Monday, August 29, 2011

Blinded by Faith

(Nick and CJ)

It has been a long month. One filled with more loss than most people experience in a lifetime. I don't even know where to begin.

After a 22 month battle with cancer, "Poppa Enzo" passed away on Tuesday, August, 16th. During the final days, there was plenty of time for the family and friends to come and say good-bye. CJ stood over his bed two days before he passed and said, "I love you poppa." I hated that he had to see up close and personal what cancer can do physically to a body and know he came close to experiencing that.

I won't go into detail about those final days because if I said they were beautiful and peaceful and there was no pain or suffering or questions I would be lying. That's not to say there were not some very precious moments. There were!  But if I described it with any honestly at all it would only serve to leave you heartbroken and confused. All in all, it all boils down to this.... regardless of our circumstances and what appears before us, we walk by faith and not by sight!
If I walked by sight I can tell you right now I would be devastated.

Unbelievably, the week that Enzo passed we lost three cancer kids. THREE! Ethan Jostad, Bo Story, and Abby Smith. All were very young children. I felt so heartbroken and yet so incredibly selfish because I was so thankful that CJ was healthy and playing outside as death hovered over this house and the house of so many precious children. Childhood cancer is beyond devastating. The facts alone would crush you. The reality of it is even worse. Many ask me how we stay so immersed in it? We walk by faith and not by sight.

As I sat and held Enzo's hand watching him take his final breaths, I could not help but think of Mackenzie whose little hand I held just 6 months before as she took her final breaths. I could not believe it was only 6 months prior. I felt like I had lived a lifetime in between. I honestly began to wonder if my kids were ready to handle this again.

We had Enzo's funeral the following day and I sat there looking at my little 8 year old Brett as he walked over to the coffin, stopped, and began to cry. I remember thinking, Lord, please work all things for good....even this. Even an 8 year old boy standing at his second grandfathers coffin in less than two years. Did I really bury my dad less than two years ago? And now I am burying my step father. I felt like I had lived a lifetime in between.

CJ was in the car with his grandma Paula (my mom) the other day just before Enzo passed and they were chatting. My mom told him that when she was his age she had never even known of anyone who died. He just looked at her trying to make sense of that reality and said, "I can't even imagine a life not knowing of cancer and death." He knows so much of it. He's 12.

Unfortunately, as much as I would have liked to have shielded him from further loss and say I thought this would be the last for a while, I knew he was about to know more of it. Our sweet friend Nick Patrick, age 15, who was battling cancer was not doing well at the time. I kept praying selfishly that the Lord would wait. We were not ready for another blow. But the Lord's time is set and Nick went to be with Him yesterday morning. I dreaded telling CJ and the rest of the kids. We had just spent a wonderful weekend with Nick and his amazing family a little over a month ago. Was that really only a month ago? I felt like I had lived a lifetime in between.

I hate to end this blog here. I know there should be some big lesson in it. But I don't have one other than to say, "we walk by faith and not by sight." So instead of any words of wisdom which I certainly don't have, I am going to leave you with what I honestly believe 15 year old Nick would tell you if he could say one last thing.......First, I think he would really be tempted to crack a joke and leave you laughing as his final farewell. But based on what I know of him and of what he believed and experienced, and based on where he is now, I think if Nick could say one thing it would be this.....

"For to me, to live is Christ and to die is gain." (Phil 1:21)

And I leave my fellow blinded sojourners with this....

"We walk by faith, not by sight"
"Now faith is being sure of what we hope for and certain of what we do not see."
(Hebrews 11:1)

Thank you to everyone who made donations to CBC in memory of Enzo Alibrandi in lieu of sending flowers. It will be a blessing to many families in great need and honors his memory greatly.

Wednesday, August 3, 2011

From Darkness into Marvelous Light

(Note: I posted two blogs back to back...please see both)

We spent the past week at the Lighthouse; a Christian retreat for families whose children have been diagnosed with some form of cancer. It was our second year attending this retreat. There were about a dozen cancer families there and even more volunteer families serving.

Some were only 2 months into the battle while others were 7 years in and still fighting.
Some were still on treatment. Others, like ourselves, were making the transition into life off treatment.

Each family is etched on my heart and brain. Ever since I got home I have not been able to stop thinking about them. It has been difficult to transition back into the flow of life. I wish I could give you a glimpse into this retreat. How can I explain that this world of childhood cancer is the most horrific experience and yet most rewarding privilege of my life? The deepest darkness accompanied by the most brilliant light. Does that make sense? Their stories are truly life changing. Dare I share the details? Would you listen?

I listened intently as one young mother shared about her battle with breast cancer. She not only lost both her breasts but when it spread to her cervix she lost so much more. Multiple surgeries. To the brink of death and back. As she shared her story, the fear, grief and honesty was so real you could taste it in your own tears and feel in your own heart. I already knew the rest of the story; I just never could have fathomed the beginning. Within months of her own battle, her young daughter was diagnosed with a serious brain tumor that turns out to be cancer. Why Lord?

Then there was the family from generations of boys who continued that tradition with the birth of two sons. They prayed and wished and hoped for a precious little girl to bless their masculine and rambunctious world. God delivers. But by two months old she is fighting a serious and aggressive form of cancer that is ravaging her little body and threatening her very femininity. The little pink dresses and ruffles become a source of pain instead of the joy they expected. Really Lord?

How about the family whose daughter was diagnosed with an incurable form of cancer. Literally incurable without God's miraculous intervention. A brain tumor attached to her eye. Always lurking. Always threatening. Treatment will never end. They will always have to stay one step ahead of it. That's burden enough. Yet during their daughter's treatment their son is diagnosed with Crohn's disease. Also incurable apart from God's hand. Always lurking. Always threatening. Treatment will never end. For how long Oh Lord?

Then there is the beautiful little girl who was born premature. As a result, she was severely brain damaged as an infant. Her little body and young life full of surgeries and challenges. Nothing is easy. Every breath and milestone fought for. Now liver cancer? Help me understand Lord?

Should I go on? How about the little boy diagnosed at age two. He is now 9. Three relapses. Still battling. He knows no other life than battling cancer. Neither do his three younger siblings born into this life that they think is normal. These are your people Lord. Servants in the ministry. Even them?

Or maybe I can tell you about the 17 year old girl whose body has been so consumed by the caner and the treatments that it is not her own. She has had to surrender it to the treatments to save her life. Her hair, her weight, the scars, her inability to walk well because of the nueropathy. She's 17! Female at 17 while healthy is hard enough- is it not Lord?

I know, I will tell you about the one I tried to ignore all week because it hit too close to home. She was one that attended the same retreat with us last year who had just finished two years of treatment and had her port removed. I remember the sense of relief and shaky celebration the family had last year! It was finally over after such a long battle. Sound familiar? Guess why they were back this year....not to celebrate another year cancer free. You celebrate that by NOT coming back. She relapsed shortly after last years retreat and is now back on treatment. Bald again. Fighting. Can you guess why I tried to avoid dissecting that one? Can you guess what my question was for the Lord on that one? Will that be us Lord? Will we be sitting here next year on treatment again. Bald? Fighting?

What do you think the doctors told her mom when her daughter had a fever and she feared relapse? "
You're just paranoid. It's just a fever. Life is normal now. You need to stop worrying so much" Wrong! It's back to their 'new normal' again.

There are more stories but I am afraid your heart would burst if I go on. Then you will end up like me...trying to process it all.

How about I just go straight to the elephant in the room all week? Or rather...not in the room? I have never felt someone's absence become a very presence like that before. For the families there that had returned from the previous year, we did not know how long we could avoid the topic. Would it upset the new families? Could we even handle it? She was a whisper of the heart at first. Then she was a tear shed from a memory. Then she was the lump in our throats. She is a silent fear we all carry. Vibrant and full of life last year but glaringly absent this year........Mackenzie.

Dare we look around the room and wonder if one of these children will be the absent-presence next year? I could not help but think....what if they are all gathered here next year without us? Would they mention CJ's name or would he become the silent pain they all carried?

From darkness to marvelous Light. Focus on the Light instead....

There was Creed. Creed, who coded twice this past year. Creed, who not only went beyond the brink of death and back but firmly into its clutches....twice! Creed, who should be brain damaged...but isn't. Creed, who jumped on stage and sang, "Glory to God Forever" at the top of his lungs while pumping his little fists in the air. When he sings the lyrics... "take my life, let it be, all for You and for Your glory. Take my life, let it be Yours" you better believe he knows exactly what he is saying and sacrificing. He's 6 folks. He exudes Light.

Focus on the Light....

We watched couples go from the brink of divorce on day one to the commitment to take that word out of their vocabulary by day five. We watched people lay bitterness and resentment down for their loved ones who just could not "be there" or weren't equipped to support them during their battle. We saw forgiveness flow for those who abandoned them at their neediest time. We witnessed parents turn the outcome of their child's battle over to the Lord and realize they are not the ones in control no matter how hard they try. We watched as husbands actively sought how to better support their wives through this trial. We listened as a couple shared about a restored marriage. We saw people become more interested in God's glory than their comfort. We witnessed people discover they were not alone, never alone.

From darkness into marvelous Light.

And that is just the cancer families. I have not even mentioned the ones that blow me away even more. Yes! Even more brilliant are the families spending the week serving our families. Talk about Light! Who do you think watched our kids while we had those sessions? Want to pay your own money to spend your own week's vacation serving a bunch of cancer families. Want to get your heart attached to someone you may have to lose? Want to have to stare suffering in the face? Want to cook for 150 families? How about clean up after them? Want to lay your life down for your friends? How about strangers?

You want to know Light. Meet my amazing friend Cheryl who suppressed her own broken heart over the loss of Kenzie and came to the Lighthouse knowing she would once again be opening herself up to the possibility of more pain. I could see the caution written all over her face. But when you have that deep of a servants heart it is impossible to stay away. She came, she served. She reflects Light like I have never seen before.

Just in case you missed it, I am going to end this post with the most amazing story. I still can't really believe it myself. Get ready because this one is really unconventional. This one challenges me and so help me will change me as well!

Each family is assigned a family partner. These are the people I told you about that pay to come spend their own personal time off work or school to serve our families. They cook, clean, wash, play with our kids, give piggy back rides, do silly talent shows, make our beds, wash our clothes, carry our luggage. Should I go on or do you get the point?

Sometimes it is a family assigned to each cancer family just like we had last year. However, this year we had a single woman along with some of her youth volunteers from her church small group that she leads. So she was not only serving our family but also serving and caring for them I expect as well. I met her last year at the retreat and have kept in touch sporadically throughout the year. This year she was back again and we were pleasantly surprised to see a familiar face assigned to our family. Her name is Angie, but it is definitely misspelled. It should be Angel.

You see, I found out on day three from another friend that just a couple months before the retreat Angie was diagnosed with Stage 4 breast cancer that has metastasized to her lymph nodes, spine and hip. Did you catch that? Stage 4 metastatic breast cancer. You think there was time to back out? You think everyone would completely understand? You bet! But not Angie! For her, there was just enough time to accept the diagnosis, get a port installed and start some hormone therapy to prepare for her upcoming chemo, radiation and surgery just before heading out to serve at a pediatric cancer retreat. And she is assigned to my family of 7!

Guess who carried my 50 pound niece around on her back all week in 90 degree weather? Guess who made my family's beds all week? Guess who did my family's laundry? Guess who carried my luggage? Guess who played with my kids so I could relax? Guess who left me encouraging notes in my room each night assuring me of Gods love and care for me? Guess whose laughter I heard the loudest each day over the kids? Guess who reflected more Light to me than I have ever seen?

"When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”
(John 8:12)

"For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us." (2Cor4-7)

"You, LORD, are my lamp; the LORD turns my darkness into light."
(2 Sam 22:29)

Angie in the front center with my Allie in green and more girls!

There's Jim serving breakfast.

That's Jim again. He doubles as a playmate for my boys when he is not cooking.

Allie and Creed

The Aftermath of the Storm

(Please note: I am posting two blog posts back to back. Please see both.)

CJ is officially port free, chemotherapy free and cancer free!! Praise God!

I have not officially blogged about it because I have not been able to adequately describe the feelings that have followed the port removal and I certainly did not want to come across as anything but grateful. We are extremely grateful!

It has almost been three years since CJ was diagnosed with cancer. Three years! That is a long time! He was 9 years old. Now he is 12. He was a boy. Now he is a young man. This has consumed a large part of our lives. A surgery, a song, and a see-ya-later just felt so......odd. And if it is over....why does it all still feel so....incomplete?

Early on I wrote a blog comparing our experience to the phases of a hurricane. I realized this week that the description still fits. In the beginning all we could do was brace ourselves for the storm and hope for the best. There was no evacuation route. We did not know how much damage or loss we were going to suffer. Fear and anxiety defined that phase.

Before long we were in the “eye of the storm”. It was an eerie calm we experienced about half way through. It felt like a false sense of security considering the backside of any storm is typically stronger than the front. It provided a time of much needed rest but it was also the time frame that our eyes began to open to all the suffering surrounding us besides our own. Uneasiness and deep sense of sadness defined that phase.

Now the storm is over. It’s time to step outside and access the damage. The “aftermath of the storm”. How do I describe these feelings? Does it depend on how much damage was incurred? Does it depend on how long the storm lasted? Does it depends on how much was sacrificed along the way? I am not quite sure yet what feelings define this phase. Relief? Yes! Regrets? Some. Responsibility?...or is that a hint of guilt? Gratitude? For sure! Determination?Definitely!

The storm has brewed up a cocktail of emotions. The damage could be much worse but it could be better. Does that balance matter. There is always worse. What is more important to come out intact? Our bodies? Our hearts? Our Faith? Can I have all three or is that asking too much?

CJ's body and our lives may be moving farther away from the battle but my heart is still deeply entrenched there. Do I even want it back?

CJ grows stronger...poppa Enzo wastes away. So much irony. Should we celebrate life or prepare for death? Do both? How? Tell me how.

How do I access the damage? So far this is all I have........

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."

(2 Cor 4:8)