I remember standing there the day we found out. I remember the doctor saying it. The way she hesitated and I knew it wasn’t because it was hard to pronounce. She hesitated because it was bad. And I remember looking at her and she tried so hard to maintain eye contact, so hard to look me in the eye when she answered my questions. No there is no cure. Hopefully we should have 3-5 years left. And I remember trying so hard to not fall over for the second time in J’s life when a doctor has all but knocked me off my feet. Three years? That is what we hope for? I couldn’t wrap my brain around it, this “good news” of 3-5 years. I remember Hubs wrapping his arms around me as I looked over Jameson and saying how gladly he’d take three more years. He knew so much more, understood so much more. It wasn’t a good thing to be the doc-in-training at that moment. And I just couldn’t see how that could be a gift, to have three more years. I could only see the death sentence.
It was all a blur, the days and weeks and months of fighting and praying and hoping and dying. We all died that day, not just him. And I obsessed over these three years we were going to have left. I thought about the trips to Disney and the mountains. The beach and Italy. I started making the list of everything we would want and need to share with him before it was over. The billions of pictures we would take. The video camera we would need to buy. I thought about how impossible it would be to say “no” ever again. How I would end up letting him have ice cream for dinner and never have a bedtime. Because isn’t that what you do when your child is dying? Can there ever be discipline or normalcy ever again?
I thought about how we explain the new rules of life to Little man. You have to follow rules because you will live to 90, but your brother, he will only make it to six, you see, so he gets a free pass. And then I thought how much Little Man would need that free pass, too. How do you tell your 4 yr old that when he is 7, his best friend and brother is going to die? So make sure you are nice to him. Make sure you play with him. Make sure you cherish him. You think it, but you’d never really say it. Because there really isn’t any way to say that. I had these thoughts for days. Oh how awful it was that we might only have three years left.
How do you live like that? How do you live every day knowing that your child’s time is running out?
I can’t even answer that question because I never got to find out. Jameson’s fight for his life never lessened; he never got to wake up from the heavy sedation and drug-induced comas. He never got to live out any of those 3-5 years we were supposed to have left. We held our breath for four months, hoping at first for a cure, then for treatment that would at least give us some time, then for a miracle that would at least let us bring him home, even if only for a day or two. It is amazing how fast a person can be broken. How, in less than four months, can you go from thinking 3-5 years sucks to hoping you can just get your child home so he doesn’t have to die in a hospital?
If only I could just go back and take that gift. We would still have two years. Two more years; what a gift that would be.