Sunday, May 24, 2009

Hope Springs Up



Early in CJ's treatment a sweet woman heard about our story and sent CJ a beautiful canvas she painted called "Hope Springs Up". It is a picture of a bluebird staring up at a tall, lone sunflower that has seemingly bloomed randomly amidst the high mountain passes and low valleys bluebird is traveling. The title of the painting describes perfectly the feelings I experience when looking at it. I can relate to the little bluebird navigating the mountains and valleys that lay before him and needing some hope to spring up as a reminder of God's hand guiding the way. I can relate to the little blue bird who purposefully focused his gaze on that hope instead of the mountains and valleys that surround him.

That painting hangs on my wall and serves as a reminder of the hope God has allowed to spring up for us during these past eight months of CJ's treatments. Through His word, through many of you, through the blog, and through His promises God has provided many doses of hope that have refreshed us in the valleys. Recently however, I found myself looking at this painting and praying, "Lord, like bluebird, I really could use some hope to spring up. Anything will do! Even just a sprout or sapling shooting up would be a welcome sight."

I was in desperate need of a fresh dose of hope. I had read some articles related to CJ's treatments that weighed heavy on my heart and mind. I was grieving for a woman that I have never even met who is dying of cancer. I was walking my daughter through a difficult time and as a mom I was suffering tenfold for every tear she shed. I was having difficulty discerning my heart and thoughts. In the midst of it all, I was struggling to communicate my feelings to Chris and therefore was not receiving the comfort I was in need of and that God has provided for me through him. Let's just say, I was a mess!

Like a drug addict, I begged God for a fix. Each morning I poured my aching heart out to Him, I felt desperate. I begged him for a shot of hope. I pleaded with him through prayer, through my journal, through tears, and even through gritted teeth. As the week wore on I began to think it wasn't coming and the temptation to go to other sources for a "fix" was great. (This would be my temptation to let my heart and mind wander from the truth and promises of God and throw a pity party.)

When hope finally came later in the week, it came in the most surprising form. Or should I say form(s). Hope was delivered straight to my heart through a blond, a brunette, and a redhead. Sounds like the beginning of a joke, right? "How can a blond, brunette and redhead bring hope to a downcast spirit?" Don't worry all you blonds, this is not your typical blond joke! The blond in this story is not the but of the joke here. Rather, she is the very reason the hope was delivered to my parched soul.

The seeds of this hope were planted back in January when she, the blond, who from here on out will be known as Kristi, heard about CJ through his grandma Paula. Kristi's spirit was immediately and powerfully affected. Upon hearing about CJ, Kristi went home and penned a song for him. She titled it "Angels Without Wings" because she felt that was what CJ was to her. Mind you, she still did not even know his name yet, only his story. Still, the song poured out of her. She sent the words to him with a beautiful journal.

At this time we were only three months into CJ diagnosis and treatment and still amazed at how God was moving so many hearts and spirits of His people to intercede for CJ through prayer. Some of the most powerful and faithful intercessors had never even met him before. Kristi was one of them. We kept in touch through email, through the blog, and through grandma.

Five months passed and during this time it became Kristi's passion and dream to see this song recorded for CJ. Enter the brunette, from here on out known as Sam. Sam is Kristi's piano teacher. He wrote the music/melody to go with the song and began to compose it with her. (sorry if I am mutilating the proper musician terminology) Kristi also began looking for someone to sing it. She went through a few different voices but was unable to achieve the sound and level of professionalism she was looking for. Enter the redhead, from here on out known as Amber Leigh.

Amber Leigh is an accomplished and professional singer who Kristi had heard about before. Sam contacted Amber by email and shared the story with her and asked if she would consider singing the song. Amber agreed. As a professional, she has a very busy schedule and setting up a time with the recording studio available, her available, as well as Sam the composer was tricky.

In God's perfect providence, the timing of this recording would not happen until the end of a very difficult week for me, as mentioned above. We were invited to the recording studio on Thursday for CJ to hear the song and finally meet all these people who have given their time, talents and treasures to bless a little boy they never met. It was just the fix I needed. Who would have thought God would use three complete strangers to open my eyes to His constant love and care for me and for CJ. As I sat there watching them work on the song, discuss different aspects of it, and consider each others perspectives openly and freely, it gave me a fresh dose of hope. How did I walk in there so downcast and heavy laden and walk out feeling so free of the burdens I was carrying? I don't know. Only God knows. Maybe it was when I looked at CJ and realized that his suffering is what God is using to do all of this in the hearts of people. Maybe it was when I realized the next day I would be sitting next to CJ as he had to have chemo, but for that moment it was the farthest thing from his mind. Maybe it was when I heard Amber Leigh say she had lessons that afternoon and she had a performance that night, or when Sam said he had a class at 1pm he needed to get to when they finished, or when I realized Kristi's 3 year old twins were at home with dad while she was here serving my son. It affected me to realize these people have busy lives, commitments, and schedules and yet here they all were giving their time with no expectations. It wasn't because of something I could see but something that was unseen, yet there in that room nonetheless. And my heart received it.

Yes, hope crept in my heart that day. And I have guarded it carefully ever since. I thanked God for that glimmer of hope during a difficult week. No, the difficulties did not end. CJ still had chemo the next day, the woman I mentioned is still dying, the articles I read are still fresh in my mind, I am still having trouble communicating........so what has changed? My heart and my hope! I am no longer focusing only on those things. They are with me, yes. But they are momentary and light when compared to the surpassing greatness of knowing Christ Jesus, my Lord and being privileged to watch Him work in and through the hearts of men....or should I say, a blond, a brunette and a redhead.

CJ with Sam, Amber and Kristi.

I may be... "hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed....." "....But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me."
(2Cor 4:8)(Micah 7:7)


"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
(Romans 15:13)
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Check out Amber Leigh's website. www.amberleigh.com

We're all going to get together and go watch one of her shows and you locals are all invited. It will be a blast and a great way for us to support her for what she has done for CJ. She plays at Boston's on the Beach from 2-5pm, Saturday May 30th, Saturday June 6, and Saturday June 20th. I will post the details once we know what show we are going to. I will also keep you posted as to the progress of the song! Kristi has big dreams for it and I just happen to believe God does too.
_____________________________________________________________

CJ did have chemo Friday and it went surprisingly well. He was a little nervous on Thursday but came to me late that night. He had been laying with his daddy and he was heading to his own room and said, "Mom, I have been nervous about my port being accessed tomorrow but I have been praying and reminding myself I can do all things through Christ, and it is helping me." Needless to say that gave me hope for the next day! And that hope did not disappoint. He did awesome! We worked on scripture memory the whole way there and by the time we got there he had 3 new verses, five total by the time we got home. He surprised himself what he can do when he sets his mind to it. One of the verses he memorized is Joshua 1:9..."Have I not commanded you? Do not be terrified, do not be discouraged. For the Lord your God will be with you wherever you go." You better believe that comes in handy when you are about to have a needle inserted into your chest.

He squeezed my hand hard when they accessed him but was focused and cooperative. I told him to go over his memory verses. He was really excited when the nurse told him, "We won't even tape it down, we will just do the push of meds and de-access you." He was all smiles after that. Big secret.....CJ's not afraid of the needle so much, what he hates is the tape on his chest when it is accessed. I know, crazy right! All the kids there hate the tape. I keep saying we are going to invent something to replace the tape and save all the kids in the future the hassle of the tape. The kids actually have panic attacks over the tape more times than the needle.

His counts were good and the doctors decided to try to go back up to a 100% dose again. So we are increasing his meds and seeing how he does. Keep praying for his little body to be strong.

Chris and I will be spending part of Tuesday afternoon on a phone conference lead by a doctor with the Leukemia and Lymphoma Society on the topic of "Childhood Cancer Survivorship: Challenges, Strategies and Resources." Please pray we will learn all that we can and that we will have discernment and yet not become burdened by a yoke of fear or worry. (See followup to this in the blog comments)

Thank you again for your prayers, love and support of our family!



This post is dedicated to Kristi Huddleston.
Thank you for inspiring me to see beyond myself
. You really are the angel without wings.
Love, Dawn



To see more beautiful bluebird paintings visit:


http://goodthoughts.typepad.com/photos/bluebird_paintings/index.html.
( or )
http://www.goodthoughts.typepad.com/

Tuesday, May 19, 2009

The Survivors Lap







Survivors Lap

Do you notice a survivor missing from that line up in the purple shirts? That would be CJ. The Relay for Life was more difficult for him than we expected it to be. He was unwilling to wear his purple shirt, would not go to the stage to his medal, and did not walk in the survivor lap pictured above. The more I tried to encourage him to participate and the more I tried to explain what would take place, the more he backed away and shut down.

This may be my fault as I did not realize that he would be asked to do those things so I did not prepare him very well. Still, it was surprising that he was so closed to the idea of going forward to receive a medal. He could not explain why. I told him I really wanted to understand why he was struggling so much. I asked him to share his feeling with me and to help me understand but he told me that I can't understand what he is feeling and backed away from me. I told him I really wanted to try and he said, "I don't want you to understand." (Enter the knife into the mother's heart!)

As a result of this unexpected reaction, we participated 'anonymously'. No one there, other than our friends and family, knew he was a survivor or knew the battle we faced these past eight months. There was an odd, aching feeling in my chest as I watched the survivors receive their medals and take the victory lap all unified in their stand against cancer. I had to hold back tears. I was happy for them and felt I knew a little of their experience. But I also felt CJ was missing in that lineup.

As I stood there feeling all alone in my pain, I continued to tell myself that I was not anonymous to God. He knows what I am feeling. He understands, and more importantly, He cares. He understands why I needed to be a part of this and He understands why, for some reason, I was not going to be a part of it in the way I had hoped.

I wondered why it mattered to me whether he walk in the survivors lap or not. I know most people would say, "It does not matter if CJ participated in those things," and in some ways I agree. I wondered if I wanted it more for me or for him. I believe I wanted these things for him. I wanted CJ to grasp just how blessed he is to be among the survivors. I wanted him to be proud of how well he fought and to encourage others to fight. I was painfully aware throughout the night that I could just as easily be at this walk standing over a candle lit bag 'in memory of' instead of 'in honor of' CJ. I knew his story was powerful and I believed it would affect and encourage a great many people there. But it was not to be.

The evening continued and at sundown a prayer was said and we lit the sandbags. As I reached in and lit his bag, I struggled again with my emotions. As I made my laps around the candle lit bags, I felt like no one understood what I was feeling. Then suddenly, I realized that is exactly how CJ was feeling; alone in his struggle, like no one understands or even can understand. I found it strange that we were both struggling with the same thing and yet it manifested so differently and we were unable to comfort and understand each other.

He found comfort and safety in hanging with his friends and tossing the football and keeping his heart distance from the event. I found comfort in drawing close to the event and taking in my surroundings and realizing I am a part of something I never would have dreamed I would be. Yet I am, so I want to experience it to it's fullest. I wanted to talk to the survivors. I wanted to talk with their mothers. I wanted to share CJ's story. I wanted to purchase bags for all of the cancer patients we had met at the hospital. I wanted to tell all those who thought this had nothing to do with them, like I did last year, that it could and it does! However, I did none of those things. I only felt them.

I took in the events of the evening and worried about CJ. I kept looking over at him as he played with his friends and wondered how this would all turn out. Would he ever want to be a part of these type of events as a cancer survivor? Would he turn his back on it once it was behind him? Would I be able to let this be a brief period of our lives that lives in the distant past and grows fainter and fainter with time, if that is what he chooses? Would I be able to influence him either way? Would I ever be able to understand the way he wants me to and would he ever be able to understand the way I want him to? I wondered and worried about all of this.

Then, at one point, CJ suddenly did draw close the event. He came up to me right before the bags were lit and asked if there was still time to purchase bags. He wanted to buy one for his Aunt Penny who has been an encouragement to him throughout this struggle and is also a cancer survivor. I told him yes and took him to the table where they sold them. He picked out a bag, added the label with his aunts name on it, and watched as the girl filled it with sand and handed him a candle. Then he placed the bag next to his. As I knelt there beside my son and looked at the bags I thanked God for this one brief moment that we could share in this event together even if it was not how I had planned.

The next day after the Relay I woke up full of regret for the things I did not do at the walk. For not sharing CJ's story even if he himself did not want to. For not planning better, for not preparing CJ more, for not expecting less. I had regrets for the bags I did not purchase that I should have. Regrets for not understanding more and trying to be understood more.

Before I was completely crushed with all the regrets flooding my mind, I dragged myself out of bed and decided to dump all my regrets off of my chest and into God's lap, along with a few tears. It was a lot lighter load to carry that day. And when a new regret popped up throughout the day, I went straight back to the dumping grounds and unloaded it.

After having the load removed from my view, I was able to see more clearly. My focus slowly shifted from the clouds of regret to a ray of hope. I realized CJ may not have worn the purple shirt or walked in the survivors lap at the Relay for Life. He may never walk in a survivors lap. That is his choice I suppose no matter how differently I may feel about it. He can avoid it if he is not ready for it and I can learn to respect that. However, there is one survivors lap he will walk and a robe he will wear that matters more than any purple shirt or candle lit path in this life. It will be that final lap on the narrow road that leads to the gates of Heaven.
That is the survivors lap that really counts.


"Blessed are those who wash their robes, that they may have the right to the tree of life
and may go through the gates into the city."
(Rev. 22:14)
___________________________________________________________________


CJ is doing really well. He had a great week last week and was excited to not have to go in for counts on Friday. That was a real treat! Instead, he was able to participate in a really exciting field day with all of his friends from the PE class he has been unable to attend this year. He also got to attend a picnic on Saturday with his friends from church. He has been spending lots of time riding his new bike and scooter outside and even practicing jumping his ramp and learning new tricks. He is doing really well in taking his medications at home and never complains about them. He has been steadfast with his devotions and bible reading and seems to be growing a lot in this spiritual discipline.
Our prayer requests at this time are for his continued healing and protection from any long term effects from the medications. And that God would help our family to understand each other in a way we have been unable to do so as of now.

Thank you for staying the course with our family and continuing to pray. Although we seem to have come through the most physical challenges this trial has dealt us, we now sense the most emotional and spiritual challenges being the hardest to contend with. I used to wonder how families split apart after walking through such serious trials together. I thought it could only strengthen them and draw them closer together. But the enemy stalks and knows when to pounce. There is much more to say on this but for now I just beg you to continue in pray for our family to have wisdom and strength to stand against the enemy.


"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes.
For our struggle is not against flesh and blood, but against the rulers,
against the authorities, against the powers of this dark world
and against the spiritual forces of evil in the heavenly realms."
(Ephesians 6:10-12)


Wednesday, May 6, 2009

Little Did I Know


Last year around this time, I took the kids to a function my church was attending. Little did I know at the time the significance that simple event would come to have on our lives.

Our church was promoting an event they participated in annually. We were encouraged to attend to support our community, our church, and to use it as an outreach and offer prayer to anyone who may be in need at the event. I am not sure if that is why I actually went. I remember distinctly debating whether or not to go. Chris wanted to stay home and work on a project, the kids wanted to see their friends who would be there, and to be perfectly honest I wanted to see mine. So while dad worked on his project, off we went. I did not ponder the depths of the event deeply nor did I consider the range of emotions that many people at the event may have been experiencing. Little did I know I would soon become one of those people who I never took the time to consider.

The event was the annual Relay for Life Cancer walk. These walks take place all over the nation annually to raise awareness and support for cancer research and survival. I had never attended a cancer walk or event prior to this night so this was my first exposure to something like this. It wasn't that I did not know people or have any loved ones who had experienced cancer. I did. My close friend in Virginia is a breast cancer survivor as well as my aunt. And I had recently come to know and care for a special young mom who had a double mastectomy a few months before.

Regardless of my involvement with these women, there was still that degree of separation between what I knew to be true and my own experience. You know that separation in our brains that says 'it will never happen to us' when we see or hear about a tragedy. I used to think it was a built in defense mechanism that protects us from having to emotionally experience everything around us. Now I think it is a deep lack of empathy and ignorance that keeps us from powerfully coming along side others in their time of need.

I do not think everyone has this flaw. Actually, I know everyone doesn't. They are the people we hear about that learn about a tragedy, and go beyond thinking 'how awful', to actually doing something to meet the person's need. They are the ones that stand in the heat and hand out water bottles to hurricane victims even though they have never experienced one themselves. They are the ones who volunteer at the hospital who have never suffered severe illness or tragedy themselves. They are the people I have met through this blog who went beyond thinking 'how tragic for them' and instead came along side us in a deep emotional and providential way. They are the ones who make a tangible difference in people's lives who are suffering.

I, unfortunately, had this flaw that allowed that degree of separation that I thought protected my heart, but really just left me blind and ineffective to how God wanted use me as His instrument or grace in others lives. And I have met them too. They are the ones who cannot talk to me about CJ. They are the ones who say, I do not read the blog because it is too sad. They are the ones, like me, who could cry at a powerful movie that was not real, but walk around a cancer event unaffected by reality. Little did I know God was about to change all that.

During a time of remembrance at the walk, I thought about those three women I knew, and was grateful for their progress and victory in their battle against breast cancer. I remember thinking of them as I walked around the candle lit sand bags displaying people's names and promising myself I would buy a luminary in their honor the next year. Little did I know I would be purchasing one with my own son's name on it.

Even though there were those brief moments of remembering those I knew, I mostly watched the kids play and visited with my friends. I remember keeping a close eye on CJ because, by this time, he had already begun to suffer with pain in his back and stomach. I specifically remember watching him walk around the illuminated sand bags while chatting with his friends. I myself walked around these bags unaware of the deep significance each one held in someones life.

Ashamedly, I was more aware of what I considered to be bad taste in music being played and bad taste in costumes worn by some of the dancers that were present than I was of why the gentleman with three young girls were kneeling in front of a bag for an extended period of time. I did not pay much attention to the others at the walk or wonder what brought them there. I did not wonder how cancer touched their lives personally. I did not wonder why God brought me to a cancer relay or how He may want to use me in the many hurting lives all around me. Don't get me wrong, I prayed for those around me that night. But unfortunately, I can't say I felt for those around me that night. Therein lays the huge degree of separation. Little did I know that degree of separation was about to close dramatically.

CJ's diagnosis, four months later, was a whirlwind of emotions and confusion. But within that whirlwind there are a few poignant moments that are etched in my brain and on my heart forever. One of those moments took place about a week after CJ's diagnosis of Stage 3 Lymphoma. I was walking in the hallway on my way to CJ's hospital room and passed a poster that said "Relay for Life Cancer Walk" when I froze. It suddenly hit me with breathtaking emotions that we had attended that cancer walk completely ignorant to the fact that CJ would have had cancer in his little body at the time. I remember stopping and staring at the poster as if it were a movie screen replaying scenes from the walk. I saw us walking around bags lit in honor of survivors and of those who lost their battle. The significance of those bags suddenly changed right there in that moment in my heart. I saw the faces of those I did not really look at or reach out to at the walk. I saw the dad kneeling by the illuminated bag. I saw people with tears of grief and tears of joy. I remember standing there in front of the poster with my heart pounding and realizing for the first time, "God, You knew! You already knew it then. Oh my, the implications. Forgive me. Examine me. Teach me." And He has!

"Test me O Lord and try me, examine my heart and mind;
for your love is ever before me and I walk continually in your truth."
(Psalm 26: 2-3)

This Friday, I will once again attend that Relay for Life with CJ. I am not prepared for the wide range of emotions I will experience but I welcome them regardless. I can tell you that I will not be focused on what type of music is playing or what type of attire the performers wear. I will not be there to see my friends or watch the kids play. I will be the mom in tears, kneeling in front of an illuminated sand bag that says, "CJ, never, never, never, give up. (Philippians 4:13) Love, Mom and Dad."

"Praise be to the God and Father of our Lord Jesus Christ,
the Father of compassion and the God of all comfort, who comforts us in all our troubles
so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives,
so also through Christ our comfort overflows."
(2 Cor 1:3-5)



CJ's Relay for Life Web Page can be found by copying and pasting the following address into your URL:

http://main.acsevents.org/site/TR/RelayForLife/RFLFY09FL?px=10779102&pg=personal&fr_id=13459

Relay for Life, Miami Lakes Optimist.
Friday, May 8, 2009