Saturday, November 14, 2009

Even in the midst of suffering...this is not about me.

It is really good to see Jake feeling noticeably better. His back is getting stronger and his attitude - frustration is lessening. We had a typical Saturday morning "big breakfast" and then after his shower Jake slept for a couple of hours. He slept threw what I had deemed school time (yes on Saturday cause we have days to make up?). But I think the sleep was very important. He woke up and we spent a few hours on math with is his least favorite subject. It was always my favorite so it is working out well. I get to refresh and try to remember stuff and he gets to have me explain it. It is so cool to see his confidence build. Maybe this was a blessing God added in that we could do it together - one on one time with math. We started on English when some friends arrived - he had a blast screaming into the microphone as Kiko and Chris were on guitar and drums. Jake had a blast.

It is so important to count the blessings in the midst of this storm - remembering that God is faithful regardless of the degree of my own faith. The strength or weakness of our spirit does not weaken or strengthen the faithfulness of God. And yet we act that way don't we? If I had prayed more.... If I had prayed with stronger faith... If I... As a matter of fact Paul says in Romans 3 the my lack of righteousness actually magnifies the righteousness of God. I am not the main character; God is. He moves and acts and loves us but he is the center.

Read Psalms 116 and highlight the verbs of God's activities: heard, turned, is gracious, is compassionate, protects, saved, been good, delivered.

Far to often we operate out of arrogance, pride, narcissism. Even in our sacrifice and serving we contain at least 1% of selfishness. Many a powerful leader in our world history has been defeated not by an external enemy but the enemy that is contained in his own mirror. We become our own downfall because we think more highly of our selves than we ought...(Romans 12:3). I have seen this in both business and the church. And yes I believe in my own heart as a leader in church, business, and my family.

I wrote this in my journal yesterday after reading Romans 2:
*Arrogance can follow chosenness
*Pride can grow from position
*Narcisism elevates oneself to equality with God
-> the heart of the Christian should lead to humility, kind action, restoring the broken...

In the midst of suffering it is powerful to remember that it is not about me and not about right now it is all about God and it is all about his timing. And yet along with this he chose me, loves me and listens to me. He does not change, is fully righteous, and always good. In the midst of both triumph and despair he is faithful.

Lord, help me to reflect faith and trust to my family - that they might see you - because far to often all of this becomes about me. Right now it is so much about Jacob - but even so it is all about you. Your miracles have shown us your heart, your comfort has carried us through, your kindness helps us to face another day, another tomorrow. It is far easier to write about your faithfulness than to live it out - especially in front of my family. Lord, may my lack of righteousness and faith reflect even more of your righteousness and faithfulness. And may whatever faith I do have simply reflect more of you - more of your glory.

Peace and love,

Tom (JK Daddy)


Wanted to check in before I left on a floor retreat to Point Mugu... sounds like an exotic place, right?

Talking to Jacob on the phone a few times a week, as I sit and reflect on that, is such a huge step forward to me. It requires not just his physical strength, but his mental capacity and awareness, and the fact that his personality is returning at each step. As great as this is, and as much as I want to be content with where he is at, I am not. Every morning I have been praying for three specific situations that God has put on my heart (my brother's included), and at the end of my prayer I focus on this phrase that I pieced together:

"Lord, take the pain away. But break us in whatever necessary ways for your Kingdom."

I see this as close akin to Jesus' prayer in the garden of Gethsemene; how weird, how mind-boggling it is that Jesus, God incarnate, more in tune with God than anyone in history, still did not want to go to the cross? He was scared, was anxious (to put it mildly). He began to sweat drops of blood and cried out to God to "take this cup from me!" God, don't let this happen to me! Take the pain away! I don't want this to happen! But then in a new phrase, he says "But thy will be done."

These two phrases don't negate each other. They come out of two parts of us, both of which God wants to see. The part of us that is human, limited, small, broken, that cannot understand God and admits it. That says, "God I don't understand! God I want all this to stop! I want it to be as if this never happened!" And then there is the part of us that still wants to trust God. That wants to hold on to the hope that we are loved, and that what is happening is not happening in vain, but that good may come of it. Both of these sides of us are sides that God wants; he wants us to trust, and he wants us to be real. We are not serving him fully if we are not operating in both of these realms. Becasue if we are not being real, how can we ever offer to him what is really going on for the sake of transformation? And if we are not trusting him, we become selfish and bitter and rash.

In conversation with a friend who is struggling through the sudden death of a close family memeber, we both agreed that we would love it if God somehow walked into our doorway and said "I am real." These hard things in our lives, at least for me, produce greater endurance and faith and trust, but only as a product of intense doubt. So me and this friend agreed that in those moments, when we do not beleive that God is real, the only thing we can do to still hold on to trusting is to offer this very doubt, this very unbeleif to the God who does care and love.

Jacob's thumb infection at first hit me hard. But then I realized that this is the first piece of bad news that we have received in quite a while regarding Jake's medical condition. Maybe these small steps backward are to be expected. Jacob of course longs to make huge strides; to be back in school next semester, to hang out with his friends more, etc... but I have confidence that God will use every second of Jake's recovery to do something for His Kingdom - that God will not let this accident have happened in vain. And at the same time, I wish I could go back to June 28th and simply have told him to not go.

-Robbie (Jake's brother)

Friday, November 13, 2009

Back a little better

Jake seemed to have a good day. He was greatly encouraged by his session with the physical therapist. She showed him some new exercises for his back and they really seemed to help him. His body has really compensated for the missing and damaged parts of his muscles, arm, heel and etc. He is working on strengthening and stretching and each day I see some improvement. We are all looking forward to a non-eventful weekend.

I found out last night that the Balloon Boy was a fake. I have not been following the news and had no idea that the parents had staged the whole thing in hopes of getting publicity for some reality show they were hoping to sell. I feel pretty betrayed - that I actually cried and prayed for them. The reality is that I need to pray for them all the more. When you take a step back and look you realize that there is far more of what we need to pray for them. None of us are beyond making that kind of decision, that kind of mistake.

More tomorrow.

Grace and Peace

Tom (JK Daddy)

Thursday, November 12, 2009

Mom's perspective

Some of what Debbie wrote here is hopefully clarifying of what I wrote - some duplication. But I wanted to keep it intact as she wrote it. So here you go....

Thurs Nov 12, 2009 8am

JK lies in his bed asleep still, thank you Lord - yesterday's dr appt was disappointing to say the least as JK was put back on Vancomycin, "the king of all antibiotics". There is an infection under his thumb bone. Then antibiotic is in a "baby bottle" type apparatus and I attach it to his pic line in his arm so that it can drip into his system over a period of 2 1/2 hours. He's already been through this routine as he had it for the 1st 8 weeks after being home from the hospital. It may seem at 1st glance like "no big deal, just put up with the drug for another month, twice a day and it should free his body of infection." But for JK, it represents a step backwards as I think he saw himself as done with bottles attached to his he was working on being free of antibiotics (Dr's orders for a month so they could move that much closer to head surgery date. We were hoping for early December that they would operate - placing the "prosthesis" piece over his dura and brain to replace the dead skull bone that was removed, re-seal his head with the muscle and skin currently in place and THEN would begin the lengthy process of JK getting a "normal" head back - even hair eventually.

I don't know how you'd feel, but he's tired of looking and feeling like a "freak" and now the process will only take longer. My only words, besides fervent prayers for God to comfort him and give him peace and perseverance, are that "he won't be like this forever" - only problem is that it's little comfort to someone who knows they are missing their senior year of high school, missing not so much the academics (unfortunately from a parent's standpoint) but JK is missing all the memories being made.

Life goes on - his friends, surf, parties, school, church, biking - speeding by faster than a bullet - Jake use to be one of the fastest. He would get up before the sun, whistling, showering, stomping up and down the stairs, playing his music, cooking himself sausage and eggs and then head out for school or go surfing or go to meet friends...different day, similar pattern.

How does one grieve a life they had that they loved and still continue living in a new and limited fashion? Only God knows we all limit ourselves somehow and only God can "restore us" in His ways and His time. The verses Jesus said to some are "you do not have because you do not ask" have been rattling around in my brain and heart from this I have barely started by Ed Underwood, When God Breaks Your Heart. Tom bought it and read it in the first two weeks of this journey. By the way, does God really get the blame for broken hearts? I guess I will see when I get into the book what Ed has to say. My heart has been shattered in different ways and at different times in my life - some days the pieces seem to be gluing themselves back together. Like when I focus on the miracle that JK is alive and loving and funny and wanting to get better. Other days the shards of my heart would like to remain in bed forever.

Anyways - back to - "you do not have because you do not ask..."

Why am I afraid to ask God for specific things/occurrences to happen? Fear tends to rule my life instead of Him, for one thing. I feel it's improper to ask God for anything as He is God and I am nothing yet He is God and ?I am not nothing - I am His child who He loves and gave His only Son so that I might live a restored full life regardless of my earthly circumstances. I think I am afraid to ask God for anything because what if He doesn't give me what I want? Does that mean He's not real? Does it mean He hates me?

Jake is waking up now. I've decided to ask God for things anyway, for JK's sake - it is scripture so why not? I ask you Father to give him a sense of hope, your Holy Spirit's peace, comfort, strength, perseverance - the ability to take life one minute at a time and refuse bitterness.

"For I am convinced that
neither death nor life,
neither angels nor demons,
neither the present nor the future,
nor any powers,
neither height nor depth,
nor anything else in all creation,
will be able to separate us
from the love of God
that is in Christ Jesus our Lord."
Romans 8:39-39

Wednesday, November 11, 2009

Fragile Faith

Another exhausting day.

Each time we go to a doctors appointment it takes at least 40 minutes each way. So a one hour appointment takes about 3 hours. We were going to spend a day catching up on a lot of school work which Jake continues to do on computer. By the time we got home tonight we were done. We got called last night to go in for a special appointment with a pediatric doctor of infectious disease. Jake's culture on his thumb disclosed an infection. So Jake is now back on what he calls his bubble. It is a bottle with a balloon in it that administers the anti-biotic over a 2 hour period. Though this is a tremendous blessing that they have discovered the infection, it feels like it is a step backward. Jake was feeling pretty positive about moving toward normal life - being with his friends, working at Freeline, etc. Most likely his head surgery will be pushed back while he is on this medicine.

Why is it that we try when someone is sad and crying to stop the tears and help them to see the positive? Tears can be exhausting and yet therapeutic - to release our emotions and let it all out is good for us. But when Jake is sad I find myself trying to convince him it will all be okay. A lot of it is genuine - helping him to see the positive. But it is also good for him express himself. Hope is not just that we are able to understand and see that things will work out. Hope is much deeper. It is a confident resolve that through the fire there will still be a blessing. There are seeds that actually must go through fire to germinate. New life does come. That is hope.

Faith is so fragile. I think that I see hope and I see how things make sense and so my faith is strengthened because I believe that God is working things out. But when things do not make sense and hope is fractured, faith falters and begins to crumble. Hope fans the flame of faith - it strengthens it and reminds us of the bigger picture. Faith then need be based on more than hope - there must be truth at the foundation. God does continue to show up and yet each day there are tests to faith - tests that attack my faith.

Though we step back a bit and I admit today my faith is questioned, God continues to provide, guide and simply show himself to us. My faith is questioned more when I see my son suffer and I wonder why. My faith is fragile more because I feel helpless and can't do anything to fix all of this. And if you are right there with me in this thought process, you realize that it is not faith if I am trying to do it. Faith is about releasing, trusting, letting go and letting God do it. Faith is about trusting in the truth that He is still alive and able to move and act in these moments regardless. That is faith, that is hope and really that is love. Standing firm in my faith is the most loving thing I can do for my son. When he cries - I pray that I will not try to fix it - I pray that I will cry with him and guide him right into the arms of Jesus - who loves him far more than I do - he is the one who died for Jacob - not me.

Slow steps forward...

Tom (JK Daddy)

Tuesday, November 10, 2009

day of suffering

Pretty worn out tonight.

This is a picture of Jacob and Edgar at the Gala - two survivors - two hero's.

We had an appointment today to take a look at Jake's thumb. The skin graft is doing really well. He still has two pins running through his thumb through the front. The doctor said that it will remain until it is healed - they will keep checking it weekly. He put it back in the soft cast. He let us know about the results of the culture that they took from the soft inside of his bone. Basically his thumb will fuse together at the joint.

On the way home the doctor called us and let us know that there is an infection in the thumb. This means that he needs to be back on the antibiotic that we give him through the pic line. He has been off of this for 3 weeks. The difficulty is that the neurosurgeon wanted him off of the antibiotic for 4 weeks before we went ahead with the skull cap. This is very very good that we found this out now. But it is also emotionally hard as it feels like it is a step backwards. Yet even as I write this I know that it is still a step forward - just a smaller step than we want.

It is also just emotionally so very much - especially to watch Jacob's face - his countenance drop as he just wants something to be less - now it is more - more medicine - more procedures - more doctors - more suffering. It is so much to handle. It is so hard to watch the pain on your son's face - to want it to be over - to so deeply desire for him to move forward.

I realized this Sunday that I have resisted the term "suffering" through all of this. In church as Rene' was talking I felt terrible uncomfortable being associated with suffering. Not out of denial more just not wanting to be viewed as someone in suffering - so I guess it would be pride or shame. There is fear that I might be viewed as less spiritual or capable because of my suffering. Like so many have observed - there are so many suffering far worse than me.

Watching Jacob, there is no doubt that there is suffering. Looking back on the journey - yes there is and has been suffering. Suffering holds within it's grasp great amounts of fear.

I received two messages today that culminated my day as it drew me into suffering of others. One was from someone I have not met yet but gave me an account of the suffering upon suffering that she and her family is going through. The other was from someone encouraging us with her prayers. Fear and suffering seek to exclude us from that which is safe - from the place of love. Perfect love casting out all fears helps us to grave hold of the savior.

Romans 8:15-17 For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, "Abba, Father." The Spirit himself testifies with our spirit that we are God's children. Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.

As we continue to plod along I pray that we would be worthy of a glimpse into the purpose of God. God is still very much real and necessary in this journey. And there is opportunity to be a bridge to the suffering that others are going through.

There are things that all of us can do right where we are.

Love and peace

Tom (JK's Daddy)

Monday, November 9, 2009

Fellowship of Suffering

Last night I was falling asleep at about 9:30 - of course did not actually go to bed until 11:30... It was a very full weekend. I think we are still taking it all in both the Gala and sharing in church on Sunday morning. Also having Robbie home was an incredible boost for our family - I know he is now 20 and moving into his own adulthood but having him gone leaves a dent in our side. I am sure that a ton of it has to do with all that has gone on - the trauma and suffering that we have all gone through. If he were here we would probably get to see him more but he would continue to move forward with his life. I think we see him more now for when he is home he is "home." Thanksgiving is only in a couple of weeks away(sorry if that shocks some of you!).

The Gala continues to dwell on our hearts. It opens up more stories for Jacob to hear from us - grabbing and kicking a nurse or Dennis throwing himself on top of Jacob as he thrashed about. There were so many nurses that touched our lives. One of them we created a special bond with was Minnie. Her husband is a firefighter at the Santa Cruz Central station. She has a young son and another on the way. We found out on Saturday night that her husband also trained with Greg Hansen who saved Jacob. Minnie also has been into Freeline where Jacob works. So there was this bond that came and she tried to manuver her shift to care for Jacob. Our lives intertwine in so many ways.

Minnie was the one who presented Jacob with the plaque - honored him for the encouragement and hope that he continues to bring. It was really an honor to this community that continues to come around us. The Fellowship of Suffering that we share. Jacob went up on stage and shared just a few words - not sure what to say - he basically said that he wished he could have gotten to know the nurses and doctors while he was at Valley Medical.

Sunday morning I shared in the first service for about 5 minutes or so in the midst of the sermon that was on Hope when life seems Hopeless. Here is a link to it - . During the second service I went in and shared in the Genesis service and my family arrived (all but Jensen). We then went over to the main service. As I went to go up on stage Robbie was going to go up with me - well Jacob came up too - then came Debbie and even my sister Kirky. Jacob answered a few questions, Robbie answered a few, I answered a few and Debbie shared a bit. It was good - I have no idea what we said - but right now I am just so thankful that Jacob chose on his own to come up with me. I am so thankful that he is starting to find a voice for his journey. He wants to see what God is going to do with this. In the midst of tears of frustration when we are at home - his tender heart is molded and shaped and is being prepared for his own testimony - his own story.

Over and over again through the last few days I have been reading Romans 7 and 8. I keep coming back to these verses...

"The Spirit himself testifies with our spirit
that we are God's children.
Now if we are children,
then we are heirs - heirs of God
and coheirs with Christ,
if indeed we share in his sufferings
in order that we may also share in his glory.
I consider that our present sufferings
are not worth comparing with the glory
that will be revealed in us."
Romans 8:16-17

God is testifying with our spirit about being his child! God is actively seeking to remind us - convince us - encourage us that he loves us. It is not that we only need to remind ourselves; God is at work - his Spirit is at work. I am his beloved child - he loves me with the same love that he bestowed on his own son - perfect love. Love that is patient, kind and gentle (1 Cor 13). John reminds us that God is love (1 John 4) and Paul reminds us what love really looks like - it looks a lot - change that completely like God (1 Cor 13). And with this love he chose me and made me his heir. We recieve all that God is and all that God has to offer - not just in heaven. Jesus said that the Kingdom of God is at Hand. He also said that through the Spirit of God he would be present with us now. We are heirs of God's glory now. So this suffering that we are finding now in the midst of life is not even close to what God has to offer.

This does not take away from our present troubles and sufferings - it does not diminsh them and there are no pat answers for this suffering and the question of "why". Jake is finding that as we are finding that "why" is hard to answer. So instead of focusing on the "why" we try to focus on the "who". The "who" is testifying with our spirit because we sure do not feel like his child sometimes. We may even feel like the forgotten child - the orphan left behind - the outcast - the worthless scrap that is not worthy to come to the dinner table. So God pursues us - reminding us - calling to us - finding ways to tell us in the midst of suffering and in the midst of truimph that he loves us and longs to be with us.

Even from a few brief conversations that I had on Sunday and a few messages I have received I know that this Fellowship of Suffering is quite real, quite raw and quite rampant. Suffering touches so many and I am overwhelmed with what to do. God is moving us, directing us and giving us opportunities to encourage one another, touch one another as we are given chances to crawl into the lap our Father - God and be his child.

Please continue to pray for Jake to be encouraged and that his back would continue to heal. What a treasure it is to walk with him through this time - yet we all get so weary. Pray for stamina.

Peace and Grace

Tom (JK Daddy)

Sunday, November 8, 2009

Mom writes: Sat Nov 7 Sat AM

Debbie wrote this out and asked me to put it on the blog...
JK likes in his own bed as I sit nearby on a mattress we put on the floor in his room so that I can sleep close to him - if we wakes in the night as often happens, I can help him get to the bathroom or rub his hurting lower back or comfort him if he's nightmarish or pop him pills to help him to sleep again...

Yes, this has all been very hard on Tom and I as a married couple BUT we wouldn't have it any other way right now as JK is alive and with us - hurting, grieving, but also able to smile, love, be thoughtful, work on schooling so he can graduate this year. He has lost so much as a result of his accident yet it is true that much has been gained in terms of love and depth of character for all of us.

There is stuff I am able to let go of now...I can let Jensen grow his beautiful blond hair into his eyes without complaining (too much) and dragging him to get a trim. The day will come when he realizes on his own that it is helpful to see where he is walking and choose to get it cut - life is too short to fight about hair lengths.

Robbie is home for the weekend - Jake has already mentioned a few times how he wants him to stay as he is so encouraging to him - the "brother bond" was nothing compared to what they have now - amazing. And for all my impatience and resentment and frustration with Tom over many things, he still brings me coffee in bed every morning which I treasure and he has taken over the kitchen (he was already the main food maker) big time - reorganized everything. He is downstairs making waffles right now - had to run to the store to get more milk (Robbie is home milk disappears like crazy - we should buy a cow!) Tom already came up this morning and rubbed Jake's back for 20 minutes as JK told us about one of his weirdest dreams yet.

One of the biggest ways I have seen Jacob changing is in his thoughtfulness - right now he is putting music onto his Ipod to play for me.

Tonight is the Burn Gala. The nurse manager, Jill, told about it months ago and we committed way back then to going. We spent an eternity with Jake in the ICU Burn Unit at Valley Med and I thought we would live there forever - then it seemed we were yanked from our family. It will be so good to be with them - Jake has never met them. He may not be 100% but we are going. Several of our family and friends will be there tonight with us - they have been with us through it all - as so many of you have. I hope to "be still and treasure this night in my heart" instead of worrying about anything or anyone. One of the best parts of tonight is that Captain Greg Hansen will be there. Greg is the true hero who risked his own life to rescue JK from the live power lines as he struggled and screamed and went limp. Greg had to pull JK out on his own not knowing if he'd be electrocuted himself...


That is where Debbie ended it. I wanted her to write more but that is it for now and she asked me to post it. So I pretty much wrote word for word. Debbie is sacrificing so much to be right there for Jake and care for him - less wound care now and more just being present - watching over him.