Friday, August 13, 2010
Blessings during the storm
So last week we found out that Hunter would need a bone marrow transplant. I heard statistics of a 60% survival rate (as opposed to 85-90% for children who didn't need to follow that path), only 5% of children with Hunter's diagnosis end up on that path, and that each of our two children only had a 25% chance of being a match. A lot of numbers to process and a lot of hope was lost. At least for me. For a few days. Last Friday we took both children to the "clinic" to have their blood drawn to see if they were a potential match for Hunter. Ronin was terribly brave, not even flinching during the process. I placed a firm hand on her shoulder and gripped her as if to say, "I'm here and I won't leave you". Then it was Drayken's turn. His screams and yells forced me to go behind the curtain. And I collapsed. Onto my knees. Where I proceeded to beg God to let one of these children match Hunter so that their brother could live. I have never felt so desperate in all of my life. My faith has never been very strong. But I felt that if God does exist and if prayer is real then this is the time to go along with it. Ronin came up behind me and rubbed my back gently and one of the staff members came to my side and said something about never being prepared for something like this. It's true. You go over terrible scenarios in your mind but when your first born, your best friend, your soul mate, the child who owns your heart is laying in a hospital bed with a fatal illness, there is nothing on this planet that can prepare you for that type of heart ache. Nothing.
Turns out that Drayken is a 5 out of 6 match and Ronin is a perfect match. They are retesting just to make sure but it's pretty likely that despite the 25% probability, Ronin is going to be able to give her brother a decent chance at a life. And that means giving me a decent chance at a life. Because I can't even imagine how on earth I could get up in the mornings without him around. It's beyond my ability to imagine that scenario.
We have a lot of hell to go through before we come out on the other end of this. I don't even want to think about my son having three more hospital stays, one of which will be 4-6 weeks long. But I know that when this is all over with, we will celebrate so big and our entire community will celebrate too.
I am so humbled by the number of cards, gifts, facebook comments, calls, texts, etc that we have received. We are truly being physically and spiritually held up right now. Otherwise I'd be a complete mess.
It helps so much to see Hunter. We are able to talk on skype and our visits have been simple yet so precious. Feeling him curled up next to me, scratching his back, ruffling his hair, reading him a book, laughing with him... it all feels so much better than it ever did before. And the thing is, I really appreciated it all along.
I miss our normal days. I miss the homeschool routine we had started. Yesterday would have been our first day of our new routine at the community center: three preschool classes, swimming and lunch, then homeschool PE. We were all looking forward to that. We even already have the pass purchased.
Hunter is talking about how when he comes home he wants to take me out to lunch and he can't wait to get back to his baseball practices. I'm angry.
I guess I should just be thankful for every moment I have with my family. I just desperately want there to be a whole lot more moments with my sweet faced baby boy. This world is a better place with him in it. He completes me.