It’s hard to believe it has been a year since Kai was diagnosed. In some ways I feel like this year flew by but at other times I can take myself back to that day like it was yesterday.
At this point it is hard to remember life before brain tumor and I now know it is unrealistic to imagine a life after brain tumor.
“The first chemo day was really hard on me. Well the day itself went fine, he actually did great, but leading up to it was hard. I guess this was the final step hat made it all real for me. This is now our life for the next year and a half. Chemotherapy is the best option we have to help him, which still seems so wrong. How can this be good for him? How can this be our life? How are we going to do this, week after week bring him in knowing it is going to make him sicker and sicker, hoping in the end it makes him better???
People tell me you get used to it and this all eventually just becomes routine, our new normal. We have a long road ahead and I guess what they say is true, we just have to hope for the best and take it one day at a time.”
We continue to live one day at a time, hoping for and working towards a better tomorrow.
We had another ‘stable’ MRI last week and Kai has continued to tolerate the new protocol fairly well. These little blessings, while not as grand as we hope, are the things I try to keep in the front of my mind. TODAY Kai is doing OK.
But with all the good we try to pick out of this situation day to day, it is a hard sell when you look back a year….
The truth is, in MANY ways Kai’s life continues to get harder each day.
I wish I could say a year later he is doing great, or even better than before, but in most ways he is not.
I am thankful that he is not in the pain he suffered with the first 8 months of his life. I am thankful we at least now know what was going on. I am thankful that we have so many wonderful people supporting and helping us. I am thankful that we are doing all we can to help him, but it is so sad that all this help and love and support really still isn’t enough.
A year ago Kai could ‘stand’ with the help of his dad. Kai would bite a pice of watermelon. Kai could drink from a sippy cup.
He could sit in a high chair and not fall over. He could hold his head up when on his belly and even roll over one way. He could sit up on his own on the floor.
He would hold on when I carried him. He would cry if he was hurt. He could see.
It has been a long year.