I don't blog as much as I used to. I actually have to force myself to do it sometimes. It's not as though I don't enjoy it, it's just because this is the place where I used to release all of my fears, all my pain, the daily heartache we were enduring at St. Jude's. Now that we're not in the midst of pure tragedy anymore, I feel as though I don't have much to say. Or maybe I do and I'm just scared to say it. Releasing your emotions can be exhausting sometimes.
Our lives have been so normal lately. McKaylee and Landen have become just like any other normal brother and sister. They fight, they laugh, they play together, they pick on each other and sometimes they'll shower each other with love and affection and it just makes my heart melt. Our routine has changed a bit, as well. Landen is in Awana's at our church and has recently started playing baseball with a local league here in town. Mckaylee is still going through quite a bit of separation anxiety, so she prefers to be with me unless I decide to pry her off my hip....which I do from time to time. We are a lot busier than we used to be but I enjoy it nonetheless.
It's interesting to me how quickly our lives have changed in the past year. We went from a peach fuzzed, skinny, constantly fatigued, always medicated not so chunky McKaylee to a "plump", energetic, giggly, beautiful-haired little girl who is currently off all medications. That's a big leap! And through this transformation, somehow I forgot. I forgot just how tiny she was after being so sick during treatments, I forgot how much pain she endured on a daily basis, I forgot how bald her little head really was. It hurts so much to look back at pictures that I often try not to.
But the other day as I was updating her caringbridge page, I decided to read back on some of the journal entries....back to where this journey began. And what I found absolutely brought me to tears. For there we were, somewhere in the middle of our story, surrounded by chemo treatments and constant sickness and I was dying just watching my little girl suffer. I wrote about how much I missed home, how much I missed playdates with friends, church on a Sunday morning, a lazy Saturday at home. I was desperate for my little girl to experience her childhood for what it should've been, for her to be able to walk without falling, to play without getting tired, to sleep without waking up sick and in pain. And as I read those words, I was humbled. For here we are. We are living in our answered prayers and we often don't even realize it.
I take life for granted so much more than I used to. My little girl's every step, every meal and every milestone used to be something I praised God for on a daily basis. Now I'm lucky if I can keep my eyes open long enough at night to finish "talking" with God. I don't want to forget any of it, I think that what we went through changed us and should continue to change us forever. I mean, it's a miracle that our sweet girl is alive, much less thriving and developing beautifully.
I guess I've just had this subject on my mind for awhile and, as though to add fuel to the fire, I read a caringbridge update the other morning. It was from the mom of another brave St. Jude's buddy of ours named James. Although he was diagnosed with an aggressive kidney cancer, he did well through treatments and his mom held steadfast to her faith that he would be healed. Unfortunately, he passed away six weeks ago. Here is one of her more recent journal entries:
day marks one month since James left us. I miss him more than words can say. Many things have gotten easier for me, but there is always that one point in the day that you realize they are never coming home, and that is a horrible feeling. Last night I couldn't sleep. I just kept thinking about our last night with James. We were up all night with him. He just couldn't get comfortable. James would ask us to rock him, and ten minutes later he wanted to get back in the bed with us. He was hurting, and I couldn't do anything to fix it. As a mom, you always want to fix whatever is wrong with your baby, and I could bring him no comfort that night. I hate that he had to go through that, and I hate that there was nothing I could do. James was such a loving and caring little boy, and he didn't deserve to hurt or go through any of the things he endured. Eve ryone told me that anger is part of grief, and I am beginning to find that true. I get very frustrated that James was taken from me. I have been going to church, but it doesn't bring me the comfort it did before. I get frustrated because I always trusted in God's plan for our family. I knew that if I trusted God and prayed everything would be okay. God took James from me, and I know he has a reason, but it is very hard not to get mad sometimes. The bad thing about this is that I don't want to get mad at God. He is my only hope that we will one day find peace with the plan he has for us. It's all hard to explain, and I don't think you can really understand it unless you have been through it. I did attend mass this morning, and after, I went to James' grave. I talked to him and watered the tulips I planted for him. Nothing makes me feel better though. It's as if a piece of me is literally missing. I feel the void, and I can't find a way to be whole. I just want him back. I want to hold him, kiss him, and listen to his little voice saying mommy I love you. It is even hard to go to the grocery store. I feel lost because 90% of the things I would normally have on my list we don't need anymore. Michael and I hung up some of our family pictures this week, and that was hard too. I looked at James' picture, and it hurt to think we will never update his pictures again. This is it. He is really gone. I don't know what else to say. It is very hard to not have James with me, and I just miss him more and more each day.
I was in tears after reading that. It brought back so many of my own fears about losing my little girl. It almost made it too real for me to handle. I've read this post several days in a row since I first read it and, honestly, it's helped me tremendously. This battle needs to be real to me, it needs to stay fresh on my mind and I never want to lose the perspective in life that it has given me. The fact is, neither one of my children are guaranteed tomorrow and both of their lives are so precious to me. Sometimes I get tunnel vision and I forget how important today is.....just today. I hug both of them just a little bit tighter at night and try my best to not let the daily stresses of life override the precious moments that I'll never get back. That monster of a tumor might still be in her head but for just today, that little girl is healed. I don't have to wait for the tumor to disappear to claim a miracle in her life, no, I'll claim that now. She can run and jump and is finally enjoying her childhood for what it should be.
Now if that's not healing....I don't know what is.