Goodbye 2011. I didn’t like you one bit. It was a painful year, but we are still beyond grateful for the miraculous year it was despite all of our pain and suffering. There were several months where we were living on borrowed time with our son. Then there were the triumphant moments of sheer rejoice. I can’t even begin to tell you what it feels like to welcome a new year while holding our special boy in our arms. So with that, I am excited about the new year ahead of us. A fresh new chapter in our lives that is filled with promise, hope and healing.
I feel like I’ve been carrying the weight of the world on my shoulders for well over a year. A great friend of mine (also a cancer survivor) often reminds me to live in each day. Not to get so caught up in the past or the future. I am resolving to try my best, but I can’t make any promises. I’m so plagued with worry all the time and I’m just not sure how capable I am of freeing myself from the heaviness of it all. If I’m not thinking about Ty, I’m thinking about other children who are fighting cancer, and that is something I don’t ever want to stop doing.
I don’t want to put cancer behind me. Not ever. I want Ty to be cured forever, that’s for sure, but his innocent little soul was forced to endure pain that no person should and I want to make sure that we never stop fighting to find better treatments and prevent such pain and suffering among our children (and our mothers, fathers, sisters and brothers) in the future. I mentioned how happy I am about the visibility St. Jude’s has had this holiday season and I hope that we see gold ribbons on cereal boxes, yogurt tops, toys and apparel in September 2012 and every year hereafter.
So, in rereading the above paragraph it sounds like I am contradicting my resolution to travel lighter and pick more daisies. I guess I just need to find the balance. I hope I can find a way to remain passionate about the cause while regaining some of my mental health slowly but surely. I need to salvage some of the fun, carefree and kooky girl I used to be. I miss her.
What I want for Ty this year: I want him to be able to color more than a scribble on a sheet of paper. I want him to be able to manipulate his toys without getting sad and frustrated. I want to see him proudly participate in circle time at school. I want him to have a play date with a friend. I want him to grow taller than his baby brother. I want him to gain at least ten pounds and to enjoy food again. I want him to walk. Hell, I want him to RUN. We have all year to make these things happen. I pray that he doesn’t suffer any additional setbacks so all of these wishes can become reality for him.
Of course, more than anything I want him off treatment. I don’t want to check into the hospital if he runs a fever. I wish we didn’t have to worry about his platelets every time he gets a bloody nose (like the nasty one he had this morning). I want to be able to tell him that he doesn’t need giant needles stuck into his chest each week. But all of those things aren’t likely in 2012. He will be in treatment for cancer this entire year. But that doesn’t mean he can’t continue to improve. His red and white blood cell counts have remained very strong over the past two months. Hopefully the daily medication is at the right dosing for Ty that will allow him to recover even while he remains in treatment. Hopefully this weakness due to intra-cranial bleeding will be the only major hurdle impeding on his recovery this year!
Ty’s weakness on his left side is still very severe. I am so sad for him when I watch him struggle to hold himself up in a sitting position, or when I see him use his right arm to pull his left arm in a new position. When we ask him about his arms, he shows us that he can raise his right arm “wheelie good!” but then he pulls on his left arm and says, “this one just not work. It’s too weak.” It’s no surprise, though, that it gets me down way more than it gets him down. He struggles, but he still scoots across the floor as best he can, and laughs out loud playing with his toys. He continues to enjoy life. Every minute of it. Let’s all learn from Ty. It’s not too late, the daisies are waiting.