Tuesday, March 26, 2013

When it won’t stop

I don’t know anybody that can bear the uncontrollable crying of a baby. When the crying doesn’t stop, frustration, stress and anger are added to a sense of feeling trapped. How do you make it stop?

Crying babies are what trigger most events of inflicted brain trauma or shaken baby syndrome. 65% to 90% of offenders are males. Usually the father or mother's boyfriend. The men are usually in their early twenties.

Most of the children that are victims of shaken baby syndrome are boys and live in families that are at or below the poverty line.

Inflicted brain trauma is caused by direct blows to the head, dropping or throwing a child, and shaking a child.

Head trauma is the leading cause of death in child abuse cases in the United States.

The majority of victims of shaken baby syndrome are under a year old. They average from 3 to 8 months old.

At first, when someone resorts to shaking a baby to get her to stop crying, she cries more. But then stops as her brain is damaged from the violent shaking motion.

The force of shaking a baby causes the child's head to rotate uncontrollably on the neck because neck and shoulder muscles are not developed enough to provide any kind of support. Violent jerking motions make the brain pitch back and forth inside the skull bursting blood vessels and tearing brain tissue.

After the shaking stops, the brain swells compressing the injured tissue and damaged blood vessels further.

Here are some effects:

  • partial or total blindness
  • hearing loss
  • seizures
  • developmental delays
  • impaired intellect
  • speech and learning difficulties
  • problems with memory and attention
  • severe mental retardation
  • cerebral palsy

Sometimes a child that has been shaken looks normal. Symptoms may not be evident until the child enters school system where behavioral issues or learning disabilities become more observable by teachers and other learning professionals.

Development and education are hindered severely in the child that has most of the symptoms on the list. Language, vision, balance, motor skills, and coordination are all affected in a brain injured child. Intense physical and occupational therapy are required to help the affected child develop normal skills.

SBS is often fatal and causes sever brain damage and lifelong disabilities. My daughter is effected by most of the symptoms on the list. She has her hearing and does not have sever mental retardation.

I had a conversation with a friend the other day that asked me if I was, as a Christian, willing to extend forgiveness to the violent offender who inflicted shaken baby syndrome on her.

I’ve written about forgiveness in several places here. I admit that forgiveness has become a concept I can barely grasp. Allie has a lifelong disability and the one who did this to her is all ready out on the street and has most of his life back.

I’ll be honest with you. Sometimes I daydream about violence and vengeance. Other times I pray for this person and ask God to work in his life. I can’t imagine being him. He lives with the knowledge that he destroyed a little girl’s entire life. How do you come back from that?

Forgiveness from me would be a small thing, I think. I wonder how much it would really change things for the guy. With God all things are possible. This knowledge is the only thing that can make things better for the guy and this is something I want for the guy mainly because I can’t imagine what it would be like to live without hope.

Forgiveness is the only way to get to hope. You want it? Do something about it.

Tuesday, March 19, 2013

Heroic Motherhood

Susan is the biggest trooper. She’s embraced parenting Allie and held on with a relentless, unyielding grip. It’s more than motherly instinct. It’s mission. Between the two of us, she has most deeply recognized that God picked us for this task. That being selected by God for this mission at this time in our lives is a calling. Our calling. That God demonstrated His wisdom throughout our lives by preparing us for this moment time so we can be Allie's parents. 

Susan loves being the mom of a little girl again even if it’s the hardest thing that has ever happened. I always hear her say to Allie, “I love being your mommy."

Sunday, March 17, 2013

Our Story on Video

Our story played on screens all across Calvary Chapel Fort Lauderdale’s seven regional campuses this weekend.

The Charming and Beautiful Susan, Allie and I were privileged to work with the amazing video production team at Calvary.

Enjoy this video and let me know what you thought of it.

Wednesday, March 13, 2013

Helpless is the New Normal

Sometimes there's a warning. Spasmodic muscle activity, exaggerated startling at sudden noises, and panic are signs that a epileptic seizure is imminent. People who have seizures say that before one hits, a nausea-like sensation starts in the stomach then rises in waves through the chest and head. Sometimes consciousness and awareness are affected, sometimes not.

Sometimes there is no warning. Allie's little body seizes suddenly and violently in the dead of night or during school or at play. She’s been having seizures for over five years – ever since she emerged from a coma in a San Francisco pediatric intensive care unit.

Allie has brain damage so seizures are a part of life. An assault against her at ten months of age resulted in an oxygen deprived brain and coma that lasted ten days. She emerged from the coma as a quadriplegic with cerebral palsy. Since then, she's had seizures.

We’ve tried at least six different medicines to manage Allie's seizures, but we haven't had much luck. She used to have about one seizure a month. Now she has them in clusters of three in an eight hour period just about every three days.

There is nothing like the helplessness you feel when your child is having a seizure. We used to panic. Now we pray and provide as much comfort as we can. We let her know that we are there with her. We just say, "It's okay. It's okay, honey," over and over.

But it really isn’t okay. You want to give any solace you can to your child, but, actually, you are out of control and are tempted to totally lose it – you wish, sometimes, you could give up and let go. You just want to totally give in to the nervous breakdown lurking just around the corner. But you are here for your child and your spouse and you're bringing whatever comfort you can. You walk through it. You hold their hands. You pray. You go through it and when it's over, you just rock her and let her rest and maybe fall asleep on you. That's what you do. That’s your life now.

This is our normal.

Sometimes, we have company over. In the middle of dessert, out of nowhere, Allie shrieks as a seizure takes hold of her. Our poor guests are shocked, speechless. To them, this is not normal. It's terrifying.

Our normal is someone else's terror.

One of us, usually Susan, comforts Allie, and I comfort the company.

Saturday, March 09, 2013

The Shelf life of a Twinkie




Twinkies are an interesting compound. People have been having fun poking fun at them for years. Scientists have been overheard saying that wrapped up and left in the dark untouched, a twinkie can last 47 years. Maybe longer. 

Bitterness has the shelflife of a Twinkie.

This is a blog post I wrote at the beginning of our ordeal in Eureka, Ca. 

I just got Allie to sleep. Every night for the past week, Allie works herself into a frenzy. Picture a little baby that pinches his little finger or bumps his little head. The child panics and mom hugs the little one and in a few minutes the baby is comforted. Quiet. 
Now picture the same child unable to be consoled for hours; screaming and huffing and puffing for six or seven hours every night. It transforms the charming and beautiful Susan into a frazzled wreck. And me, well I'm emotionally drained and collapse physically exhausted into bed every night. I wake up every day wondering if it will get any better. 
Will this change or is this going to be my life? 
When this first happened to Allie, I had an attitude and posture of forgiveness and reconciliation toward the young man that hurt her. But now, it seems like I have to forgive him all over again several times a day. I ain't got it in me. 
I'm motivated to do a study on biblical forgiveness. I've already outlined it. I need to make an adjustment in my thinking. My theology isn't working for me these days. If I follow through with this study, I'll let you know how the Spirit is applying truth to my life. 
Please don't stop praying for us. 

Timmy got our of prison last fall. I don't think this could be a story if he just stayed in prison and we lived happily ever after. How would we actually have the chance to experience extending forgiveness.

I don't think I've experienced it yet. I don't know if there is anything to feel. Maybe you just think forgiveness. 

I know what it's like to get forgiveness. And I know what it's like to give little forgiveness. But can I do big forgiveness?

Holding on to unforgiveness makes you bitter. I know that. It stunts the flow of good, kingdom building energy. There's only one time that we can give forgiveness. That comes after we've been wronged. If we never get wronged, then we're never able to act toward others the way God acts toward us; extending full forgiveness for trespasses committed against Him.

Should I be an agent of God's goodness, or should I get bitter? Can I hold out longer than a Twinkie?

Wednesday, March 06, 2013

She Laughs

My wife is so beautiful when she laughs. That’s why I married her. She laughs so easily. After all these years, I can still make her laugh.

We’ve been together for a long time. And we still make each other laugh every day. Even on our most difficult days, she always finds a reason to laugh.

She is a sweet spirit.

Susan almost never cries. The past seven years of our marriage have been the most taxing and the times she cries have almost always been my fault. But when circumstances are tough, she doesn’t cry. She rolls up her sleeves and gets to work. And she still finds a reason to laugh.

She's tough and she's clever and she never, ever backs down. Susan keeps me alive and gives me a reason to work hard. I live to make her happy. When I can't make her happy, my world is totally off balance.

Susan and I are working our way through our new lives as the parents of a special needs child. Allie is our biological granddaughter, born perfectly normal and healthy. At 10 months old, her father shook her and squeezed her. She stopped breathing. She was resuscitated by emergency responders but remained in a coma for ten days. She emerged from the coma slowly and painfully with severe brain damage and disabilities.

susanSFO

Parenting a special needs child has tested our marriage beyond what we thought it could bear. At times, both of us wanted to walk away. At least I did. But this came as no surprise. We know each other. That is the most valuable commodity in a marriage. I know Susan and she knows me.

We went into this this with a strong marriage and our marriage continues to strengthen. Here’s the reason why: we can talk about anything. I can trust my wife with anything. There is no place that I can be more vulnerable, more real, or more spiritual than with Susan. She has my back.

Our defense together was strong as we began our twenty-first year of marriage as new parents. I couldn't imagine going into this with a weaker marriage or with a different woman. We've bonded through some tough times in the first twenty years we'd been together. We would need all the strength and familiarity we’ve built with one another.

The test our marriage went through did not reveal anything about the other that we didn't already know. It would only bring out of each of us at a steady and regular flow the junk that didn't usually come out very often. I give her no less than one hundred percent of myself. She doesn’t deserve a slacker. She likes to be challenged and she challenges me to be the best man I can be.

That’s why I try so hard to make her laugh.

Saturday, March 02, 2013

How I prayed

how-i-prayed

I’ve been writing a book about Allie, our special needs child.

She's a quadriplegic with cerebral palsy. Allie is a victim of shaken baby syndrome.

Allie is our biological granddaughter, born perfectly normal; perfectly healthy. At 10 months old, her father shook her and squeezed her. She stopped breathing. She was resuscitated by emergency responders but remained in a coma for ten days. She emerged from the coma slowly and painfully with severe brain damage and disabilities.

We decided to adopt her. And I’ve been writing about it here on this blog. Type “Allie” into this blog’s search tool, and all kinds of posts about Allie will come up. A good place to start is with this post.

When my wife and I were working our way through the beginning of our new life as the parents of a special needs child, our lives and faith were in crisis. One expects his life to be in crisis. But he’d rather his faith didn’t suffer. He wishes his faith were impervious to catastrophe.

I learned I wasn’t supposed to put my faith in faith. That’s where I came up short. I need to put my faith in God because He is faithful. That was tougher to get done, than I’d hoped. But God is the author of faith and He’s a good author. I’m just the author of a random blog.

I read a book about prayer recently. It challenged me and caused me to reflect back to how I prayed a few years ago when we were in the thick of trying to figure out our new life.

How I prayed.

This isn't saying I offered God prayers in large quantities. This is the kind of praying I did. I prayed so much. And I didn't pray enough.

When I prayed, I cried out. And I cried a lot.

There were times I wouldn't pray for a long time. It seemed that God went silent so I, too, went silent.

I was afraid, even, that if I died, Jesus might say, "I never knew you" because I just didn't talk to Him as much as I should have. Maybe that's why this all happened in the first place; I didn't pray enough.

I know that's out of character with what we know about Jesus. But these are the mental gymnastics I put myself through.

I wish I was more stout in my faith, but I'm not. I'm frail in my faith.

I prayed often for healing - I prayed for healing but I really didn't think healing was on its way. I really, really want to believe that God is willing to heal Allie from head to toe and I know He's capable. I just think He won't. I think He wants me to live out the rest of my life loving, and caring for her and giving her the very best life I'm capable of giving her as Christ lives and loves through me.

That's what I think He wants to do. I used to think that was bad. Now I think it's really very good because God wants to continually flow through me.

That's why I need to keep praying and pray big. I need to pray for the things that only God can deliver.

When Allie was first diagnosed with brain damage, the docs were convinced Allie was blind. The part of her optical nerve that could be scene with optical tools was gray. It was a dead nerve our doctor told us. We have it in Allie's records.

One year later, we went to the same doctor for an exam and as he conducted it in a very routine manner, he mentioned that her optical nerve was pink and healthy. He didn't give Allie's records or his own notes very thoroughly before he began the examination. I heard him say, "well that's a nice pink optic nerve."

I said, "You know, doc, last year, when you looked at her, you said that she was blind - that she had a gray optic nerve."

"Well, I was mistaken. Because it's pink."

That wasn't something I prayed for. God just did it. He showed us that He was showing up.

Susan prayed that Allie would be able to communicate. We're doing everything we can on our end to try and make that happen with speech therapists at school to copying her and encouraging her to leap out on her own with words.

Sometimes I yell at God and it doesn’t sound like prayer to the people who hear me in the next room. I don’t need to yell to be heard, but Psalm 57:2 says to cry out to God. So I cry out sometimes. I should be nicer about it because God is holy and deserves to be revered. But I get cranky when things don’t go my way.

I always wonder if God hears me. I wonder if He thinks I’m as much of a Christian as I think I am.

Book Review: Circle Maker

circle-maker

I was disappointed in the Circle Maker. It was too short.

I enjoyed Pastor Mark Batterson’s book tremendously. But I was done much too soon. That’s how reading a book should feel.

There are tons and stacks of books out there about prayer. But Batterson comes at the subject from a different angle. He doesn’t challenge you to pray a formula. He challenges you to pray big. Pray the kind of prayers that God wants to be a part of; the kind of prayers where God gets all the credit.

Batterson introduces the historical/mythical/apocryphal character Honi Ha-Magel. The historian Josephus mentions Honi in his writings and calls him a righteous man and a miracle worker. The most famous incident attributed to Honi happened during a sever drought in Israel. Honi drew a circle around himself and prayed to God for rain. He vowed that he would not come out of the circle until God sent rain. When rain did begin to fall, Honi wasn’t satisfied to come out of the circle until there was a downpour that could only be credited to the hand of God rather than a passing rain cloud. Honi wanted God to be his partner in this endeavor, not nature. He wanted the Keeper of creation to get the accolades .

What I took away from Batterson’s book is not that my faith is not big enough. My prayers are not big enough. For some reason that was comforting. Here’s why: I can’t make my faith any bigger. I’m so weary of my faith being challenged. Wrestling with faith is like wrestling with an 800 pound gorilla. No matter how hard I train and work out, I’ll never be able to win a wrestling match against a gorilla.

Make big prayers. Now that’s something I can do. I don’t need anybody to tell me how to do that. I don’t need a formula. I just need to do it. I need to make sentences with adjectives like huge and impossible and awesome and humongous and giant and unbelievable. Those are the kinds of words that describe God and that is the kind of language that illustrates His deeds. He wants to do big stuff. That’s His style.

Batterson encouraged me with his book.