Saturday, June 30, 2007
Here's a link to a report from Justine Kaminski, a CCJ team co-leader.
Here's a link to pictures taken by team members.
I received this email from my friend Luann today:
Bryon and Susan:
According to my co-worker Didi, some days are just plain old SUCKTACULAR.
All of us at The Good News remember you regularly in our prayers. We hope today is better than yesterday, and tomorrow is better than today and that the sucktackular days will be less and less. :)
Zephaniah 3:17 "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
Thursday, June 28, 2007
This afternoon, Ali's speech therapist came by to work with Ali and evaluate her ability to swallow formula and food. Deb, our speech therapist dipped Ali's pacifier in formula an gave her a taste, and then dipped the pacifier in some baby food. Ali was surprised by the new flavors. She also did some work on a bottle.
Deb's evaluation is that Ali is protecting her air ways; that is, Ali reflexively does not allow food to go down the wrong pipe. But this is all very new and Ali will need to practice this for awhile before it becomes a regular way of eating. What's cool is that Ali was able to do this on the first try.
And she went in there and blew their minds. Ali has settled down quite a bit over the past several days and we've been using her quiet moments to do the exercises we've learned both in San Francisco and since we've been here in Eureka. And Ali is responding well. And the physical therapists are impressed by the improvement in her range of motion and relaxed tone. These are so necessary for Ali's rehabilitation.
The reports that were sent up here from San Francisco did not offer the medical team up here much hope. But the team here says the person described in the reports and the little Ali person they get to work with are two very different people.
The folks here really have made Ali rehabilitation their mission in life.
"God, take away her pain. Give it to me. I can take it. She doesn't deserve it."
Moms, Dads, you know that prayer. If you've raised your children beyond their early years and into their teens, the desire to take away their pain has not diminished. You want comfort for your kids even if it that means torture for you. When your kids hurt, you hurt. When your kids hurt, you don't feel relief until your child feels relief. No matter what your kids do, you don't want pain for them. You want your kid to live in a universe void of cause and effect, justice, or consequences.
Today my child faced a judge and her child was taken from her permanently. My child's young life is devastated beyond anything I can even describe.
She told me she doesn't want to be a grown up anymore. And my heart hurts so hard. And I want I could trade places with her.
Tuesday, June 26, 2007
I just received this great email from a wonderful lady I work with. You guys don't know how much your notes and emails touch my life. Everyday I get a note like this and it makes me emotional. My wife looks at my face while I'm reading it and knows something's up.
"What are you reading?" the charming and beautiful Susan asks.
"I'll forward it to you," I answer. I don't dare read it or my face will turn into Niagara Falls.
Wow what a year. A year ago today God brought a sweet miracle baby girl into your family to forever change your hearts. What a journey He has had you on! We love you guys and pray that today will be a celebration of what God has done. I know the road ahead looks long and probably many days looks impossible, but I'm remembering a pregnancy that was hard and a sweet baby girl that captured your hearts when many times during that pregnancy we didn't know if she would make it to term and be healthy. Then I remember when the call came early one Sunday that this sweet baby girl might not make it. What a Sovereign God we have. He continues to touch her body and your lives and today is a celebration that He has much in store for little Miss Ali Rae. I'm praying Jody's prayer with you guys. This little girl is going to do many things with her life because God is writing a story for her that will mold and shape her and every life that she touches along the way & I know she's already been a part of my heart change.
Be strong Bryon and Susan; an army is praying on your behalf around the clock!!
Have a great day - sing happy birthday to Ali for me.
Love, Nancy (and Ray)
We sent a gift ups on Sat. but it won't make it there until next week. I guess ups is using pony express...
Ali's feeding machine is battery powered and can be stuffed in a little custom made back back. So while the charming and beautiful Susan walked around Target and shopped, Ali and I sat in the little Starbucks that's in the Target store (how cool is that?) and sipped coffee. Me, not Ali. I can't imagine Ali on caffeine.
(I'll update this post with pictures tomorrow. Right now, the camera is in the room where Ali's sleeping. I'm too oafish to slip in the room quietly without waking her.)
Sunday, June 24, 2007
It turns out that it centered northwest of here off the coast of Trinidad, CA.
Welcome to Northern California.
Saturday, June 23, 2007
Right now, Ali is up and the beautiful and charming Susan is trying to get her to sleep. Ali's about an hour overdue for night-night. Today has been the best day yet for Ali. She's been agitated very little today. Your prayers are definitely at work.
The best time to work with Ali or do therapy with her is when she is not agitated. When agitated, she has too much adrenaline pumping and she's not able to learn. Her brain needs the down time to rejuvenate and reprogram. So this is how you can pray.
Friday, June 22, 2007
My baby girl is twenty today. This picture to the left is her at about one year old, maybe less. Being a dad has been a challenge from day one. I don't think there's a dad in the world that doesn't work harder for the affection of his little girl above every other relationship.
Happy birthday Charity. I hope this next year is your best year yet. You're due.
Fatherhood is a life-picture that demonstrates truth about God. God loves us unconditionally the way we love our kids. No matter how our kids screw up, we can't un-love them or quench the instinct to want to protect and bless them. I need to remember how baffled I am that my kids won't learn from my experience or when they spurn my good-will toward them. Often I do the very same to my own Heavenly Father when I fix my heart on willing disobedience when He has loved me infinitely more than I love my own flesh and blood.
Wednesday, June 20, 2007
Will this change or is this going to be my life?
When this first happened to Ali, 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.
Monday, June 18, 2007
I enjoyed the message delivered by Pastor Glen Mustian. He's the new senior pastor. I met Don Parker, the former senior pastor, at a conference last fall. I was a little surprised that Don wasn't there this morning.
Mustian is working through the book of Mark. Whenever I go to church, I'm honestly looking for the Lord to speak to me through the message. Pastor Glen gave a great talk and I especially took note of three things in Mark 1:16-45:
1. Follow Me. There is never a time not to follow Jesus, but now more than ever, I need to follow Him. That's as basic as it gets. It's fundamental. No matter what you do, in order to do it well, you must know the fundamentals.
2. Jesus will make us become fishers of men. I've been busy trying to make myself a fisher of men. It's not my job. It's His.
3. Get before the Lord and let Him recharge me. That's what I got from Mustian's comments on verse 35: "He went out to a solitary place; and there He prayed." I'm here living at my sister's house for who knows how long and getting alone with the Lord is a challenge. But it's crucial. How else will I make the most wise decisions for my family and me? How will I keep my priorities straight if I don't find my way to a solitary place?
It's my only lifeline.
Saturday, June 16, 2007
A few things happen when you finally get to Wit's End:
- When your loving spouse offers a good suggestion or offers help, you reward her with a dirty look and rolled eyes.
- You play the blame game.
- Thinking about the future depresses you.
- Overwhelming desire to wring someone's neck
- followed by plenty of guilt to wallow in for awhile.
- Exasperated sighing.
- Finally, prayer (this should be moved to the front of the line) for the little one who never asked for this to happen to her.
Thursday, June 14, 2007
Susan has nested for two days and Ali is nestled snug as a bug in her crib. Ali sleeps much better there, it seems, than she did in bed with Susan. Everyone is getting more sleep around here. Fortunately, none of the bedrooms in my sister's house share adjoining walls so that even when Ali is squawking, no one else in the house is really disturbed.
I get home to Eureka, CA, about every five years or so. When ever I do, I chow down at the Hole in the Wall where the best sandwiches in the world are made. I don't know what makes them so good. Maybe it's the Humboldt Bay Sourdough bread or small town pride or Northern California organic ingredients or simply magic mushroom induced creativity. I'm not sure. But I'd eat there five times a day if the budget and/or the charming and beautiful Susan permitted it.
Read about the amazing experience Calvary Students had at Student Life Camp here.
Pastor Dan shares new details and vision as we begin the construction process of the building. Click here to read more.
Good job, putting this together, Lynz...
Yesterday I said we were going to try Ali in her crib for he first time. I really didn't expect her to take to it so well, but she did. In fact, she slept all night in her crib. I slept like a baby, and for the first time in many moons, the charming and beautiful Susan was able to sleep and snuggle with someone besides Ali. And you-know-who benefited :)
Wednesday, June 13, 2007
As Monday unfolded, it became evident that small details were overlooked. That set us back a little. A few last minute phone calls and a few more visits from product and hospital representatives were made. Then we were finally able to leave.
Now there's the six hour drive from San Francisco to Eureka. Little Miss Ali hasn't had to stay in one place since she woke up from her coma. She did not take to the car seat well. Ali punished our sin of putting her in that car seat with a major poop explosion. The biggest one of her life. The charming and beautiful Susan said that the car seat scared the poop out of her. But the front passenger seat of our little Pontiac Vibe folds forward into a sweet little changing table so it all worked out. But it did take two of us to change her and get her cleaned up.
The next big challenge for us, well the charming and beautiful Susan (I was only
driving), was feeding Ali through her G-tube without a machine. Susan had to plug a huge syringe into the port of Ali's g-tube and gravity feed her 7ml every five minutes until Ali got a full 75ml while driving up a curvy highway 101 through the Redwoods. The beautiful and charming Susan got to accessorize her ensemble that day with blotches of baby formula. It was quite a fashion statement.
Every loose end in San Francisco or Florida was magnified a thousand times when we got to Eureka. We had to maintain a Ali's strict medicine and feed schedule, set up new digs, and put out a few fires I left smoldering back at the office. Picture bringing home a new born and setting up a nursery all on the same day. Now add setting up the mommy's room, too. Got the picture yet? One more thing: add a special needs baby to the mix. That's not scary; that's insane.
So keep those prayers coming. We've been in Eureka since Monday evening and we're starting to see a routine coming into focus. It's all about the routine. Here are our goals for this week: 1. get Ali to sleep in her new crib, 2. meet with new her new pediatrician, 3. meet her new physical therapist, 4. finish unpacking, 5. get some down time for the charming and beautiful Susan.
Sunday, June 10, 2007
Ali was hostess to a visit from her Grandpa and Auntie from Florida. It's been a few weeks since Grandpa has been able to visit. He notices incredible improvement in Ali since the last time he was here in San Francisco. Auntie arrived with an armload of gifts for little Ali. She fell asleep comfortably in Auntie's arms while she rocked and hummed to little Ali.
Little Ali has brought together two families that would probably never have crossed paths. No one ever knows what lies just around the next turn. All the planning in the world can never adequately prepare anyone for the plot-twists in our life's story.
So how do we get through it? How do we set ourselves up to properly face the future?
"He is like a man building a house, who dug deep and laid the foundation on the rock. And when the flood rose, the stream beat vehemently against that house, and could not shake it, for it was founded on the rock."
Matthew 6:33, 34
"But seek first the kingdom of God and His righteousness..."
"...do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble."
Saturday, June 09, 2007
After living in South Florida for the better part of twenty years, I can identify with southern boy Mark Twain when he said, "The coldest winter I ever saw was the summer I spent in San Francisco." It's been sweater and jacket weather every single day. Even in the middle of the afternoon, the temperature rarely rises much higher than the sixty degree mark. A cold winter day in Florida is rarely as cold as an average San Francisco summer day.
Monday is still our big day; Ali will be discharged.
The incredibly efficient Nurse Kathleen has rescued us from being drowned
under a deluge of state and local government bureaucracy. The cogs of the inter-office machinery has threatened to slowed our departure. But Nurse Kathleen and Hospital Social Worker Stephanie have greased the wheels. They've trained, prepped, informed, and provided us with services and resources for the next phase of Ali's recovery that commences when we leave Monday afternoon.
Hospital Social Worker Stephanie spearheaded a meeting that included experts on Ali's recovery from head to toe. Literally. Neurologist, speech therapist, gastro-intestinal specialist, nutritionist, physical therapist, social services and general medicine were all represented. Head to toe. Hospital staff are treating us like heroes that have rescued Ali. They want us to know that we have their full support.
I apologize for the amount of time that passes between posts. Internet availability at the hospital has been dismal over the past several days. This post and pictures come to you from a little coffee shop a short walk away from the hospital where, with coffee, you get free cream, sugar, and wireless Internet access.
We've settled into a routine here. Aaron went home Wednesday and I moved into the hospital room with the charming and beautiful Susan. And Ali. We take turns holding and loving on her, I run five or six miles through Presidio Park every other day (there's a cool trail that winds down the hill toward a beach on the mouth of the San Francisco Bay, just west of the Golden Gate bridge), walk to Starbucks, do laundry at a coin operated laundromat, and eat food from the hospital cafeteria.
Wednesday, June 06, 2007
This is a huge answer to prayer. Thanks for praying with us.
It was rough seeing Timmy. He was brought into court in orange coveralls. He never looked up until it was all over. I watched him hold Charity's gaze through red, tear-filled eyes and mouth the words, "I'm so sorry." I felt electricity shoot through me when this took place. He's broken. Charity is drained. Susan felt and extreme sadness. I just feel sorry for what his life is going to be like. Really, really sad.
And I'm elated because Ali is going home Monday.
I'm amazed at how much grace I seemed to have when I first got the news about Ali being rushed to the hospital. I wanted good things for everybody. I honestly thought that I'd be bringing Ali home to Floria just a couple of days after arriving in San Francisco at the end of April. I even threw Ali's car seat in my car for the ride home from the airport. One helping of good things and healing for everybody. I just want everything to be okay. God will make this all okay in just a day or two. It will be a much needed wake-up call for Charity and Timmy. Ali will come home with us until Charity gets her act together. Ali will be in the loving home of grandma and grandpa in Florida.
The first two days in San Francisco were a wake-up call for me. The state took custody of Ali, Charity's parental rights were suspended, I read hospital and police reports, the doctors were extremely grim about Ali's future, and child protective services told me I couldn't have custody of Ali because "she might go from the frying pan into the fire."
Reality was no longer reality. Grace has left the building.
Am I allowed to feel this way? As a Christian? As a Pastor?
I used to be able to look at somebody else's tragedy and just say, "Trust Jesus. No trial will come upon you that is too big for you to handle." Shut my mouth.
I don't know how I'll feel today in court. God has been faithful to provide everything I need to daily live in grace and obedience (not that I've always been graceful or obedient). But I seem to only get enough for the day. When I think about what I'm going to need for the future as I process outcomes and relationships, I honestly don't feel Christian or Pastoral. If first impulses are any indication, vengeful and vindictive most describe the attitude I'll have. I'll need wisdom and grace every single day for the next few years. More than I've ever exercised up to this point.
"Hey, check it out: they ha--"
"Hey, check it out," Susan cut in. "Ali's kicking both her legs now."
Up until today, Ali had only been kicking one leg. But today, when the nurse cam in to weigh her, Ali flipped out because someone dared to disturb her rest and started kicking both her legs like she was riding a bicycle a hundred miles and hour while laying on her back on the scale. I witnessed this, but the beautiful and charming Susan did not. So this was a first for her.
"I have something really important to say," I said. "Why did you interrupt?"
"What?" asked Susan.
"There's Nilla Wafers in the kitchen."
To which Aaron said, "That's something Homer Simpson would say."
Sunday, June 03, 2007
I stared at this beautiful sight all morning. I know I've written that she has come so far, but I just can't say it enough. I remember the condition Ali was in a little over a month ago. It was bleak. I wanted to be faithful an hope-filled, but I was crushed. 10,000 pounds sat on my chest and there's no amount of hope or faith that could budge or bench press five tons. But thanks to the fervent prayers of faith-filled friends, that bar-bell began to levitate. It was like Samson was my weight lifting buddy.
This is how the doctor found me this morning when the charming and beautiful Susan was in the shower. Laying next to Ali. The doctor on the floor today was the same doctor that was on the floor the night the ambulance brought Ali in.
The night Ali wasn't breathing.
The night the world was flipped upside-down.
This doctor met me a month ago with the most sobering discussion I've ever had. Ali was in a coma, a machine was breathing for her, and Ali could not maintain her own body temperature.
This morning when the doctor came in, there was a smile on her face and we talked about Ali going home. We talked about the necessary preparations and arrangements and the action items for this coming week. What a difference a month can make. I wonder what next month holds in store for us and Ali.
Saturday, June 02, 2007
Kudos to you and your team, Jeff.
Susan was able to take a walk outside with Aaron while I lay with Ali in bed. We stared at each other until we both fell asleep and took a short nap. This was the charming and beautiful Susan's first venture out of the hospital since Tuesday.
When I walk around with Ali or hold her and rock her, I sing this pray over her:
Lord, prepare me to be a sanctuary
Pure and holy, tried and true
With thanksgiving, I'll be a living
Sanctuary for You
I am amazed at Ali's progress. When I hold her, she no longer feels like a limp sack of potatoes. She's moving her head even more. She takes a pacifier like no body's business. She kicks her feet and she definitely tries to stand.
STAND, I said.
I went camera click crazy.