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Where Our Heart Is


11-08-2008


People ask us all the time, "How's Jaymun? Still doing well?" or they comment, "Wow, he looks great and so healthy! He's such a miracle!" And all of the above is definitely true. He is walking and running and playing and laughing and causing mischief and in true toddler fashion, keeping us on our toes. This is exactly where we wanted to be at this moment. Home again, all together, with our Jaymun right in the midst of the chaos. We have learned to take what life gives us and celebrate even the small things.

So, this is "us" at the present. This photo was actually taken at the hospital in August by a very talented organization called Flashes of Hope. Professional photographers in the Milwaukee area volunteer their services and set up shop once a month at Children's Hospital. They take photos of kids with cancer and other life threatening illnesses along with their families free of charge. I still have a hard time grasping the concept that Jaymun qualified as as being in the "terminally ill" category not so very long ago. Terminally ill. He doesn't look as though he fits the profile, does he? Chubby cheeks, huge smile, head full of hair...it's typically not the phrases you'd use to describe a child who's been sent home to die.

However.

Jaymun is not in remission, dear readers. We have great hope that remission may still be in sight, but we are gently and cautiously reminded by his oncologists that it's a long shot. We are a family of great faith that "long shots" are God's specialty. We have seen the power of miracles before in Jaymun's life and we are encouraged by the fact that God has already done the impossible where our little boy is concerned. We have witnessed firshand the magnitude of your prayers and have been blessed throughout these past months with the financial help of many people. We didn't arrive to this place on our own strength.

We are an ordinary family with a very extraordinary little boy. It's not a situation we take for granted. We know he wasn't expected to make it back in July. Three weeks, they said. We give him three weeks before all his organs shut down. It was the most intense, most agonizing time in our lives. I don't think I will ever blog in public about the whole experience. To touch upon it rips open emotional wounds that will never fully heal. We don't really spend great quantities of time reflecting on what happened to us this summer. I will say this: To be near a dying child is to walk upon sacred, hallowed ground of hellish proportions and only those who have brushed elbows firsthand with this horror can truly relate to one another. We have met so many precious children who have lost their courageous battles with cancer in the past two years. Out of respect for their families' sorrow, I wish to tread lightly when it comes to professing that we know what it is to truly understand grief.

I posted our family photo above for a reason. Because what most people don't know is that just one month before this photo was taken, we had our first photo shoot by Flashes of Hope. Jaymun was incredibly, deathly sick and relying on morphine to help control some of his pain. We didn't know what the next few days or weeks would bring. I realized it could very well be the very last time a photo was taken of all of us together. We certainly weren't prepared for a portrait session--living full time in the hospital doesn't afford the luxury of "dressing up" and we were approached on very short notice to have the photo taken. Jaymun had just had another dose of morphine moments before and was out like a light, completely unaware of the bright flashes aimed in our direction. We gathered around him and made the best of a most "untraditional" photo shoot. When I look at the photo below, I see extreme fatigue and weariness. I see worry and concern and stress and intense sadness in our eyes despite the obligatory smiles upon our faces. I see deep shadows under our eyes that even professional editing could not completely erase. I see a family all too familar with heartache.


Despite my relief in seeing Jaymun healthy today, I will never feel completely safe again. As much as I can try to squeeze every last drop of joy out of our present circumstances, I'm wholly aware that Jaymun was sent home to die in the minds of those who diagnosed him. Conventional medicine has failed to obliterate the leukemia that lurks throughout Jaymun's body. Three months of living in a hospital. Another summer come and gone. We are now the family that other families pray they will never become. Jaymun didn't come home because he was cured. He came home because there was nothing more they could do for him. We were told, "Enjoy the time you have with him. We wish you well." And so home has remained what is was always meant to be. A haven.

Dave and I feel strongly that we owe it to our children to show them that it is possible to find the beauty and goodness amongst the darkness. I can't tell you how many times it has helped me to count our many blessings. They are always there, sometimes hiding in shadowy pockets of despair, but still shining faintly nonetheless. Painful circumstances bring about the oddest reflections upon life, don't they? I'm not one to pray for God to shower me with afflictions so that I can put these nuggets of wisdom to the test, but I do know that He has always been faithful to show us glimpses of hope even throughout the very darkest of hours.

From our family to yours, we thank you for your own perserverance in praying for our Jaymun. We haven't given up hope that somewhere out there lies a cure for leukemia. Dave's relentless research has proven to be successful thus far and we remain optimistic that Jaymun's blood will keep responding well to the regimen of natural supplements we give him. I am always uneasy while we wait for his lab draw results to come back every week, but I've come to the realization over the years that there is very little I can do to change the outcome. I'd much rather keep my focus on cherishing the treasure of being the mama to this Elmo-loving, milk-chugging, morning-snuggling, crazy-haired little boy.

And for me, in this present moment, that's more than enough...


"For where your treasure is, there your heart will be also..." Matthew 6:21

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