I’m trying to make sense of all of this. It must be natural, I think, to try and reason it out when something bad happens to someone you love. What could I have done differently? What if? Why her?

Simon with multiple hats

I’ve noticed that when great things happen for us we rarely cry out “Why me Lord? Why, oh why, did we have to win the lottery?!?”. It’s just the good old-fashioned ungrateful state of our hearts. I’m working on that. Trying to be grateful for this extra time with Ramona instead of bargaining for more.

Here’s how my thought process goes: God, I know I said I would be really grateful and never ask you for anything else if you allowed us to someday have a family. I know I haven’t always felt grateful when I’ve been up all night with Ramona, then up all day with Simon. Can we start over? If she’s able to come home and I’m really grateful, will you allow her to qualify for that second surgery? If I’m really extra grateful for just one more day with her, can she survive to kindergarten? If I’m just sooo ecstatically grateful for just one more moment, can we see her raise her own children?

I know this is ridiculous, I know life is not a merit based system. It’s just hard to feel so powerless, to wait and see. I am grateful for today. I’m grateful for the opportunity to feel the love and support of the people around us. I’m grateful that Simon still seems to be the crazy, happy kid he was before this all happened. I’m grateful that my own heart keeps beating through all this. It’s just hard to know sometimes if I’m bargaining my gratitude with God.

Thanks for listening, thanks for caring,

Jane (Ramona Balboa’s Mom)