I want to feel His arms around me
In the middle of my raging storm
So that I can see the blessing in the thorn
I’ve heard it said the strength of Christ
Is perfect in my weakness
And the more that I go through
The more I prove the promise true
His love will go to any length
And reaches even now to where I am
But tell me once again
Lord, I have to ask You
On the cross You suffered through
Was there a time You ever doubted
What You already knew.
Erica and I were shell-shocked a few hours after Kennady’s birth. We had the emotional exhilaration of birth. Seeing a new baby exit the womb and enter the world is one of the most impactful experiences I have witnessed. Then, after the MRI, we received the news from Dr Wilson that our daughter not only had fluid on the brain (a condition with quite a bit of hope for a normal life), but she also had a condition that was immensely worse. Her brain did not divide into halves. They were unsure of what parts of her brain were actually developed and therefore could offer zero prognosis. At that point, we realized, barring a miracle, our daughter would be severely mentally retarded for her whole life.
The weight of that type of diagnosis and sort of ‘final word’ is difficult to explain. While in the womb, there was hope that when she was born everything would change. That the good news we were waiting for would finally show up and God would be glorified. This was the day we received the crushing blow of reality. God did not heal her in the womb.
Why does news like that seem so difficult? Later when I dissected the news itself and investigated why it felt like a ton of bricks, ironically something some thing very positive was revealed. News like that is horrible because of the fear it casts for the future. We had thoughts like: ‘she will never talk, she will never walk’, ‘she is going to need a wheelchair’, ‘what if I am still changing her diaper when she is 25 years old and I am 50’. All the angst and difficulty was in the future. All the bad news, difficulty, abnormality, and stress was technically months and years down the line.
If we looked at that day itself, her diagnosis had minimal effect. She laid cutely and quietly in her crib and for all intents and purposes was a ‘normal’ new born.
One of our heroes, Cindy Woldhagen, has a son with Down’s Syndrome. During this season of our life, Cindy was source of strength and inspiration. After Kennady’s diagnosis, she told us a statement that completely changed our outlook from that day forward. It was a simple statement. In fact, it is quite cliché. I had heard it for years and thought it was a neat little philosophy. However, when we stood in the church hallway that Sunday, she said it and it was like the heavens opened, beams of light shown down, and angels sang. She calmly said, “Robin, you have to take it day by day.” So simple yet so liberating. I felt peace flood my anguished heart and mind. I didn’t have to think about wheelchairs or adult diapers. All I had to do was care for my family today. That is it. That is all Kennady needed and all God expected.
This is not just a good philosophy. These words originally came from Jesus during his most famous sermon. When He talks about the troubles of life, He says,
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.” Matthew 6:34 NLT
A few scriptures before that, He is teaching us how to pray and He says,
“Give us today the food we need” Matthew 6:11 NLT
He was precise in His wording. He could have said, “Give us the food we need for the next week or month…” However, throughout this sermon, He emphasizes daily priority. In our modern culture, we are driven focus on what we don’t have today and therefore do all we can to obtain more in the future. Instead, Jesus is saying look at what you have now and use it to the best of your ability. In fact, you might not even be around tomorrow. If you are around tomorrow, then deal with it then.
Many times in scripture Jesus’ schedule is interrupted by individuals needing assistance. He often dropped his plans and healed, scolded, delivered, saved, related to whoever was there. He had a lot of very important work to do. All the while, He knew that he was facing the pressure of the cross in the near future. He knew that the cross was inescapable. I am sure He had human thoughts of “I wonder if these disciples are actually going to get the job done.” “The cross is going to take me away from the progress being made.” Jesus was well aware of His own path of death. If He was to face accusation, persecution, and death, that path was certain to lead to beating, public humility, and at the end was hands and feet being physically nailed to wood and then suspended in mid air. The Romans demonstrated this method of capital punishment often.
For a moment, put yourself in Jesus’ shoes. How stressful would that be? We struggle with the stress of traffic and bills, much less trying to deal with being drug to the town square and brutally murdered in front of crying family and friends, embarrassed strangers, and laughing enemies. Most likely we would struggle with daily operations. Studying for tests at school, preparing for work, or finishing projects would be extremely difficult. Jesus knew that the prospect of future disappointment and of immanent danger could cripple your effectiveness today.
This was not just because He is God, but because He personally experienced it as a human Himself.
He knew you needed to be effective today, so He preaches this powerful truth. Let tomorrow worry about itself. Get it right today. Nail today.
Recently, I got a call from a mom. “Please come and speak with my son, Joe. He woke up this morning hung-over. He is facing a serious court date soon. I’m afraid that he is going to seriously injure himself or others. Can you come to the house and speak to him? He really wants to do right, but is fighting the reality of a lot of scary scenarios.” I thought for a moment, looked at my busy schedule and decided to go meet with him. As I sat in their living room and discussed the broken past and depressing future, the words of Jesus began ringing in my ears. At 20 years of age, Joe faced a trial the next week that could possibly put him in prison for 10 years. He sat with a heavy heart, knowing that he had failed last night in a drunken stooper. He knew what was right, yet he was losing a fight with a demon of alcoholic addiction. Demons whisper in his ear, “If you are only 6 more days in the free world, why not just end with a huge party. You can clean up in jail.”
When facing the depression of 10 years incarcerated, a few more days of freedom, and no relationship with God, you are going to lose that battle. I told Joe that day to forget the prison sentence, forget next week, forget tomorrow.
“Joe, you need to focus on God for this moment. You need to serve God today. We are about to pray and when we do we are going to ask God to give you the power to overcome evil today. Then, tomorrow, you are going to wake up again and pray for tomorrow. However, the question you need to figure out is…’am I going to get drunk tonight.’ To answer that question ‘no’, then you need to ask God to give you strength and then set up some boundaries for today that will guard you.”
Why do we let the prospect of a difficult future cripple our potential for today? What Erica and I have found out is that God gives us exactly what we can handle each day. He incrementally gives us what we can handle. Some days, we think “are you sure God?” It seems extremely difficult, but we pray for God’s grace.
Each time he said,“My grace is all you need. My power works best in weakness.”2 Corinthians 12:9 NLT
No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it. 1 Corinthians 10:13 NLT
In Joe’s example, it is easy to see that temptation is being battled. However, in Erica and my case, there is equal pressure to sin. We were not tempted to go get loaded that night, but we were tempted to doubt God. We were tempted to put ourselves first and tempted to believe that our comfort was most important over God’s sovereign plan. After all the devastation of our daughter’s illness was that our entire life was going to change and that every dream we thought was coming to pass with the birth of our child was turning into a nightmare. Even in that dark scenario, we knew that God was going to be there with His sufficient grace. Always allowing us to feel the pressure and giving us a choice.
People look at our family and how we handle situations and
tell us, “We could never do what you do. It’s amazing how strong you are.” What they don’t realize is that God has given us all daily challenges. Each day we grow stronger and stronger. The truth is that Erica and I are very strong. However, that strength is not from us and it didn’t happen overnight. It comes from God and it comes day by day. All parts of God’s creation grow in their own pace, yet each day is vital to its health and growth. How we steward over each day determines where we end up in the future. Just as walls are built one brick at a time, we link together days with God until we look back and realize He has created in us a wall of strength.
Just as we should never allow the unknown of tomorrow influence our success, we also should never let the regrets of yesterday affect today. Some folks’ battle with the past severely inhibits their potential. Fear of failure today is born out of yesterday’s mishaps. The power of Jesus Christ is able to erase the sin and brokenness of our past.
Repent therefore, and turn again, that your sins may be blotted out, that times of refreshing may come from the presence of the Lord, and that he may send the Christ appointed for you, Jesus, whom heaven must receive until the time for restoring all the things about which God spoke by the mouth of his holy prophets long ago. Acts 3:19-21 ESV
For everyone who has been born of God overcomes the world. And this is the victory that has overcome the world—our faith. 1 John 5:4 ESV
If you are struggling with bad news or a diagnosis, then do not let it cripple you now! Pray for God to bring the mercy to forgive and the grace to empower you. This will give you the fuel to not only ‘get through’ today, but conquer it and be ready for tomorrow when it gets here.
I (robin) am working on a non-fiction book proposal that will go along the same lines as our Made Meaningful ministry. From time to time, I post thoughts that will most likely end up in the book. These were some thoughts on prayer. (raw and unedited) I welcome your comments and/or questions to help me refine the writing.
Have you struggled with a future that looked impossible? How did you overcome that fear? Please share your thoughts.
Robin and I feel strongly that the challenges we and our children face in this life will build our character and make us stronger, if we allow it.
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