Adoption Brings Meaning
This family epitomizes the concept of our blog. Adopting kids from all over the world that were rejected based on this physical disabilities. A must watch:
One Day At A Time
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.
How Does Prayer Work?
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. Here are some thoughts on prayer. These are raw and unedited. I welcome your comments and/or questions to help me refine the writing.
My uncle Greg praying over me.
I have a huge family and one of the things they love to do is pray. My dad’s mom is what we call a prayer warrior! She whips her kids that don’t pray and they are grown men and women. When this woman opens her mouth angels and demons turn an ear. While Erica was pregnant with Kennady, we called her and all my aunts, uncles, cousins, friends, neighbors and any one else that come over. We gathered in my parents large living room and stated the entire scenario of our baby girl’s situation. A few people quoted scripture and then we began to pray. We prayed specifically for God to heal our baby’s brain, for a speedy delivery, health and prosperity.
After every prayer session, we would go back for a subsequent sonogram. Each sonogram reported that the condition had gotten worse. Our daughter’s head was swelling at a rapid pace and there was no sign of brain development. These accounts brutally challenged our faith. Until this point in my life, I had never experience such a brutal denial from God. To passionately pray and feel like you made ‘headway’ with God and then go to the doctor and hear snickering from the devil as the sonographer bluntly states that fluid on the brain was increasing confused our faith.
Something was not adding up. We were praying specific prayers but they were specifically not being answered. We immediately started asking ourselves questions like: Were we too bad of sinners? Were we praying the right prayers? Were we not praying enough? Did we need to get more people to pray? Answering these questions and thousands of others like it produce new levels of faith in our lives. We can never get to these questions until we personally are thrust into the situation. When there is a mountain of pain and silence from God, we either get closer to Him through revelation or our anger drives us farther away. Even though we were not getting the results we looked for, we continued to pray through the diversity.
Questioning God honestly expresses your concern, frustration, and distress. Jesus says that our Father knows what we need from Him before we even ask[1]. Therefore, it is ignorant to fake like we are doing perfectly well before God all the while we are broken inside. While counseling with members of my church and meeting in small groups, I find that most people think they are being honest with God when in reality that is not the case. In actuality, they are not even being honest with themselves, much less God. Most of the time, God listens to prayers laced with hidden sin, no repentance, memorized clichés, and self promoting requests.
First, in dishonest prayers, we are not open about our hidden sin. We either do not see it, or we are trying to hide it and act like it does not matter. We are afraid of facing life without the pleasure it provides. We are addicted to the cheap reward of sin and can not see the benefits of purity much less the eternal consequence. However, many of us love God and we find ways of hiding in our own Garden of Eden like Adam and Eve did after eating the fruit[2]. God is looking for our honesty just like He searched for Adam and Eve that day. It is in our honest heart felt prayers toward God that true progress is made in our relationship with Him. When we choose to reveal our sin to him, it gives Him open access to forgive us. Without our permission, God’s hands are tied. Psalms 8:6 says, “You (God) have given him (man) dominion over the works of your hands; You have put all things under his feet. (ESV)” God creates the world in such a way that humans possess the authority to choose whom they will serve. God does not barge into our spiritual or natural lives and dictate what the day’s schedule will be. However, if we open up our schedule to Him, He is more than willing and able to work on our behalf.
Regardless of the good works we are achieving in life, if we continue a life of sin hidden from God, we are cheating God and life. My definition of integrity is purity and dependability. Many of our prayers lack integrity. We pray about all the things we need and want, and think are required for ministry. All the while we look over the anger we have for the friend on the praise team or the softball team. We hide the lust we have been playing with at work, the lingering looks and the gentle suggestions. We avoid talking to God about the business deal that needs a little cover up, the tax return that needs a little flubbing. We think that God has not listened to every whisper or text message, every email or phone call. God has listened, read, and watched every action big or small. He knows every flagrant foul, white lie, brushing of bodies, and website logged onto. Yet, when we talk to Him as Christians, we often avoid those references.
Our generation is losing our grasp on the reality of hell. The preaching and teaching of our leadership, for the most part, has drifted from wages of sin and rewards of grace in eternity. Most messages, sermons, and books are simply how to make it ‘today’. Our thoughts and concerns of eternity seem to be placed on the back burner. The Bible mentions there will be a generation that wants its ears scratched, meaning we don’t want honest, hard-hitting truth about the sin we are living in[3]. We want messages about how we can get out of the mess we are in. In truth, both of these are intrinsically related. The majority of the mess we are in is because of the sin we are in. When we are repulsed and convicted of our sin, turn from our wicked ways, then we will hear from God, He will forgive us and our lives will begin a slow turning around. The Old Testament establishes this concept and the New Testament reaffirms it[4].
When we reach a breaking point in our life sin reveals itself. If it is not revealed, you search your life like a starving mad man trying to find anything that could have caused such an awful turn of events. Thank God for this. In Jesus’ most famous sermon, he talks about the horrible side of sin and tells his followers to do everything possible to avoid sin. He suggests we should even poke our eye out or cut off our arm if those cause us to sin[5].
Second, in dishonest prayers, we do not ask for what we truly need. We ask for things we want. In reality, our needs and wants are often different. When we are honest in our prayers to God, we ask for things like purity not pleasure. We ask for authenticity, integrity, and help with our temptations. For example in our marriage, we should seek strength to be honest with our spouse instead of asking for a better marriage. Because often when we pray for a ‘better marriage’ what we are really asking is for God to heal the marriage without us changing or being honest with our spouse. Dishonest prayers are prayers for magic. We want God to perform a supernatural act that will hide all of our inconsistencies. Sure, God has that power, however, he desires our honest prayers that reveal to him acknowledgment of our sin and a desire for life change. We want no pain, no discomfort, no brokenness, and inconsistency. God does not want it as the end result, however, He allows portions of it
Honest prayers acknowledge the pain that we are going through and asks God for grace to see us through the breaking point. Honest prayers speak positive words of faith. We should not deny the pain or fake like it does not exist. We should address it. Face the brokenness head-on. God knows about it, you know about it, and the devil knows about. When we act like it does not exist, we are shortchanging the situation. God’s power is not intimidated by the size and scope of your problem. In fact, asking God for help in desperate situations actually honors God. Your honest prayer in essence says, “God, I believe you are big enough to do anything I need, and you actually care enough to act on my behalf.”
At our point of brokenness with Kennady, our prayers began to change. I remember waiting in the hospital and uttering small pulses of adoration to God. I no longer wanted to wait until a scheduled session with a formal outline. In the heat of the moment, prayer returns to its natural intent which is communicating. Unfortunately, most of the time it takes brutal life experience for brutal honesty to show up in our prayers. Both Erica and I began journaling our prayers also. Each night before going to sleep, we would pull out our notebooks and pour out our hearts onto the paper. We would passionately and rapidly express to God our deepest worship and concerns. Looking back at some of the pages of prayers, it amazes me at the content of our worship. Praising and worshipping God through our journal ushered us through a dark valley of life. Our prayer times at the church and with family literally carried us over hurdles of surgery, ICU, learning how to administer medication and doctor visits. Erica experienced the doctor visit from hell when a genetic doctor told her to expect Kennady to be abused sexually when she entered school. After hearing something like that you either want to reach over and slap her around or just lay over and give up unless prayer is involved. We continually tell God that we are unable to do this. “We can not make it, Lord.” God continues to tell us, “No, you can’t without me. However, if you will stick with me, we can do this together.”
Prayer not only helped us deal with doctors, but also with the people around us. When Kennedy was an infant, no one recognized her disability. With the VP Shunt surgery, the swelling in her head greatly reduced and most people did not recognize her disability. However, as she gets older, the secret is out. Erica strolls through the grocery store pulling a cart with groceries and two blonde-headed monkeys jumping around and pushing Kennady in her wheel chair. The looks never cease and we can’t figure out if they are staring at Kennady’s condition or wondering why we had so many kids after the fact. Prayer has helped us laugh at situations like these. God has given us the grace through prayer.
Fortunately for me, I cannot tell you what brokenness would be like without prayer. From my childhood, I have been taught the power of intimate conversations with God. I have walked through seasons of life where my conversations with God were very sparse and not very sincere. However, brokenness has a way My prayers have taken multiple forms. Different expressions, styles, lengths, volumes and contents of prayer each have their place as I wade through all of the challenges of life. I know that even with prayer there are times that the brokenness seems to be extremely difficult.
Randy Phillips, who at the time was my boss, pastor, and friend, pulled me into his office a few weeks after the news and said, “What are you going to do about this report?” I was shocked to hear such a statement. What do you mean, “What am I going to do!” I thought. There is not anything I can do at this point. He handed me a book called, Intercessory Prayer, by Dutch Sheets and calmly stated, “Read this book.” He went on to mention that it was time for me to establish prayer as the foundation for our actions. That God was able to heal our daughter and that if it was going to happen that we had to pray for it to happen. God does not just do things without our prayerful release. If God choose not to heal, then He would give us the grace to deal with it. I took the book home and read it in two days. I devoured the concept of intercessory prayer like never before and we began to hold prayer meetings specifically for the healing of our baby. It seemed we had all the elements of faith, hope, and love that were needed. However, I prayed and God was turning his head in denial. Later, I would learn that God turned his head to my request because a much better way lurked around the corner.
In the comment section, please share your story of prayer OR ask questions that this might have stirred up.
On the Other Hand…
So, I (Erica) thought I would discuss how life is hard and the real stuff about having a child with special needs, then I thought I would talk about how we deal with it…so here it goes.
They say that having a child with disabilities can break your marriage. There are a lot of stats thrown around that are a bunch of bologna (which naturally infers disgustingness)
I read a great article, that was actually researched to some degree, on divorce in families with special needs children. It actually seems as though the stats that we have been told for so long aren’t quite as devastating as you might have thought. In some cases, children with special needs can actually make a marriage stronger.
On our blog, we often say that Kennady is a blessing, and she is, and focus on all the good that life with her brings, which she does.
However, there are plenty of times that just plain stink.
It IS hard having a child with special needs. It isn’t always cheery, fuzzy and warm.
I don’t want to turn this into a complaint session, primarily because it is not a complaint, simply a statement of truth; secondly, because I strongly dislike whining, complaining and general martyrdom for things that one should not attain martyr status for.
Recently, I was watching a documentary on vaccines and there was a mother on there that had a son with Autism. She made a statement during the documentary that was something along the lines of {people say that children with special needs are a blessing, but it isn’t. It isn’t a blessing to have a child that isn’t the way that they want to be, or that we would want them to be.}
I have thought about it before, about how our perspective isn’t the same as other peoples. This really hit home for me. It was one of those uummpfff moments. A punch to the gut in your brain. I don’t have a child that is mobile and could potentially harm themselves or someone else. We don’t experience lots of really hard things that other families do, but we have our own times.
Our focus through this blog, is to bring to light the joy our children bring us, regardless of their abilities. This joy that we are shinning a light on, often leaves out the reality of the shadows.
No matter how much joy our children bring us, we have some tough mountains to climb.
For some families, it is making sure you have extra locks in place so that your child doesn’t run out in the middle of the night.
For others, it is sleeping with your child beside you every night of their life to ensure that they are able to breath.
There is an immeasurable list of things families will do to preserve life in a way that keeps everyone the happiest, and if at all possible, sane.
Here is a list of things that I find very frustrating/hard/crappy/inconvenient, about life with our special needs child.
1.) Going out in public and needing to change a diaper of a child bigger than the infant/toddler changing table is made for.
2.) Your husband having to change diapers on his adolescent daughter.
3.) Puberty
4.) Isolation – Because you can’t just leave your child with complex needs with anyone.
5.) The unknown
6.) Accessibility in stores, restaurants, other people’s homes
7.) The large amounts of supplies, kits and randomness needed at all times
8.) D.N.R. orders (Do Not Resuscitate)
9.) Medication times: 6a.m., 2p.m., 10p.m. – always
10.) Not being able to know how my child feels specifically
All of these things are part of our daily lives and things we have to process.
How we cope with the reality is pretty straight forward. We pray, admit our shortcomings, we are open about our fears, we surround ourselves with our church and family, and we laugh…a lot.
Robin and I deal with a lot of things through humor. It’s just how we make it through.
When we started tossing around the idea of a blog, we came up with some of the following titles. We ended up with Made Meaningful.
Some of these are funny. Some are serious. Hopefully, you will laugh. If you are offended, please skip to the next title, maybe it will un-offend you.
- The grass is yellow on our side
- Hearts that serve
- So you wanna have a kid…well he is going to be sick
- H.o.P.E. floats
- Life is beautiful
- Imperfectly beautiful
- Oh $&%@, I have a handicapped kid!
- Colorful
- Life Junction
- Empty promise
- Awkward!
- A Special Heart
- Crossing a/the broken bridge
- Bridging brokenness
- Life Is Beautiful
- If you thought the first year of marriage was hell…
- A meaningful life
Life here in our house is probably a bit skewed to the humor side. I have often said that if Kennady could talk, we would all be in trouble.
One of Robin’s favorite things to say when I call home while I am out, is, “Kennady is throwing up, Jude has a fever and Avery is feeding the puppy chocolate”. None of which are true, but some how that sick mentality seems to be funny.
That, or, he answers the phone as if he is just waking up from some long winters nap. “uh…hello…”
Basically, we fight, we laugh, we cry, we laugh…uhh is this turning into an Alanis Morissette song??
The bottom line, having kids with special needs is hard. Making the choice to embrace what we have and focus on the good is far better than living in the darkness of resentment and “life isn’t fair”.
Testimony Against Wrongful Birth
I (Robin) was asked by Texas Alliance for Life testify before a Texas Senate committee that is considering a bill that will close the door for ‘wrongful birth’ lawsuits. In other words, parents can sue doctors, nurses, hospitals (any medical person or place) because the parent wasn’t notified of their child’s disability and would have aborted if they would have known. They can sue because their child was ‘wrongfully born’. This is what I will read before them:
Erica and I were expecting our first child in September of 2001. We were completely excited about the potential. A home birth was planned. We had dreams of our child taking her first steps. Growing up with friends at church. Getting her driver’s license. Going to college. The list goes on and on.
After we crossed the 30th week of pregnancy, we visited the Austin Community College Nursing program for a routine sonogram. Our thoughts were simple. Let’s just make sure everything is ok. We were convinced that there would be no complications because Erica’s pregnancy had been trouble free. In fact, she didn’t even suffer from morning sickness, pains, or any other common attribute of pregnancy. The sonogram was taking a very long time, and they weren’t cluing us in on the fact that they were seeing something very abnormal. Almost an hour passed when the director of the program came in and told us that they would have to send us to a specialist because “they weren’t seeing something that they should”.
That afternoon we visited Perinatologist Dr. David Berry in Austin, TX for the official ruling. All our dreams and visions for our child came to a crashing halt when we sat in Dr. Berry’s office. His team had viewed our sonogram and confirmed the fears of the ACC team. Our daughter’s brain was almost non-existent. There was so much fluid in her head that the only portion of her brain was crushed against the skull. The prognosis was brutal. “Your daughter might not be born alive or live very long after birth. She could possibly be blind, deaf, and severely disabled. Most likely, there will be learning disabilities and mental retardation.”
We were given two options. The first option was to schedule a C-section at 38 weeks and go through with the original plan of life with all the associated negatives. The other option was to have a late term abortion. These were not legal in Texas, but we were given the option of traveling to Kansas or other states to end the life of our daughter before she was born.
It took us about 10 seconds to make that decision. We scheduled the C-Section.
She was born two days after Thanksgiving, November 24, 2001. After birth a MRI revealed that her condition was actually much worse than they originally thought. Instead of only hydrocephalus, she, also, had Alobar Holoprosencephaly. The brain surgeon told us she could be expected to live anywhere from 6 months to two years (if she was lucky). He gave us another choice. Surgery would ‘prolong’ the inevitable. Choosing to install a shunt in her brain would ease her pain and prolong life to two years, or we could choose not to install the shunt and let ‘nature takes it course in the next few months’.
It took us about 20 seconds to make this decision. The surgery happened the next morning.
While in the hospital, one doctor actually reported that our daughter would not have a ‘meaningful life’. After obtaining the medical reports in 2012, we actually saw those words in the official records. Our daughter “would not have a meaningful life”.
Kennady celebrated her 11 year birthday in November. She is the happiest fifth grader you have ever seen in a wheelchair. She speaks to us with a contagious smile.
Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store. You would have an extremely difficult time making a case for a “meaningless” life right now. She speaks volumes without words to all who will take the time to get to know her.
Suing a medical professional because your child was born with a disability is like suing CBS Sports because the 49ers just lost the Super Bowl….as if the network knew definitively who was going to win or not. If you had known your team was going to lose, you would not have watched the game. What does it say about your dedication to the team if you will drop everything at the sight of difficulty? If all odds are against the team and it looks as though they will lose, the team will still want to play and give it their best (regardless of what the TV network or the fair weather fans have to say about it). The game is really up to the team. The disability and chance for life is truly owned by the child. It is his or her right to have a chance at life to live or die naturally. Doctors are often wrong. Prognoses are often wrong. Who are we to usurp our authority into a situation where only God owns the rights?
One of the biggest oxymorons has to be a: “selfish parent”. Why do we ‘have kids’? Are they for our benefit? Are they so we can have a toy or someone who gives love to us? Are we satisfied because they are smart or because they score the winning goal? Are they beautiful because they fit the American/Hollywood standard?
As parents, we take ALL responsibility for that child until that child has reached the age of personal responsibility. If that child never reaches that age, then you, as the parent, must own that responsibility. That is part of living in the world in which we live. Things don’t go as planned. Hurdles, mountains, and deserts are to be crossed. When these challenges come our way, we don’t look to the nearest scapegoat in order to make ourselves feel better or skirt our responsibility. No, we do the right thing. We love our kids and raise them to be all they can be. We learn from them. We are changed into better people because we have allowed brokenness to be meaningful.
Read Erica’s Honest and Funny Response
The boys make a movie
Norman Rockwell Christmas?
From our New Friends: The Browns
So yeah, this isn’t the year of the Norman Rockwell Christmas for us. In fact, every attempt I’ve made at celebrating the Advent season has been derailed in some fashion. I’ve yet to be able to sit through the entirety of any service or function that is Christmas related. That’s been tough on my soul, as all I want is for life to slow down enough for us as a family to be able to enjoy some (dare I say, “leisure”) time together and to celebrate all that the birth of Christ has meant for our family, especially this year.
But just like with all those prenatal prayers when I asked God to heal Pearl, he is up to something different than what my heart desires. And just like that season of brokenhearted prayers when he said “no” over and over again, I can’t see what could possibly be better than what I am asking. Alas, my head trusts what my heart doesn’t. That tends to be the case most days right now.
It will be Christmas Eve by the time I am finished writing and posting this, and we are at Vanderbilt Children’s Hospital again. Pearl has pneumonia and that is not something to be taken lightly for a child with HPE. In fact, it can often be fatal. She was admitted on Saturday, so the doctors can be extremely proactive on the front end to battle this. She’s had a rough week and the last 2 days especially have been rough. Tonight, she is resting well. They have adjusted her medication and she’s getting heavy doses of a lot of drugs to try and battle seizures that are brought on by pneumonia. The hope is to once again balance the medication in such a way that her seizures are suppressed, but to not medicate her to the point of affecting her breathing. It’s a fairly calculated balance that sometimes takes a few days to dial in. We need to get rid of the fluid build up in her lungs, and that is a fairly urgent goal.
The older kids are doing well. Since we’ve only been here for 2 days now, the weight of the family being divided hasn’t yet started to take its toll. I imagine a bit of the weight will set in on Christmas morning when some of us wake up at home, and some of us wake up at Vanderbilt. I’m not sure what that’s going to look like yet. It’s not as though the Christmas morning gift giving is a huge part of our family celebration but it’s a huge part to the kids, so I’m sure we’ll figure something out.
I’d be lying if I said I wasn’t missing the sentimentality that is usually associated with this time of year, and that is tough. I know it’s all silly stuff, some of which is completely meaningless, but it’s silly stuff than often reflects deeper feelings. I wish I could clearly articulate to you why God is not allowing the sentimental warmth this year, and why he has instead, chosen this for us. I can still see gratitude way off in the distance. I can even see clearly with my eyes all that we have to be grateful for. Even as I type this, I’m sitting in a room at Vanderbilt… Vanderbilt…A prestigious medical community that is right in my back yard! My family isn’t split by hours of travel between our home and here. My daughter is here with me, about 5 feet away. I never dreamt that I would be with her on Christmas Eve. It’s incredible, though my heart is still pounding with frustration, worry, and entitlement.
So this Christmas is hard. This year is hard. Everything’s hard. But God continues to mold our hearts to be more like his. He continues to say “no” to what we ask, and instead offers us something richer and better than we could ever fathom. He continues to keep us at bay from our own desires and he uses his rod and his staff to shepherd us along the path. He continues to watch over all 3 of our children, caring for them and transforming their character to be more like his. He continues to provide for us, and continues to weed through all that needs to change in our hearts. He continues to give us difficulty, and then he equips us for it, and often times, on the backend, shows us what he was up to the whole time. I’ll take it. I’ll take this life. I’ll take a split family Christmas over sentimentality, if that’s what he’s doing. Though my heart can’t see it, my mind can clearly see that whatever he is doing is better than what I would have chosen for myself.
So Merry Christmas from The Brown Family! Thank you for participating in this life with us. Thank you for not merely observing. Thanks for taking the time to read, and please pray for a quick recovery for Pearl. She needs to clear out this fluid before it get’s worse.
-Eric
The Day You were born
This is the day your were born.
Your beautiful face, your sweet cry, was music to our hearts.
H.o.P.E. was born that day.
Hope that, no matter what they said, we would see more days with you than they thought.
Hope that, no matter the outcome, we would stand firm that you were here for a purpose.
Purpose has been pouring out of you from the start and woven it’s way through the fabric of our souls, transforming our lives.
Looking back it is hard to imagine we would be where we are now.
Holding you and seeing you take each new baby step forward.
The joy that floods our hearts on this day has no words, simply a feeling.
A feeling of love with no boundaries, rich joy and a heart that is open wide to possibilities
These are the gifts you give us just being you.
No words, just smiles, attempts at reaching and holding.
The journey has been long and hard, but the joy you bring outweighs every moment that was tough.
On this 11th birthday and 11th full year of life, we give thanks for an overflow of life that we never dreamed we could have been blessed with.
Happy Birthday to you, sweet girl.
Kennady Is Thankful
Here are some thoughts on Thanksgiving from Kennady’s life.
Why Knowing God is so Important
In our last post, I (Robin) wrote about how we look at death. After a discussion with a new friend, I realized that how we look at ‘good and bad’ also dramatically affects how we live.
We all know that there is a progression with life. The older you get, the wiser you get. With that knowledge progression comes a different perspective of what is bad. For example, a child is distraught over not getting candy or cries profusely when a $3 plastic toy breaks. The parent comforts the kid, however, she knows that the situation is really not ‘bad’.
The next level happens around adolescents/teens. Pimples are the end of the world. They are horrible. Then, older teens and college students have another set of good and bad. I have counseled several college students lately that have struggled with losing a boyfriend or girlfriend. Their world is crumbling all around them. They are swimming in a sea of ‘bad’. Again, as older adults, we look to these situations and think they aren’t that bad.
The reason we think things are not bad is because of our experience of much worse things. When life gets progressively worse, then when we see minor issues: broken toys, pimples, and girlfriends and think of them as small hurdles.
So what happens to an adult when rape, incest, murder, disease, bankruptcy, suffering children or other haunting life situations happen? What is our perspective on life? Especially, from a ‘God believing’, faith perspective… Why does God allow these ‘real’ bad things to happen? How do we deal with them?
The truth is that they are bad, and God does allow them.
What is His reason for allowing them? Does he look down at us (when facing a huge challenge) and have the same perspective we do of our 4 year old when she is crying and not getting her way? Does he allow it because he thinks it is not that bad, and we just need to get over it?
All those questions lead us to this… If he allows something like rape is that because he has seen something (in his all knowing power) much worse than rape and therefore, he doesn’t really think that we should fret over it?
No. At some point there is a end to the ‘bad’ scale and getting over bad is not simply graduating to the next worse thing. God is able to handle all bad things because he has a clear understanding of how Good He is. At some point, we will find the ability to deal with difficulty when we get a better picture of the power of God…not more life experience. The School of Hard Knocks does not have a solution for everything.
When we suffer and simply have no idea of how to deal with the pain, then we should rest in the fact that there is more God to know. The good of His attributes are more powerful than the bad of situations. If we aren’t living in that realm of consciousness, then we pray. We pray for a better understanding and revelation of God before we pray for bad things to go away. If we are more like God, then we understand like He understands. We live in the truth that strength and power and are able to face any situation.
Sometimes, God’s power overturns wrong here on the earth and we experience a supernatural miracle. The wrong is reversed. At other times, God doesn’t reverse the wrong on earth but he gives us the grace to live through the situation.
Heaven is the ultimate culmination of God’s goodness and where all wrong is reversed. Tears are dried. Timothy Keller says in The Reason For God,
The Biblical view of things is Resurrection…not a future that is just a consolation for the life we never had but a restoration of the life you always wanted. This means that every horrible thing that ever happened will not only be undone and repaired but will in some way make the eventual glory and joy even greater…
At the final scene of Lord of the Rings, Sam realizes that his friend Gandolf was not dead but alive. He cries, “I thought you were dead! But then I thought I was dead myself. Is everything sad going to come untrue?” The answer of Christianity to that question is…yes. Everything sad is going to come untrue and it will somehow be greater for having once been broken and lost.
This is our hope now. When we face the reality of our broken world, we find peace in the future destination of Heaven. We pray “Maranatha”. Come ever so quickly, Lord Jesus. We long for the presence of the Lord. We long for more revelation of God’s attributes. We desire to be more like Him. And if that is where we find ourselves…where else would we want to be?
What People are Saying