Tuesday, April 5, 2011

Make a Wish!

"Make a Wish! And this is the first time you can do it out loud and it will almost definitely come true!"

Those are the words the Make a Wish coordinator said to CJ when she came to meet with them this evening. Can you believe it worked out that they came tonight of all nights? It was scheduled for last week but got canceled when one of the wish coordinators got in a small car accident. So they rescheduled......for this Tuesday...tonight! CJ's 12th birthday. How cool is that?

They showed up with balloons and cupcakes for him in honor of his birthday. We sang to him for the first time today once they arrived. They sat with CJ and really helped him narrow down his wish. I won't announce here what it is yet because they still have to get it approved. But once we know for sure we will be sure to let everyone else know.

God is so kind. He orchestrates things in our lives even down to the very day. As I watched CJ work with the wish coordinator through all the different ideas, I couldn't help but begin to think it didn't really matter to me what he picked. I already got my wish! We were sitting there celebrating his 12th birthday with him. That was enough for me.

I will be honest and tell you the idea of Make a Wish used to scare me. I did not want to ever hear one of the nurses or child life specialists come in the room and mention Make a Wish because I was sure it would mean the end was in sight. I remember a mom who fell apart at the hospital when the social worker mentioned taking a Make a Wish trip. She thought her daughter was terminal by just hearing those words. I guess deep down I knew it did not mean that and I had accepted that CJ had a life threatening disease that could easily claim his life at anytime, but Make a Wish still evoked feelings in me I was not prepared for. Until now! What perfect timing.

Sunday we attended the celebration service for Mackenzie. I spoke and I was surprised, and yet not so surprised when CJ went up to the open microphone. People were sharing different things about Mackenzie or different things they would remember about her. I will share what CJ said because I truly thought it was profound.

Many people ask us how we do this. Many people avoid us because it is (in their words) "too painful". We had many people tell us they don't read this blog because it made them cry.
Listen to CJ's words spoken at Mackenzie's celebration of life service...

"When Mackenzie first passed away I was in a lot of pain. I told my dad I did not want to go through this anymore. I did not want to get close to another child only to lose them. Then my dad asked me, 'Was it worth it? Was it worth knowing Mackenzie?' And the answer is YES! It was so worth knowing her even with the pain of losing her."

So there you have it! That is why we do it. It is worth it! Yes it is painful but it is worth every ounce of pain and effort to know these amazing kids. To know these amazing families. To know these amazing people that work with them. To know these amazing volunteers that spend time helping the families or coordinating events or granting wishes. To know the amazing donors who give of themselves, their talents and their treasures for the sake of others. It's worth it.

If I could Make a Wish right now it would be that each of you would know it too.

Happy Birthday CJ.
Thank you for all the lessons you have taught me.
Thank you for reminding me it is worth it!

Saturday, April 2, 2011

The Goal

Someone asked me the other day if I had 'writers block' because I had not written on the blog in so long. I thought about it and realized it is not writers block per say but writers fear. Fear of what may come out; fear I won't have the words to accurately articulate all that is happening; fear that if I got deep down honest with things I am thinking and feeling I may unintentionally offend or confuse someone.

My last blog post mentioned Mackenzie. Many of you know 6 year old Mackenzie either personally, through her family's caring bridge page or through our foundation. As most of you know by now, Mackenzie's battle against cancer is over. She won! She is in victory with the Lord Jesus! She is cancer free!

In the very early hours of March 3rd, I stood by her side holding her little hand as she slipped from this life into the next. Her parents and her sister were on either side of her holding her and encouraging her, as they whispered in her ear reassuring her. They knew she had been hanging on for them and they were telling her it was okay to let go.

I did not understand what I had done or how I had affected this family that they would allow me the privilege to be there with them in that moment. Mackenzie had become my Goddaughter only a couple weeks before although she had captured my heart long before that. I stood there and realized intellectually what was happening....a life was ending. But to be honest, it did not feel like an ending. It felt more like a beginning. I realized this was not the end of anything other than her physical presence here in her flesh. It did not feel like a loss. It felt like a victory. She won. She was cancer free.

Notice I said, "she won" I have so often struggled with the words used when a child dies of cancer. I will often read or hear others refer to them as having "lost their battle with cancer" and it always bothers me. I guess if the only goal is physical survival, I can see those words being used. But it can't be our only, or even main goal for our children or even for our own lives. Survival is not the goal. It is a gift. A precious gift. But we have to remember that everyone will face what Mackenzie faced. EVERYONE!

Sure, she faced it sooner than some. But I have to tell you, I am not convinced she lost anything. She touched and reached more lives in six years than most will in 86 years. She put it all out there. She had cancer. She knew she was going to die from it. She always knew. Yet she protected her family and fought and went out everyday to live! I tell my kids not ro remember that Mackenzie died.....but that she lived. Truly lived! And that is how her mom would want you to remember her. That is how I remember her.

I remember her sitting at the Panthers games on my lap shortly before her final entrance into the hospital. She was coughing and it was that cough that you just know what it means. when you hear it. I knew when I heard it and I looked over at Chris and said, "the cough is not good." So I sat there with her on my lap and I knew it was a moment I would cherish forever. I wanted it to last a long time. Her just sitting there, being with me. And it will last. It will always be with me along with the other hundreds of moments, of laughs, of smiles, of hugs, of living.

CJ and the rest of the kids took it hard at first. The older two, Allie and CJ, took it the hardest. Allie was close to her and CJ was bonded to her through cancer. I kept trying to process and monitor what it was like for him. But I realized I could not filter it for him. He knows. He gets the facts about childhood cancer. He has to go through it and process it in his own personal way. Surviving comes with its own sets struggles and trials and I know CJ will work through those as well at different stages in life, especially at times like these.

He is processing it even while still living through this himself. He had his appointment shortly after that. We had his port flushed and his counts done. Everything is looking good. We are fast approaching his final scans before port removal!

Even though our main doctor said we should do this, and has ordered the scans, one doctor recently tried to tell us it wasn't necessary. We feel it is and will move forward with them. We need a clear set of scans with some time off of chemotherapy. We need to see that his body and immune system has gotten ahead of this without the help of daily chemotherapy meds to maintain his remission. We need that before we take the port out. We feel after two years of this we should have that right. We just pray AvMed will see it that way. I have bit my tongue continuously about that topic for two years and now is not the time to go there....lets just say there may come a time we need to not only pray for doctors and nurses and patients but for the office clerks sitting behind a desk making a yeah or nay decision that change someones life forever.

In addition, we were recently informed about a Survivorship program through the University of Miami that CJ may become a part of. I am smiling as I type that because my spell checker does not recognize the word 'Survivorship'. That is exactly what the program is about! A new breed of people we have never had before. In the past, a childhood cancer survivor was extremely rare and people just basically chalked them up to be miracles. And considering what they went through they really really are. We are extremely blessed to know several of them.

Today however, we have lots of children like CJ who are cancer survivors. They are going to become adults and live among us. We don't know what that looks like or what challenges they will face. We don't know what the long term affects with be on them or their future families., their children. The program will follow them and monitor them. It is my understanding they will be followed by a team of doctors including cardiology, endocrinology, neurology, psychology, etc. So we are very interested in this and looking forward to being a part of such an important program.

Even if the cancer never returns for another showdown, CJ will now face the effects of the medications and treatments he endured to survive. I remember sharing with you how we listened to a seminar during CJ's chemotherapy called, "The Consequences of Survival" that dealt with the late effects of childhood cancer treatments. Although, it seemed like such an odd statement at the time, we are finding ourselves entering that realm of cancer now.

We are thankful every day that CJ is still with us and that he is considered a 'cancer survivor" However, I will be perfectly honest with you and tell you......our goal is still heaven. Surviving is a temporary blessing. Eternity with the Lord is the goal. This just means we have more time to prepare!

"For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling.... Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.

Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. So we make it our goal to please him, whether we are at home in the body or away from it. For we must all appear before the judgment seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad"(2 Cor 5:1-10)

Tomorrow we will celebrate the life of Mackenzie Grace Gonzalez.

Calvary Chapel Boynton Beach
Sunday April 3rd, 2pm
Open to the public to celebrate with us.
Do not wear black!