Yesterday was Kai’s official birthday. My little baby boy is 2!
It’s hard to believe he has only been in my life for two years. I can hardly remember life before him and I just can’t imagine my life without him.
All week I have been thinking back to the day of Kai’s birth, and then to his first birthday. As fast as it goes, it has been a long hard road for us so far.
And as difficult as his early life was, first getting NO sleep and fighting every day to find out why, then dealing with the shocking reality of diagnosis and treatment, nothing has compared to how hard these past few weeks have been.
When I see him in pain, struggling to sleep or eat or go to the bathroom I know I have made the right choice taking him off chemo. But on those good days when he wakes up and gives me a little smile and is happy and content just sitting in my arms, I am overcome with that urge to save him…to keep fighting…to do whatever it takes.
As I think back to his birth and then his birthday last year I am quickly snapped back into reality.
I look at those adorable pictures of him taking his first bite of his birthday cupcake. I see him smiling in his daddy’s arms. I see him holding onto a new toy, and it is so obvious how much he has lost since then. It is so obvious what a struggle his whole life has been.
Today I look back and see how much better he was back then, but if I really put myself back to that day, I remember just how bad I felt he was doing at the time. And to think it has only gotten worse from there…
Yes, a year ago he could eat a cupcake. He could sit up (if I was right behind him). He would smile. He would hold on, just a little, when I carried him. He could see.
But he also tired easily. He still couldn’t explore his world. He couldn’t stand or walk, like the other kids his age. He still hadn’t said his first word. He was recovering from shunt surgery. He had just gotten his g-tube and by last September the chemo was already starting to take it’s toll. This was not the life of a typical 1 year old. It was sad and it was hard and it was a million times better than where he is today.
Looking back, I would give anything to have that Kai back.
I have spent everyday since then wondering if he was going to make it. Wondering if we were doing the right thing by putting him through all of this. Questioning everything backwards and forwards. But each day we would see those brief smiles, that adorable frosting face, those big brown eyes, that little bald head, the glimpses of hope, the good days, the minutes of progress no matter how small, and how can you NOT fight for that??
But it’s different now.
As the months went on, and he continued to get weaker I blamed the chemo. There is no doubt the chemo has made him feel worse, but week after week at the clinic I would see the other brain tumor kids, our friends, going threw the same thing as Kai yet they we’re growing, advancing and living life. Meanwhile Kai was only falling further behind.
Every month I would question ‘When is enough enough?’, ‘Is there something more I can be doing?’, ‘How will I know when to let go?’. His team would say ‘We expect Kai to be a long term survivor.’ and ‘ There are many more treatments we can try!’.
So every month we kept fighting.
We have adjusted his meds, given him chemo breaks, tested him for everything and anything that could be affecting him, but nothing has helped.
It’s hard to look back, and since this all started it has been impossible to look ahead.
For My two years with Kai so far I have had to let it all go and learn to just live in the now. I have adjusted and accepted this life.
As much as I wish I could have eliminated his suffering and fixed him from day one, I can honestly say I don’t regret the process. I am not angry at the doctors for taking so long to diagnose him. I do not blame his team for having hope and encouraging us to push on in what seemed like a hopeless situation. This has been our life and each day, each decision was what we needed to do on that day. And so putting my future, my hopes and dreams for Kai, aside and to live completely for today…today I know that our decision to stop chemo is the right one. Kai has survived long enough. It is time to let him rest. Let him sleep. Let him snuggle and be comfortable. And eventually, one day, I will have to let him go.