Saturday, September 12, 2009

Life in the Kingdom

As I continue to try to figure out "normal" life in the midst of all of this, I have something on my heart that I would like to share. Typically I don't know how I feel, don't know what I'm doing, don't know where I'm going... but hopefully this will give a bit of a glimpse into where I am finding meaning and joy. Of course I am so pleased with where Jacob is... he has come so far! He is taking so many awesome steps, and will continue to do so. But every now and then I have these weird "flashback" experiences... when I start to feel like life is normal for me, I then remember where Jacob is and what happened to him, and the emotions turn on their head all over again as I ask "Did that really happen?"

Trusting God to sustain, to carry me through the day, to be a light in my darkness.

Anyway, here's the beginning of my discussion... (it's kind of an awkward transition).

The models that we tend to operate under are based on how to have success (with varying definitions, of course). I.e., manage your time well. Study efficiently. Have a good, secure job. Get stuff done. You should probably get a Master's degree. Have lots of deep discussions with people. Read your Bible every day and get something out of it. Become a better person. Be a leader.

I think that when we go through tragedy, these models are shattered. Because I know that for me, I just can't operate like that anymore.

Which brings me to the idea of the Kingdom of God. It is so easy to define the Kingdom based on these standards of success - that the Kingdom is where "God rules," where "what God wants done is done." These are helpful descriptions, but become distorted when we assume that we know what these things look like. We turn it into "God wants me to do what I am doing." I think that we assume that because we do something in the name of "God," he wants us to do it and supports it. (I can name at least a dozen instances through history and my own life where this got the Church in big trouble!) The definitions of the Kingdom start to distort and fall apart when we start to meld them with what we think our lives should look like.

I have never felt the Kingdom of God before like I did this summer. But did God want Jacob to get electrocuted? I don't think I could trust a God like that.

Did Got want his Son, the Christ, to die a bloody death under his own wrath, to enter into utter physical and spiritual destruction? I don't think so. But out of it came the Kingdom and the Presence of God on earth like NEVER BEFORE. (In an indwelling Spirit! No longer just in the Temple like the Israelites were used to).

I think I typical trait of many Christian circles is that over matters like this regarding "Kingdom" and "Presence," we too easily revert into an endless predestination (Calvinism) vs. free-will (Arminianism) debate. "God is in utter control!" "No, we can make choices!" "No, God determines your choices!" "No, that's slavery/puppetry..." and so it goes, on and on. The problem I see with both of these is, that in arguing, they push God back into this far-off, transcendant Being who either manipulates and controls the universe or turns his head and doesn't care what happens. I wish we could get past the God of Calvinism and the God of Arminianism, and get to the God who comes down to be with us becvause he loves us, to comfort us in our sorrow, to befriend us in our loneliness, to heal us in our brokenness. Not to say that God is powerless to stop these things; but we must also account for evil in the world, for that which acts counter to this Kingdom-way, and understand that our God is a God who visits us in the midst of this horror for the sake of restoration.

Maybe the Kingdom is where what God wants done is done. But maybe all he wants is to be with us and loveus. To hold us when we can't go on. To sit next to Jacob in the hospital bed, crying with Jacob, encouraging him to stand up.

And then I think of this idea of the Holy Spirit... the essence of the Kingdom, the presence of God made real among us. And that is the key to it: among us. The words I said in the previous paragraph: "To sit next to Jacob in the hospital bed, crying with Jacob, encouraging him to stand up..." that is exactly what we are all doing for Jacob right now! We are being the church, we are being the presence of God to him. I picture Jacob as being the pinnacle on a pyramid... my family is the stones in immediate contact with him... and the rest of the stones are all of those who have expressed their support and love either to Jacob directly, or someone who doesn't even know him but is supportive and loving to someone who is trying to help us in this time. And then I realize that the idea of the Kingdom means that this body that is behind Jacob is really just one of the stones in the great pyramid of the story of God. This structure of support is how I have seen the Holy Spirit, the Presence of God work.

I have seen the Spirit work, not through some vague divine intervention, but through the hands, the words, and beneficience, the presence, and the love of people. Which is, in fact, divine intervention! We worship a God who is here, right in our midst. If you tap into this idea of utter love for others, joy in showing hospitality, giving, self-sacrificing... then you are submitting to this Kingdom-way... you are honoring this God. His Spirit exists as this connecting network of those who are seeking this way.

Maybe the Kingdom is more like a lifestyle of interaction, a Way that often goes against how our world operates based on a faulty definition of success - based on greatness, prestige, numbers, vengeance, capitalism, self-sufficiency... Maybe success in the Kingdom is based on how we react to failure, to brokeness, the the "little ones" that we come across (See Matthew 16-18), to the outcasts, to the unfairness, to the wrongs done against us... do we forgive? Do we accept? Do we recognize our own brokeness and say, "you know, I am ther with you... and I still love you..." or do we remain in our pride and say "there is something wrong with you that you need to fix," and employ all methods of passive-agressiveness, vengeance, retribution nad judgment even in our methods of evangelism, saying "Act like me! Just be like me and then you'll be alright."

Maybe the Kingdom is actually a dialogue of how to react to sorrow, to distress, to failure - what we do when we realize that the success of this world, the priorities of mankind, are worthless. When we are completely broken, where do we go? I think that in our very brokeness, we find the entrance to the Kingdom. Our world changes when we are able to let our defenses down and see just how weak we are. Brokenness is the door we must walk through. But the doors we walk through are mere doggy-doors compared to the door of brokeness that Christ walked through, willingly, for us - he recognized the role that brokeness played in the Kingdom, and he went through the epitome of all brokeness, that he may walk alongside us in love as we walk through our smaller doors.

-Robbie (Jacob's brother)

Friday, September 11, 2009

Food, glorious food...

So my dad gave me a hard time for not posting anything yet today - and he is at the hospital everyday knowing what is going on. Honestly I have little down time right now as we have entered the "time-with-Jacob" phase. When I am with him - it is so cool to be with him. I got there this morning after taking Jensen to school and he was working with the physical therapist. His new room is nice because it has a big hallway right outside that is all windows. He got to walk to the window with his walker and then sit in a wheelchair for over an hour. He cannot put weight on his heel and his arms are still building their strength but he is making such strides. 

The biggest today is that he has been taken off the feeding bag through the gastric-intestinal tubes and is now putting on the calories through his mouth. If he can continue to take in food and protein drinks through his mouth in the next couple of days we can talk about the removal of the belly tubes! Another leap forward! With big blue excited eyes he told me that he had a half of In-N-Out Burger and a few fries last night; this morning he had oatmeal; and then today broccoli, chicken, and a bite of rice. He has also been able to have a Chai and of course Arizona Green Tea. Tonight Jim is bringing him Round Table. He only has bites and complained to them about not being hungry enough. Their worry is that he won't get enough calories because his mouth gets tired - but that does not seem to be the case - anything but - thus they are stopping the feeding through the stomach tubes (brown goop). 

Though the rehab is slow and hard and Jake wants to be back where he was - he is making leaps. The plastic surgeon took out the staples in his back today - about 30 staples and in another week and a half he will take out the stapes in his head. There is still swelling that needs to go down over his ear but that will come with time. We are waiting to hear still about surgery on his thumb - we are hoping that will happen next week. This all is leading to Jake being able to come home in a couple of weeks - giving us time to figure out modifications we need to make at home - what a joy. I told Jake that we would plan out tomorrow what he wants the living room to look like that will serve has his temporary bedroom. 

Friends Mike and Shirley, Debbie and I prayed with Jake for a while - all of is pouring our heart out in praise - thanking God for the miracles - open to God for more of his presence - desiring for peace to fill Jacob - patience, long-suffering, hope, etc etc. I am praying as I did when he was in the Burn Unit that the Lord Jesus would lay down with him in comfort. Last night Jacob slept from 10 to 7 - he was so thankful for a good nights sleep - that was our prayer last night when I left. I promised Jake I would call him tonight before bed - I am hanging with Jensen for a little while - another very good place to be. So thankful for my three sons - all so unique - all such an incredible blessing to us.  

As we move into the weekend - I pray that we who consider ourselves on Jacob's Journey find someone else to be a blessing to - a blessing that seeks nothing in return. 

Grace and peace, 

Tom (Dad) 

Thursday, September 10, 2009

The phone call

8 am - I got a phone call - dazed and confused - drinking decaf - I grabbed the phone. It was Jake's cell phone - confused I answered - "Good morning Daddy. I miss you." And I thought a hug from Jacob was powerful - a phone call was crazy. It feels like pieces are being put back together - slowly, day by day, no more baby steps but giant leaps - at least for us - for Jake he wants to be back where he was before. Again each day we remind him that he is a miracle - that he is making huge steps.

When I finally got to the hospital he was sitting in a chair working with the therapists on rehabbing - games, writing, reading, speaking, etc etc. A family friend who works at the hospital brought in some strawberries from the farmers market that is in the courtyard every Thursday - Jake was in heaven - he at four strawberries. Another dear friend brought him some amazing strawberry ice cream - three bites - awesome. Then they brought him in some lunch...bunch of bites of spaghetti and fruit juice - mmmm good. For desert the hospital provided some vanilla pudding. The consistency and taste is not quite right for his mouth - Jake was a bit frustrated.

The great big news for today is that Jake told me with a big smile when I got there today: "I'm moving!" He is now out of ICU and on the "floor" in a regular hospital room with his own bathroom and shower. In the ICU pediatric they have this bazaar "hide-a-toilet". Literally the sink is on a hinge and moves out of the way to reveal a toilet - yeah not the biggest toilet you ever saw - remember we are in Pediatric ICU and Jake is over 6 foot.

Debbie and I met today with a team of people to help us figure out Jacob's health care needs as we move into the next phase - bringing him home and what care we will have to give him. There are a bunch of challenges ahead with our unique situation (i.e. where we live, health coverage limitations, Jake turns 18 next year). We are also at a point to start the conversation with school and starting to get him going on senior year.

All in all we are so very blessed. I can confidently tell Jacob that we will move through all of this with amazing support behind us. Debbie and I are able to be with him each day because so many have blessed us with support through this time. We are also seeing windows of opportunity to bless others as they are on their own journey's.

Jude 24-25
To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.

Tom (Dad)

Wednesday, September 9, 2009

Oreo and familiarity

We continue to see Jake growing and getting stronger. Mornings are spent with the therapists: speech, occupational, physical, etc. He is more and more awake and more and more able to speak to us. He is now going to be able to eat some soft solid foods - they tested him eating: ice then pudding then Oreo cookie - all in small careful bites - smooth easy chewing - all went down with a swig of water. He also got to enjoy his favorite drink today Arizona Green Tea.

A bit of a feeding frenzy going on around hear - a feast - in small bites.

They will be lowering the amount of food through the feeding tube (brown goop) and moving toward some soft food.

There are moments that I stop - and consider what has happened and feel shocked - disbelief of where we have been and where we are now. Though we have a better idea of what is happening each day and seeing improvement there is still the unknown - maybe better yet the unfamiliar. Knowing what is going to happen or at least the idea of what might happen - while we think otherwise - does not necessarily give comfort. We are talking about going home - what we will need to do to make that work - what room - what kind of bed - ramps - handles - etc. We are going to need to learn to give him medications through the pic line, change his dressings - while we will be told and shown and the unknown will be known - it will all be so unfamiliar. Maybe that is why change seems to be so hard - familiarity is so comforting. Entering the Burn Unit was so unfamiliar - leaving there and coming here to the Pediatric ICU at Kaiser, unfamiliar.

Familiarity seems to give comfort but it can also be a false sense of comfort. We need to move forward and enter into the unfamiliar in order to find rest and healing - in order to move forward. We put up such a fight against unfamiliarity - we do not like discomfort. Jake is pretty comfortable here right now - lots of people waiting on him - helping him out. This is no place to stay though. This week he may move out of the familiarity of this room out of ICU into a regular room. He is no longer an "intensive care patient." Praise God. Though it will be unfamiliar it will move us forward.

Patients heal better in familiar surroundings - they encourage pictures - deeply desire to get us home. Not only because it frees up their bed but because evidence shows that patience heal faster at home - in what is familiar. But we cannot stay there - we need to move through that to grow to change to improve. Familiarity does not always mean safety or thriving. In the midst of familiarity we also need to push beyond and be uncomfortable. Jacob needs to push his vocal chords in the right way - work on using his hands and arms - stretching them - writing - he needs to push walking - not overdoing it but just beyond what is comfortable and challenge himself to reach a little farther.

For whatever it is worth those are my thoughts today from Jacob's bedside. As I watch my son in thankfulness - in the miraculous healing - in the hope of returning. Jake longs to return to the familiar - the normal - but in my heart he is beyond normal - he is a superhero.

Time to read to Jake a bit - we started a novel.

Peace and hope,

Tom (Dad)

Tuesday, September 8, 2009

Best present ever

Jacob is downstairs for a short surgical procedure removing the sub-clavicle line and putting in a pic-line in his arm and removing the staples on his heel. He still cannot put pressure on his heel when he stands and has a couple more weeks until the staples in his back and drainage tubes from the sight of muscle remove can come out. But we are progressing each day sooooooo much. It is incredible it builds momentum and hope.

Last night, leaving was hard as Jacob told me through mutual tears that he wants to be "normal." He does not want to miss out on his life. This morning when I came in he had just been helped to sit in a chair and the physical therapists were leaving. I received the best present ever as he said I want to give you a hug for your birthday - and he stood up and again in mutual tears just embraced, "happy birthday, daddy, I love you." That is all that I need today - I am good, I am full.

Yet there is more as we keep moving forward and the Rehab Doctor started the conversation about school and in the next couple of weeks setting up tutors and getting him going on finishing his senior year. We still have thumb surgery to come - maybe next week. They are not talking about removing the thumb anymore and replacing it with his toe - we are not talking doing a skin graft over the missing skin that is down to the bone (like someone took a bite out of a drumstick). I have been so reluctant to say that but it is to me such a miraculous blessing. As I stood by his bedside in the midst of his splints and bandages - I kept looking and praying and asking God to save his thumb. Now it is not a sure thing yet - but it IS what they are saying. A graft over the thumb - limited motion - but his own thumb.

Food will begin again this afternoon - maybe a bite of ice cream, oatmeal, pureed beef and mashed potatoes - Jake's eyes get big and he says "no" to the pureed meal. But we need to get his throat working on swallowing and his stomach use to receiving - to get off the brown goop bag and get back to real food - we need to get that feeding tube out of his stomach. Jacob is getting it and getting encouraged I think as he can do more and more - he wants to do more and more. He reminds me of what he needs to do - work at stretching his arm so he his skin does not heal with less motion - work with the breathing exercises - putting on his own pants and socks.

From all that has gone before - the slow plodding along - this is like lightning fast. Everyone said that Jacob is strong and he will bounce back - we are seeing it. Yes we still have a long way to go - but it is such a huge blessing and encouragement but us and I know to all of you that we ARE seeing it. Miracle on top of miracle, blessing on top of blessing.

The new article came out in the Mercury News today (link) - it was great to have Jessie Mangaliman come by and he was able to see Jacob eating and working on his therapy. He did a great job of sharing the journey - only one thing I want to clarify - Debbie is okay with Jacob still pursuing firefighting - we all are. Our respect, admiration, and love for those that choose this position is beyond explanation. We know a few firefighters personally - more and more each day. For us we no longer pass an emergency vehicle without a heart of praise and a tear in our heart, we no longer watch the news as though distant people are responding - they are friends and family. We fully support Jacob in whatever he wants to pursue when this is done.

Just wanted to clarify - otherwise thanks Jessie for capturing a bit of our journey.

We are waiting for Jake to come back to his room - my father (Papa) and me. In the midst of this moment - I am thankful, so very thankful for my parents as well - my dad is one of my best friends - he is a model for me of God's love - and for how to love my children - Papa is my hero.

Jake is back - surgery was a "piece of (birthday) cake."

Joy in the journey

Tom (Dad)
Getting prepped for shortest surgery yet. Removing sub-clavical line and putting in a pic line. Also removing all staples from foot. More later.

Monday, September 7, 2009

Friends and joy on Labor Day

Week #12

Jake is hanging out right now with 4 of his friends. I am sitting outside his room - not wanting to be too far but wanting to be close. Big smiles big bright eyes. I cannot even begin to tell you how incredible for me this moment is - you all already know - such a long haul to get to this point. He is tired and not fully here of course but Jake is back. He is coming back more and more each day. When he stands the dizziness is less and less - he cannot put weight on his heel yet - but there are so few tubes left. The physical therapist came in and already worked him - moving his limbs - allowing him to stand - giving him his homework. We are working his lungs, voice, throat - getting him ready to eat - working his up. He is longing for Arizona Green Tea. Yes they are already on their way. O what little things we will do - so thankful he can ask for what he desires. He has a huge slice with staple down his left-side back where they removed the muscle and two drain tubes coming out of his back. He still has the feeding tube in his stomach. He still has IV just below his left-side throat. And of course typical heart monitors. But other than that he has so few tubes from what he has had and - we can actually see them as temporary now.

I am almost afraid to celebrate too much - I feel guilty finding pleasure in his progress for I know that he wants to be where he was on June 27th. He wants to be in school, riding waves and fixies. I can see from here that he will get there again - that he has already gained strength. I have a better view from where I have been as to how ravaged his body has been. He can't see his head, back, shoulder. His view is limited in really understanding all the pain.

I guess as I write that is the lesson of my own pain as well. God sees it so much greater than we do. God is infinite and all-knowing. He can see our pain and he cares - empathizes - longs to restore. He sees the big picture and knows far more than me what is behind all this pain - where he is leading us through this pain - who we will bless - who will respond - who we will become. Growing spiritually is about growing in our view - seeing less from our standpoint and more and more from his. To see our own pain and others pain through the empathetic heart of God. That we may be blessed through blessing others.

I've cried out - deep, painful cries
All so lost - such utter despair
In anguish I've collapsed in sorrow
Exhaustion had overtaken me
Empty, torn apart, nothing left to give

Lord, even in my doubt you've answered me
You came near to me in my time of need
I heard your gentle whispers and your soft touch
You got my attention as you spoke boldly and urgently
You met me where I am, as I am, in my greatest need

I've seen you in the sanctuary, broken in worship
Praised you at the sea shore in the midst of creation
At the birth of my sons - I was left in awe of your love
Moment by moment, both in celebrations and hardships
Revealing glimpses of your glory, your love, your presence

I will never ever forget this moment - my greatest pain
It haunts me in my sleep and when I lie in sleepless waiting
Children playing with their parents - I long to hold them
Parents chasing after children - I long to help them
You have healed, you have restored, you have answered

Lord, your solutions are not what I would have done
My path would have avoided so much pain
My actions would have never gone down this path
And yet my view is not yours, mine knows great limits
Trust, hope, faith, love lead me through the pain to peace

I've known no greater tears and no greater laughter
What was lost - of greatest treasure - is found
What was hopeless has been restored - in greater beauty
Of what can I possible give back as worthy tribute
Thank you Lord, my God, I lay down my life before you

Joy in the journey...

Tom (Dad)

Sunday, September 6, 2009

Loving the community.

So I am picturing a lot of smiles tonight as all who have joined this journey praise God for the jumps Jacob has made. The trach out of Jacob's throat and is replaced by bandages - smallest bandages yet. The vacuum bandage is off of Jacob's foot. When I got here today we were able to wheel him outside - only the 2nd time in 2+ months. Jacob's bandage changes use to take almost two hours with two people - now one person can do it in 2o minutes. His skin is healing so beautifully. The doctor looked at his skin and commented on how great the texture is - the color will come back over the next couple of years but the texture remains pretty much the same.
He is resting right now. Tired. When I got here I got my huge smile - big blue eyes. The swelling is down on his head - amazing surgical procedure that the muscle becomes a thin flap that covers his brain so the skin graft can hold - making way for the plate in a few weeks. Trach is out - swallowing breathing - food is soon to come - not the brown goop. We have a lot to celebrate. All of us - nurses, doctors, family, friends, and this whole praying community - from daily prayers to just one prayer - we are all a part of this. I really, really mean that. We are experiencing the church as the Apostle Paul intended it - community of love.
Q: How in the world do you feel close to a church of 3000?

A: Share your heart.

We had the privilege of sharing Jacob's Journey in the church services for Twin Lakes Church in Aptos. It is the church we settled into about a year and half ago as Jacob led us to their Genesis service. It is a smaller alternative service. The pastor of Genesis, Charlie Broxton, and I have become great friends. His message was also his heart's passion - that we do not simply "go" to church but that we "be" the church. Charlie asked us to share a bit about our journey. Debbie and I were able to be there together for the Saturday night service and then I went back this morning.

Sharing last night was amazing - not that we did great - we bumbled through it - what was great was the community. After we shared we sat down and really did not know what to think. We had shared our hearts and did not cry a bit - I think we were so focused on the miracles that we have seen - we just felt so blessed - like we were the richest people in the world. But sitting down at least for me was just a feeling - emptiness...wondering now what?

As congregation sang the song - a group of people just came up behind us and put a warm hand of love on our shoulders - not mauling - not overbearing - warm and light. We had never met - we both just wept together in the warm community. One was a fireman - It was just a feeling of community - a deep connection.

Then this morning I went back - in each of the two services my experience was different yet still there was community. Dear friends were there; old friends, new friends, meeting some of you who have been praying for us. Amazing blessing. We now have 400 people who have figured out how to join this blog - a lot more read it and keep telling me they check it daily or more. The power and blessing of community is incredible. This is the church - you are being the church to us.

The church is truly not something to go to - the church is the living body of Christ - the expression of the character of God - reaching out to those around us - impacting our world with the love of God. God is love and as we show off his love to others transformation happens - spiritual birth takes place - God is still creator - he is still creating new life - spiritual life - through the love of Christ. Transcending that which so easily keeps us apart and yet is truly so irrelevant - moving to unity. Unity is not conformity, nor is it unanimity; it is the blending of individual instruments to create a symphony. The music is loud and it is beautiful.

As we move out of this week - there are opportunities to reflect the love of Christ to others - people we meet - people we know - family, friends - and people we do not know. We have an opportunity to BE Christ to those we come in contact with. We have an opportunity to change the world - to BE the church. Perhaps that is a big part of what this journey is all about.

Loving the community

Tom (Dad)


I had a difficult morning waking up. A lot of anxieties, fears, insecurities that tend to weigh down on me in the morning.

I called my mom to hear how things were going. My mom's friend Lisa answered the phone, and told me my mom was busy and would call me back.... busy helping Jacob as the doctors removed his trache tube! And they already took the vacuum seal off his heel, and it looks great. But the breathing tube is a big deal... he was already breathing through his mouth a little bit... it was time!

Earlier this morning Jacob was in tears about the idea that there is so much that he can't do. Now he has a tangible step toward doing those things again.

For the first time in this ordeal, I can come before God and praise him for his goodness. People have constantly told me that God is good in the midst... and before now it was an empty saying. I didn't know how to figure it out. But in the midst of all my own struggles, having this happen for Jacob is huge. So all I can do right now is come before God and praise him, thank him, honor him for answering the desires of our heart... not that God's goodness is only shown through physical answers to prayer... after all, what about those stories where things don't get better? Does God not answer then? But I think that in all things God is trying to show just how much he loves us... and that is where his goodness lies... not in the physical blessings, but in the joy of his love.

I am in tears as I write, feeling my cold heart being warmed by the Breath of Life. Please thank the Father with me.

When my hope is gone, how can I carry on?
If my faith is strong, will you be the truth I’m hanging on?
Will you be my eyes when I cannot see?
Will you be my voice when I cannot speak?
Will you be my hands where I cannot reach?
Father, take what’s left of me
If I fall away, will you come rescue me?
In my broken state, will you be a light to guide my way?
Will you take me back to that place again?
Where I know my savior as my friend
where you show me grace that has no end
where I come alive within your plan.

-Take What's Left of Me, The Glorious Unseen

I will bless the Lord at all times;
His praise shall continually be in my mouth.
My soul makes its boast in the Lord;
let the humble hear and be glad.
Oh, magnify the Lord with me,
and let us exalt his name together!

I sought the Lord, and he answered me
and delivered me from my fears.
Those who look to him are radiant,
and their faces shall never be ashamed.
This poor man cried, and the Lord heard him
and saved him out of all his troubles...

Oh, taste and see that the Lord is good!
Blessed is the man who takes refuge in him!

-Excerpts from Psalm 34

-Robbie (Jacob's brother)

p.s. new update on the state of his head after surgery: the swelling is down and a drainage tube that was being used to drain fluids from the wound was also removed because it is no longer needed.