Saturday, March 6, 2010

HOME

The first time we brought Jacob home from a hospital he was in a car seat. We stopped at Mervyns to exchange an outfit that Debbie insisted could not wait. That was almost 18 years ago. The second time we brought Jake home - a few months ago - we stopped to pick Jake up some food from Togo's. I think I drove more careful than ever as Jake, thought not in a car seat, was fragile. This time we could not wait to get out of the hospital. We took Jake to his favorite sushi restaurant. Though we were a lot less anxiety - the plate in and secured. 

It truly feels like we have reached a summit on this journey where Jake can decrease his dependence on "mom and dad." From here we expect his therapy to increase so that he can get back to the point where he can drive himself to appointments, build upon his strength, and increase the functionality of his arm, thumb, and foot. He is of course still recovering from the operation. There is pain associated with the surgery and he is tired. I think in his mind he would be able to bounce right back but it is going to take some time to recover. I truly treasured just being with him today. 

People told us when our kids were born that time goes by too fast - treasure the moments. It is so true. Each stage of life holds incredible moments that we take for granted until we are faced with major setbacks and trauma that deviate us from the expected course. I had a brief but meaningful conversation with a father of a 3-yeard old that was a couple of doors down from Jake. It reminded me again just how much more valuable my sons are than anything else I might pursue or that might pursue me. Good reminders and I need to make sure that I take time with each of them, that I intentionally build into them, and that I set the example in how I love God and love others. 

Home is a good place to be. Your own bed is so much more comfortable. Though we totally enjoyed seeing some old friends at the hospital (nurses, doctors, etc) and meeting some new friends. There is such a blessing in being home. Although it is a bit farther for Jim and Sue to drive. They continue to be a blessing to us - greeting us when we arrived at the hospital for Jake's surgery - coming by each night - lightening the burdens by just being present with us - still faithfully bringing us cups of cold water. 

Happy Saturday. Welcome home. 

Tom (daddy) 

Oh. Thanks also to those angels that cleaned our home before we arrived. What a blessing that was to arrive home to. 

Friday, March 5, 2010

The Journey is at the summit.

Each person who came in to check on Jake remarked at how well he looked and that he should be going home today. That is until the doctor who was making the call finally came by around 2 and said that he would like to give him one more day, just to make sure. Moving fast but not that fast. So it became a long drawn out day made pleasant by Jim and Sue and Auntie Julie (of course). Robbie made it back to school and took Jensen down to Aptos for a birthday party. Somewhat back to normal. Jake was wide awake and moving about and feeling good. Just now as I left his room to make my way to my room at the JW House, he had a hard time falling asleep. I am praying that it will be a quiet night and that the well meaning staff will just stay out of his room so that sleep can be maintained through the night.

What a blessing it is for Jake to get up and move and for me to not freak out about an uncovered brain. He is well covered and though it is healing and Jake needs to be careful for the next few months (aka no contact sports, swimming, etc) he has made it to the summit of this journey. Wow can we really say that? This was the last major surgery - those to come will be for hair and body movement and will be considered minor surgeries. We still pray that there will be no infection and that healing will take place, but we just marvel at where the Lord has us now. We can move forward in big steps now.

More to come as we unfold what is next. (Rather as God unfolds what is next.)

Tom (daddy)

Thursday, March 4, 2010

Moving forward always more families to pray for...

Winding down. Rob and Jensen and I are at the JW House near the hospital. It is an awesome house that families can stay at while their kids are in the hospital or hear for cancer treatment. It was established by a teenager who was fighting cancer and recognized the need. He did not live to see it built but his legacy continues to bless. It is an amazing home-away-from-home. Jake had slow improvement feeling a little better. We only had to stay in ICU for 24 hours. Today at about 3 they moved us to a regular room which is much easier access for us.

Around us I am praying for two families. One with an infant that was right next to us - as I walked by once today the mom was hovering over her kissing her feet. A little later the were taking her to get an MRI. That is enough to know that they need prayer, they need encouragement. Another family I was able to talk to the mom and dad on separate occasions. They almost lost their three-year-old son because the doctor thought he had a virus but the mom pushed for a blood test. This young boy has diabetes. Their life is forever changed as they are on the fast track to find out what they need to do. Their lives are changed forever and are exhausted - lack of sleep - overwhelmed - taking in way too much information in too short of a time period.

Thanks for hanging with us.

Tom (daddy)

Wednesday, March 3, 2010

Success and the Naked Crazy Guy

The rain came down hard this morning as we drove to the hospital and I reflected on the verses that I read earlier in Luke 8. Jesus was asleep in a boat the midst of a storm. Jesus was asleep as his disciples, some of them rugged fishermen, freaked out as they thought death was near. These men had seen some miracles - had at least some idea that Jesus was a prophet - but some had already understood that he was the messiah - but fear had gripped them and there was nothing that they could see except the storm that was raging around them. So they woke him up - maybe they thought it was a Jonah type thing - maybe they would need to toss Jesus overboard. They definitely needed help, needed hope, needed Jesus. So Jesus woke from his sleep - why didn't the storm wake him? - he woke up and calmed the storm. I wonder what his tone of voice was when he asked this question: "where is your faith"? 

Jesus asked me that a few times as traffic was bad, as the storm raged, as fears rose. Where are you God? As the doctors warned us of what might go wrong in the surgery, fear increased. As they placed the IV into Jake's arm, Jesus, are you awake? Sitting in the waiting room, fear alternated with hope and confidence. Faith comes so often in sporadic streams rather than deluge and flood. 

"In fear and amazement they asked one another, "Who is this? He commands even the winds and the water, and they obey him." (Luke 8:25)

These verses flow right into the story of "The Naked Crazy Guy". He was demon possessed. Chains could not hold him and they called him Legion, for he was possessed by many.  Naked Guy came to find Jesus. Can you picture the disciples, still with their mouths open in wonder from the storm being calmed, stepping off on shore and still shaking as they see a "The Naked Crazy Guy" coming toward them. Then before they know it this demon-possessed dude is free from bondage and a herd of pigs runs down a steep bank and into the lake and instead of the disciples drowning it was the pigs!

Those who were tending to the pigs ran to town and soon a huge crowd came to see what was going on. What a contrast: the disciples vs the townspeople. What an amazing to see "The Naked Crazy Guy" seated at the feet of Jesus clothed and calm soaking up each moment, each word of Jesus. The fear of the disciples drove them closer to Jesus. The fear of the townspeople rejected him. They wanted him to leave. In verse 38, Luke says that "The Naked Crazy Guy" begged Jesus to allow him to follow. But Jesus sent him away to tell his story all over town. He told him to stay with the people that had rejected Jesus so that he might be a source of faith-love-hope-joy. 

In the midst of this morning - I felt my fear driving me away from Jesus. It took great effort to return to the feet of Jesus and place my hope fully in his grasp. As the doctors told us of what might go wrong, what they might have to do, I took control and shunned faith. Faith-hope-love-joy comes in streams and can be so sporadic. It returned as I remembered all that has gone before - the miracles that we have seen - the storms that have been calmed - the Fear of the Lord. 

We sit in silence as Jake sleeps - head bandaged - recovering from an very successful surgery. The kind that makes stoic surgeons smile with giddy delight. "The plate was a perfect fit." "The skin covered the plate nicely." "It couldn't have gone better." 

So thankful for the prayer. So thankful for the hand of God. We know all too well that it does not always go as plan. We know all too well that God is still in these moments - thankfully - this moment went far better than our fear would suspect. So thankful for this community that surrounds and supports us. 

Peace and love, 

Tom (daddy)  

Tuesday, March 2, 2010

Here we go...

Tomorrow morning at 9:30 Jake goes in for surgery to place the plate in over his brain. One concern that we just found out yesterday is that there will be enough movement in the skin to cover the plate. It is curved...designed to fit as a puzzle piece perfectly in place. But the skin has been healing and has been a while so it might not have enough elasticity. If that happens the doctor will instead put in silicone that will over time expand the skin. Then Jake will have to go back in later to put in the prosthesis. Of course our prayer is that tomorrow would go smoothly, no infections and plate in place. Would you be willing to join us in prayer? We expect it to be about a 4 hour surgery.

I read this today in the book:
Closely related to the quality of my faith is the intensity of my hope. The Word of Jesus carries the implicit theme that the world is out do us good. When you stop and think about it, that's an extraordinary idea. In most of our lives we have the impression that the world has done us considerable harm and comparatively little good. Yet if the Abba of Jesus loves us, if He pursues us as a a tremendous Lover who is dying (in His Son) to be with us, then we are committed to the notion that His world, the work of His hands, is out to do us good. And that means taking the risk of letting others do good to us. It means going into the wedding feast and celebrating with firm conviction that we are not going to be chumped, cheated, or disastrously surprised.  Souvenirs of Solitude by Brennan Manning, pg. 15
Faith-hope-peace-joy are interwoven in and through the character of Christ. As we come in to this day - can we, no matter the outcome, no matter what comes, can faith-hope-peace-joy invade the moments. Can we strive to be so fully present with God that we trust completely in the outcome and allow His control to reign. It is a fight to remain in the presence of God but it come with practice.

In faith-hope-peace-joy

Tom (daddy)

Monday, March 1, 2010

2 days until surgery...

Today's "Plastic Doctor" appointment was frustrating. What we thought was going to be a quick "remember us" appointment turned into this stressful sinking appointment that left me angry. The well meaning - extremely kind doctor, let us know that there was a different option to a plate to cover Jake's brain. Here we are on this 8 month journey and two days before this surgery that is for us a summit, we are given a major "change decision." So at 9 am tomorrow the doctor was going to call us and find out our decision. I won't even go into the decision because as the "Plastic and Brain Doctors" conferenced today after our appointment and we are back to our original plan. Could they not have talked a couple of weeks ago or a few minutes before our appointment?

Compared to the other 8 surgeries this one seems mild, but we are talking surgery for the brain. This is a major surgery and has potential complications and set-backs. We also need to pray that the scalp (including the skin grafted muscle flap that has been covering his brain) will be able to be stretched over the plate. This plate has been custom designed with high precision to fit perfectly in place, but if it cannot be stretched there will need to be several weeks of stretching the skin. This also would have been nice to know a few weeks or months ago.

So the prayer for Jake's surgery is for the best case scenario - plate in place covering that valuable brain. We are praying for wisdom and skill for the doctors and eyes that see beyond what they would normally see. And of course what has been our biggest prayer and deepest desire is that we would know and trust the presence of God in these moments.

Oh, and by the way, here is a subtle answer to prayer. Jake's thumb does not need anymore Xeroform (the petroleum gauze used to dress healing skin grafts). The last spot that we were watching and putting a little piece on is healed and scabbed. Jake is still wearing his splint to protect it but we are not dressing it as a wound anymore!


Our time at Vintage Faith Church yesterday was amazing. For one thing - it was just fun to be with them. Each of the three services was different in their atmosphere yet such a blessing. It was so encouraging for me to watch Jake talk more and me talk less with each service. Josh Fox was introducing the church to a worship project that we has been working on for 8 years. One of the songs came from Josh engaging in Jake's story and asked us to be there and share a bit. Anyway it was just fun to be there and celebrate while also reaching out for we each have our journeys each have our struggles.

One thing that I really appreciate about Josh is a shared heart with us of deeply desiring for people to experience healing and reflect the presence of God to those around them. In the midst of this time there were a variety of ways to worship God: singing, listening, praying, giving, writing, painting... I got to briefly meet Deanne (I hope I got that name right!). She was up front painting through all three services. In this expression of worship she transformed a dark shattered pieces into mended shining light. There subtly before my eyes was a beautiful picture of our lives as we come to Christ and seek his forgiveness, transformation, grace. It is a painting of scars, restoration, hope. Beauty of brokenness.

Far to often we think that we need to fix what is brokenness in our lives and then come to God. Get your act together before dining with the King. So hard to fathom that the opposite is true. I remember a girl in college asking me to pray for someone because her life was not lined up with God at the moment. One who knew about being shattered, Paul said, "while we were still sinners, Christ died for us." (Rom 5:8) Coming to God authentically and honestly is far more beautiful than having outward religiosity.

Jeremiah 29:11, "For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." This often quoted verse was not written at a time of devotion to God but in the midst of God's people rejecting him - running away from God. Jeremiah was calling them back - calling them to repent. This is not a verse of a fortune teller but a call to repentance a call to return to the presence of God.

God calls to us in the midst of shattered moments of our lives and reminds us that we are not alone, we are not forgotten, we are not useless, He is present.

One of the blessings for me yesterday at Vintage was conversations with people following our journey. Gentle reminders that we are not alone. Also being able to talk and pray with others as they go through their own stuff - drawn into community with each other - mutually encourage each other.

Thanks for praying along with us for Jake's surgery. It is good to move forward.


Tom (daddy)