Thursday, July 5, 2012

One year ago today...

One year ago today, our world became much clearer and much, much more frightening. [blog post from July 5, 2011] One year ago today, we learned how sick Little Levi really was. One year ago today, we faced a choice; we could turn away, focus on ourselves, and begin sinking in a dangerous trap of self-pity, bitterness, and defeat. Or, we could open our hearts, ask for help from our family and friends, and rely on God to see us through what we knew were going to be several dark coming months. You see, there really is no in-between. You can't do both. Thankfully, because of the immense and immediate support structure and outpouring of love that overwhelmingly flowed into our lives, we chose the latter. And what an experience it has been.
So - on to the important stuff. The question that we get asked almost daily. How is Little Levi? Well, I wish you could all see him, just spend five minutes or so watching the little blonde-headed streak of energy scream through the living room, the little personality that makes you turn your head to hide your smile and laugh no matter how frustrated you are with him, the little excited fan filled with excitement as he claps and cheers at baseball and hockey games, the little one that squirms in your arms as you take the occasional moment to wrap him in a loving embrace and thank God that he's still with you. You would know then, that our Little Levi is healthy, thriving, and enjoying the wide and wonderful world of a two year old boy.

A lot has happened since our last update. I know it's been a few months since I have written about our Little Levi, but I have to be honest; part of that was purposeful. The decompression that we experienced (and continue to experience) was at times something that needed to be done in private. After spending months completely open for all to see, it was necessary to regroup as a family in order to regain some sort of balance. The last couple of months have been whirlwind, and have included birthday celebrations, family trips, doctor's checkups, a case of the chickenpox, and countless hours on the swingset.

Yes - checkups. We've had a few checkups, including weekly blood tests for awhile and one last MRD test to confirm that Levi's leukemia was eradicated. The short answer is - yes. All tests have come back clear and clean. In the word's of the doctor, all tests have returned as good as they can get. He will continue to have checkups every month until next year, then they'll start spreading out again. In December, he'll go back to the hospital for a battery of tests (including an EKG and other organ function tests) to see if there has been any damage from the strong chemo he received this past year. We will deal with that when we get there. We know that Levi is healthy, and from a distance you could never tell how sick he once was. But if you get him to sit still long enough, the signs are there. The scars on his back, knee, chest, neck, arm, and head illustrate the battle he endured, each one linked with a different test, procedure, poke, or line. But, if you do indeed get him to sit still long enough, you'll also see that spark in his eye, the one that catches me off guard, the one that proclaims that this little two year old fighter cheated death. Really, though, that's not entirely accurate; he didn't cheat it, he and his God beat it.

We have been enjoying our summer, and grow more in love with our little boy every day. But there are struggles - emotional, physical and spiritual. The post-treatment phase is an odd time. You want to return to normal, but you realize that there's no such thing. Normal now seems to be a misconception, a naive assumption that there is a level state of being in which the majority of people live, all sharing some form of general contentedness. But there is no normal now. There are things that feel routine, things that seem familiar - things that you knew or felt before your world was turned on its head, but nothing is, or was, or ever will be really normal.

At times you look back and your emotions flash red; you fall into anger, wondering why your child had to go through this. This can easily happen when browsing through old pictures or reading old cards and letters of encouragement. These red feelings boil down to one key theme; it's not fair. But what a dangerous, slippery slope that is. I’ve struggled with the idea of “fairness,” and have personally come to the conclusion that it is a standard determined by man based on our limited view and experience that has no place being used as a measurement for God’s will, which we can’t possibly fathom or understand in full. Instead of looking for things to be “fair,” I should strive to just be in God’s will.

At other times you look back and your emotions flash yellow; you realize that many who travel this road do so more than once. You know how quickly a little one can turn for the worse when a disease as frightening and evil as cancer picks up speed and begins to consume a young life. You know what it's like to experience true fear, and the sad news of other little fighters losing their hard-fought battles is crushing. But God's promises outlive these fears. Relying on Him got us through Levi's battle, and we continue to rely on them daily. I don't know what's in store, but my God has and continues to move mountains.

Any trip backwards through memories will trigger heavy emotions. Some are happier, others more emotional or dark. But we continue to rely on God for protection for our son, and for the strength, courage, and patience it takes to keep on. We ask for your payers of praise for our son's health and life, and also for prayers of healing for all other small precious ones who are engaged in a battle with an enemy unlike any other they've faced. Fight for and with these little warriors and their families; support them in prayer, support them financially, take them meals, hug them and let them cry on your shoulders, forgive them of their little slips and outbursts, and register to be a bone marrow donor. We have, and continue to thank God for all of you. As I've said before, I long to thank you all in person for the role you've played in Little Levi's battle, but if I can't here on earth, I will when we're called home and are standing safely on the other side.

We love you all, and will continue to keep you updated. -Michael, Stephanie, Caylee, Little Levi