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Friday, December 23, 2011

Ho'olawai "Healing Water"

Charlie, Sharon, and Brian at "Sunrise Worship Service". Kahana Beach, Maui. May 2011

Today, while I sat with Jeff's parents in the surgical waiting lounge, his dad began to speak of what they will do once they get Jeff out of here. He will miss Christmas at home, yes, but he will still be here. That's how we're looking at it. I'm still channeling what I have now coined "Jenny's mantra"; Optimism is my source of hope. I repeat it over and over. I have resolved that everything that comes out of my mouth in the presence of Jeff's parents will be optimistic and hopeful. I want to believe it has made a difference, however small.

So, we began to talk about when Jeff gets out of the hospital, and his dad mentions getting him to the healing waters of Hawai'i. They love Hawai'i. They lived there for a short time. His mom said; "Maybe we'll rent a condo and just let him heal there." His dad nodded. I know them. They will do whatever it takes. If it means selling their house, their cars, everything. They will do it. Who wouldn't? Jeff's dad begins to talk about how EVERYTHING in Hawai'i is healing to the soul. We had this conversation when we were there together in May for the big "Jeff's Maui Adventure Trip". I nodded and said; "Remember when we went to 'sunrise worship service' together on the beach? He smiled. "Yes," said his mom. "That was wonderful. EVERYTHING in Hawai'i is healing; the water, the air, the smells. That is what we will do. We will take him there where he can heal for now."

I squeezed her hand. "Yes. It's where he belongs." Optimism is my source of hope.

Tiny Steps Forward

Jeff strolling along The Strip in Vegas. January 2011

I have to make this quick. Jeff had his third surgery in ten days time. Today, they closed the incision using his own skin. This is VERY good news on two fronts. One; the swelling was down enough that they could close him, and two; they did it using his own skin instead of a pigskin bridge. Now, after a bit of recovery time, he can begin to actually eat. Of course eating for Jeff right now probably means clear broths. But I have to say that broth can taste like Filet Mignon when you haven't had a single thing to eat for over two weeks.

This is a tiny step forward. We will gladly accept tiny steps in that direction. He continues to show these doctors that his will to live is "Bigger Than The Odds Say". They don't know Jeff the warrior like we do.

Thursday, December 22, 2011

Setbacks and Clanging Bells

This is a tough one. I've very much struggled over the past two days. Of course, to say "struggled" is relative and those of you who know my story know that its been longer than two days. Right now, my "struggle" is nothing compared to what I'm watching Jeff and his parents go through, and even to hint at the idea of a struggle right now seems like a selfish indulgence. That being said, MY struggle IS one of faith and has been for as long as I can remember.

Faith, as described in the dictionary, isn't restricted to religion:

Definition of FAITH
A: allegiance to duty or a person; loyalty. Fidelity to one's promises. Sincerity of intentions.

B: Belief and trust in and loyalty to God, belief in the traditional doctrines of a religion. Firm belief in something for which there is no proof. Complete trust.

C: Something that is believed especially with strong conviction; especially: a system of religious beliefs (the Protestant faith).

As I have mentioned before, my long and arduous journey with faith begins and ends in the church. I'm not new to religion (I've always hated that word), but I've always felt more spiritual than religious. I knew scripture, I prayed fervently, I believed fiercely, and I raised my kids in a "Christian" home. But all that changed in 1998, worsened in 2003, and since then, because I attached what I saw as actions of betrayal by "godly people", I built a very, very thick wall of animosity toward God. To me, they're one and the same. If "godly people" suck, then God sucks too. That's that.

Believe me, I know it sounds infantile and immature. But there really isn't anything you can tell me about Christianity that I don't know. I could write a book. Ten books. Been there, done that. I could count on one hand the number of people who I TRULY believe behave in a way that, if God is watching, would make him proud. One hand. Please don't confuse the issue here. I have a lot of good people in my world. I'm just talking about the ones who profess a belief and live that belief. Most other people I know or am acquainted with who profess their belief, set off my red flag of distrust. They talk the talk. But they don't walk the walk. I guess I'm being judgemental. It is what it is. The second I hear sentences that begin with; "I'm a Christian," or "I'm praying for you," I begin to shut down. I can't hear anything after that.

Charlie reminds me that PEOPLE created the mortar in that thick wall for me. Not God. He's right. For me, those people suck. If one of them says they're praying for me, they might as well stick a knife in my gut for all that's worth to me. Still, even now, I realize that I'm not an atheist because if I was, then who do I have to be mad at? Even more importantly, if I don't direct my anger at God, then there's lots of humans that would be subject to some very nasty wrath at my hands. Charlie, sweet and wise as he is, has always given me the allowance of this anger, however misdirected he thinks it might be. Why? Because for him, God is bigger than that. He doesn't believe that God works the way that humans think God works. For me, there is no one I trust with my faith more than Charlie. For me, no one behaves more in a way God would want someone to behave than he does. Without a church, without a congregation, without banging a bible or spouting scripture, my husband walks the walk. He isn't the "clanging bell" (which to me reads as "hypocrites") spoken of in Corinthians. He is the love.

That's how I feel about the people I now surround myself with. My heart does the speaking and their hearts respond. I do not have time to waste, so much has already been wasted. I do not need religion, but I realize that I DO need faith. I found that faith in the people who are not those clanging bells. They simply do what to them comes very naturally. Their actions speak louder than their words. Sometimes there were no words, they were just there. Sometimes being there didn't mean they were there physically. I felt their presence. Their words were never empty. They did what they said. They have ministered to me in the hardest of times and not a one of them desired any reciprocation or accolade, nor had any of them sat in a church or belonged to any other fellowship than that of humanity. This is my congregation. These friends who loved me for me and accepted the love I had to give whether I was a churchgoer or not. "Perhaps," said Charlie, "this is God for you?" Perhaps. I do not know. But I have found peace in this and I need that peace so that I can pass it on for people who need it more than I do right now.

We have had a bit of a setback with regard to Jeff. They were going to take him back into surgery and close his open incision on Tuesday. Once they did that, he could begin to eat actual food again. Bland and soft, but actual food. He hasn't eaten anything for about two weeks now and he is, quite simply, a skeleton with a skin covering. He is weak, and frail and maybe weighs all of 90 pounds. Any nutrients he is receiving are being administered through a feeding tube. We sat in the surgical waiting room Tuesday night and looked forward to hearing the surgeon say that his incision was successfully closed. That did not happen.

Though the swelling in his colon has decreased substantially, it wasn't enough to pull his skin together without tearing. So they didn't risk it. His surgeon, I discovered that night, has a Gregory House beside manner and though I cannot go into detail for privacy reasons, I know that if this were my son and that guy was talking to me and Charlie, there would be some ass-kicking going on. Which is what brought on this whole topic of faith for me. I digress. The news was a devastating blow and very difficult for his parents to process. I began to realize that they only heard the negatives that came from this man's mouth AND some of what he said they were not processing. These poor people had been through so much for so long and listened to doctor after doctor. It was late, and I know they were exhausted, so I began to relay to them the positives that I heard him say. Optimism. It's all I could offer at the moment. But I know it mattered to them.

My niece Jenny wrote me a great note the other day. Her father is undergoing cancer treatment right now, and so we have been sharing. She said a few things that I thought were important for me to hear and somehow, she was able to get beyond my stubborn wall with this:

Aunty Pua, Thank you for sharing Jeff's story with me. As far as faith goes-I feel I have no other option. All I know of this dreadful disease is that science is only so good. Not all medicines cure all of the disease. Knowing this, I shutter to allow myself to think of the outcome. Then come the mind games playing tricks on me. I know that in this mortal life we are not guaranteed an eternity and I am simply too selfish and not ready to realize the no promises or guarantees offered on as I think of my father's life. My brain knows cancer is not an automatic death sentence but my heart has a lot of difficulty actually believing it.....In order to fill the void I have come to know as "what the experts say" I found myself seeking validation behind the faith I do have....Optimisim is my source of hope. If I don't believe then I have nothing except a hole in my heart. There is plenty of time for a hole in my heart later after mortality smacks me between the eyeballs right now, I need hope.

Optimism is my source of hope. I took that to heart. Jess and Marc reminded me that we are all judging Jeff's life by our standards. That's not for us to do. Just as I felt this doctor's cold, scientific realities don't speak to one very important thing; Jeff's faith. I looked into his mom's tired, worried face after the surgeon left the room and said to her; "Sharon, remember what Jeff told us he saw?" She nodded. "Well, that doctor doesn't know what Jeff knows. Not only that, we know Jeff. Don't we?" She smiled. "Let's hold on to that. Okay?" She nodded again.

Despite what that doctor said, it's two days later and Jeff is still here. Yesterday, my small way of sticking my tongue out at Dr. Negative's prognosis is that I bought and decorated a small Christmas tree and took it to Jeff. His mom put it on his bedside table-tray and Jeff smiled when he saw it. I called his mom this morning to check on him and she said that tree gave him so much joy. He loved looking at it. That, and he's looking good today, they're moving him out of CCU. So there, Dr. So-and-So. Take that.

Ikaika means "strong" in Hawaiian. I've been calling him that lately. He likes it. He pumps his fist when I say it. Whenever I leave him and say goodbye; I say "Tiny steps, Ikaika. Tiny steps." He never stops smiling.

Tuesday, December 20, 2011

God said; "Ok" - Part Two

Jeff working at the Hurley Pro Surf Competition. Summer 2011.

Charlie and I left the hospital and drove home in near silence. We had pretty much said everything there was to say. We didn't really have to speak, we knew what our hearts were saying. But my heart kinda spilled over and I just couldn't hold it in anymore. I wept. The kind of weeping where your body shakes and you just can't stop. Charlie reached over and squeezed my shoulder. So unfair. I couldn't stop thinking that no one should have to deal with this horror. Especially not someone so sweet, so kind, so soulful. Parents should never have to watch their children suffer so much and for so long. It just isn't right. I couldn't wrap my head around it. He spoke of seeing God. What did he mean? I know he told Bry that he was at peace with God, but what was this "I saw God" thing?

Tonight Jeff would rest. We hoped it would be a good rest, at least as much as humanly possible given the situation. But they think they got all the infection and his intestines and kidneys were functioning again. His urine was clear and he actually wrote "Poop!" He smiled. We all laughed. Yay! Poop! I honestly never thought poop could make so many people so happy. Bry went to see Jeff after he got off of work. Though he couldn't speak, these two seem to know what the other thinks. Jeff made Bry laugh with all of his "thumbs up" signals and Bry made Jeff smile with football scores. When Bry got home, he talked with us a bit. It's hard for him, but harder for his friend. He doesn't complain. He just keeps being present for Jeff.

Monday morning, I saw Charlie off to work and then went to the hospital. His parents met me in the hall of CCU. Said he had an "okay" night, but he's upbeat in spite of everything. They removed the trach tube so he could talk a bit. His voice was soft and scratchy but he was communicative. I mentioned to his mom that he had written on the note to us that he had "seen God". Had he mentioned it to them. His mother smiled. Yes. He said when he woke up from the surgery, God was there. God asked him; "Do you want a quick life, or a long life?" Jeff responded; "I want a long life." God said; "Ok." Then Jeff went back to sleep. He told them it was quite vivid and that he felt that God was going to let him beat this and stay because he wanted to write a book. A book about being young, and living through cancer. His mom and dad both said that they don't know what happened, but Jeff began to rally. Some kind of light surrounded him. He seemed different. They don't know, they only know he's still here and he shouldn't be. I hugged them and went to see Jeff.

When I went in his grandma was there and the nurses had just finished giving him a bath. He looked at me and nodded his head and smiled big. The nurse asked him if I was a friend. He softly said; This is Pua. She is my best friend's mom.  She's one of my other moms." I melted. These boys have always had a way of doing that to me.

I stepped up to his bedside and held his hand. All the typical questions you ask someone in his situation, I asked. He said his pain was 1000 times less than yesterday and he sure would like a taco. I laughed. I imagine he's qite hungry. He told me quietly that they would be closing his open incision tonight or tomorrow. Suddenly, quite without warning and to my surprise, he began to pull his gown up to show me his very large incision. I suppose when you have been through all he has been through, there is no such thing as modesty. This once shy boy was now a quite matter of fact cancer fighter. I had to smile at his tenaciousness.

I got up close to him and said I wanted to tell him a story. He nodded. I put a little pouch in his hand and squeezed his hand over it. "Jeff, you know how my nickname, email name, license plate, everything says 'Kekai'? (he nods). Well, it means 'the sea'. I've always been 'The Sea Girl' because my parents never could get me out of the water. I've always felt happy there. (He nods enthusiastically and gives me a thumbs up). When I was little, my mom gave me this. I want you to hold it for me now." He opened the little pouch and took out my mother's rosary. "The beads are blue because they look like the ocean. You and Bry have always been my ocean boys. So you borrow this for awhile. Until you are strong and out of here. Then you can give it back to me and we will go down to the ocean and play in it together. All of us. Just like we did in Maui. Okay?"

He kissed my hand, kissed the rosary, and said; "I promise Pua. I promise we will do that." I left him to rest and went back to talk with his parents for a little while. They needed some talking time, I could sense. His mom was as "usual" herself as she could be. She said he had written them so many notes when he couldn't talk and was more demonstrably affectionate than he had ever been. It was nice to see them smile. It had been so long. I told them I would be back and I let them get back to their son.

I have had a long and difficult spiritual journey and the truth is; I'm still not one of God's biggest cheerleaders. I've been so hurt and so damaged by people who call themselves "His" that it is hard for me to trust. I also struggle with a loving creator who would allow such pain, especially if he is all-powerful and can do anything. Here we are, this couple who answered "a call" to full-time ministry and packed up everything, lock, stock, and barrel and went 1300 miles away to seminary. Only to become so disillusioned and return to a church family who basically shunned us for being "disobedient". Still, I respect people to believe as they will and who am I to question the spiritual journey of someone who is SO deserving of a reason to believe?

My son wisely said that whatever brings Jeff peace, bring him peace. That's where I am. It doesn't make all right with the world for me. But then again, this isn't about me. It's about him. Right now, my peace is Jeff's faith and that is all that's important right now.

God said; "OK" - Part One

King's Canyon Camping Trip - April 2011

I haven't written much about our sweet Jeff. His family is pretty private and I don't want to risk overstepping boundaries. But somehow, I feel like a corner has been turned in this respect. Something has definitely changed. Don't get me wrong. We're not entirely out of the woods here. There is a long, long way to go. But there is something different...about Jeff, about his parents, about everything.

Jeff has always told Bry that he was at peace with God and that if God decided it was time for him to go, he would be okay with that. Bryson always told us that he may not like it, but whatever brings Jeff peace, brings him (Bryson) peace. He will always support his friend in whatever kind of support he needs. Over the past two years of this ordeal, that has usually meant "going and doing". Camping, surfing, road trips. Anything that Jeff has uttered that has been possible, Bry has tried to make it happen.

Two weeks ago, we saw a quick decline in Jeff's already compromised health. He was just beginning radiation treatments when his belly began to distend and swell. He was thirsty, but couldn't drink. He thought he was constipated, but couldn't go. He began to get weak, but refused to go to the hospital. Finally, when he could barely move, his dad literally carried him to the ER, where they drained over a litre of liquid from his abdomen. Still, no one knew why it was happening or where the fluid was coming from. They sent him home. Days passed, more fluid buildup, more drainage, still no answers. His body began to shut down. Back to the hospital where, after scans, and tests his parents were told he had an infection in his intestines along with a mass. They couldn't rush in to remove it because his white count was so low that he wouldn't survive the surgery. So, he went through an intensive platelet and antibiotic infusion for 24 hours. Still, the bad news was that they were going to have to remove a large part of his colon and if he made it through the surgery, the recovery, even for someone stronger and not already in poor health, would be long and difficult. During this time, weak, weary, and very tired, he told Bry that he wanted to "be done". He just wanted all of this over. None of us could blame him. He told his mom that he thought he was dying. He'd never said those words before.

His poor parents. My heart hurt. We had watched them, over the past two years, age with worry and fear. Doing everything in their power to help their son and also struggling to want to take over with decisions. But knowing that Jeff is a legal adult and wanted to make the decisions with regard to his healthcare. Helpless at times, and so overwhelmed. This crappy deal sucked for everyone. I honestly have no intelligent way to say it. It's unfair and it sucks.

On Saturday, we had a houseful of family for an early Christmas celebration. But Charlie and I told Bryson that everyone understands if he needs to be at the hospital during the surgery. He said Jeff would want him to be surrounded by family and Brian (Jeff's dad) promised to call him often with updates. It would be a long day, but true to his promise, Brian would call and Bryson would excuse himself to take the call. Trying to do our best as proper hosts, Charlie and I would stay on track with our guests, but always be watching Bryson. A few times Charlie would go to him, we could tell by his demeanor, slouched shoulders, pensiveness, he just needed hugs. At one point, a call came and Bryson returned smiling. Good news; a last minute specialist came in and said they did not need to remove any of Jeff's colon. The "mass" or obstruction they saw on the scan was merely some radiation burn scarring. No need for such drastic intervention. However, they did find some small tumors and were able to remove them and they left a drainage opening for any further fluid to drain. They would continue to fill him full of antibiotics and leave the opening for a day or two.

On Sunday, we went to the hospital. He was in the CCU, so his parents met us out in the hall. They were all smiles. They looked younger, rested, relieved. They hugged us and told us what we should know when we went in. Jeff is very weak, very drugged up, but very alert. He can't talk because he has a tube in, but he is breathing on his own. They let us go in to see him. When we walked into his room, his beautiful blue eyes opened wide. He looked so tiny in that bed. Tubes going in every which way. At least 9 infusions of all sorts. He lifted both hands toward Charlie and I. I took his hand and kissed it. He squeezed our hands. I told him we were all here for him and how we loved him. His eyes filled with tears. He motioned that he wanted to write a note. His dad passed a clipboard and pen. His little hand, all full of needles and tape and tubes shook as he slowly wrote:

"I've always loved you guys. I saw God. I love life. I wanted to tell you that if I am taken, I am ok. But I think I will stay."

It was everything I could do to hold it together. Charlie and I just held his hands again and he squeezed and squeezed. He put my hand up to his mouth as if to kiss it despite the tubes going in his mouth and nose. He reached up to Charlie and squeezed his shoulder as if to hug him. He placed his hand over his heart and then pointed to us. We told him how much we loved him and that he should rest and get strong so we could all go back to our beloved Hawai'i again. He nodded, then closed his eyes..pain meds kicking in.

We walked out with his dad who told us that Jeff had been writing lots of notes and making sure everyone knew how much he loved them. He also became a bit of a mother hen. He wrote: "Dad, don't leave your truck parked where it is. You'll get towed or ticketed." "Mom, go home and rest." "Did Pua get that job?" This sweet, sweet boy. So worried about everyone else instead of himself. None of this is lost on us. He is fighting for his life. He shouldn't be here. There is no reason he should have made it out of that surgery. But he did. And he would soon tell us why.

To be continued...

Monday, December 05, 2011

Where The Heart Is

Jeff and Bryson. Angel Game August 2011.