WHAT????

OKAY... I'm sorry, but I MUST rant for a moment here. Mostly, I do it on Facebook, but I would never want Ollie's mom to see it there, because the last thing I want to do is hurt her feelings... A long time ago (18 months, maybe more?) someone created a page on Facebook named "Prayers for Oliver P." Well, people get on there and send thoughts and encouragement, etc. Great!

Well, the last couple of days, this guy gets on there, (maybe it's a woman, I can't remember) and tells Stacy that she needs to call him right away. A few hours later, this big post, the gist of which is, "Stacy, I really feel like I need to tell you that Oliver should have another MRI." Um, WHAT? Who the fuck are YOU???? You aren't that kid's father, nor are you married to Stacy, so -and excuse my SpongeBob sentence enhancer here, but-SHUT THE FUCK UP. YOU do NOT get to tell someone what to do with their kid, EVER. God doesn't give you revelation for someone else's kid/family. A$$HOLE. I am really angry about this (can you tell?) This child is dying. He can't really even get out of bed, he uses a urinal to pee, but yeah, let's load him up in the car and drive 90 minutes to Iowa City. Who the hell are YOU???

Which brings me to the next issue... I was hoping that ranting about dumbass up there would make me feel better, but it hasn't so much... BUT I will try to be sensitive... In fact I should have been more sensitive with that guy too, I don't know who he is, so...

I read this morning a post that said, "Oliver, hold on to all our prayers." OK, I understand the sentiment behind this, but it's extremely selfish. Oliver has told both his parents that he is ready to die. He is miserable in his body that is failing him. He has a constant headache. He is bloated from constant steroid use. But yeah, let's guilt him into holding on because WE don't want him to die.

Let's be clear about this. I don't want Oliver to die. I never have. And a miracle could still happen. The Lord could raise him after he is dead if that was His plan for Oliver. But I do not know God's will. The ONLY thing I can do is pray that it is His will that is done, not mine. And my prayer is that God's will be done, and if it is that Oliver go home to Him, I pray that it is with the least possible amount of suffering for Oliver. That sweet brave little rock star has been through SO much already. Ollie, you are, and always will be, my hero.

Life is Fragile...

I am amazed sometimes how quickly I can forget how fragile life can be. How excruciatingly delicate. On March 12, 2011, I participated in a fundraiser for St. Baldricks, an organization which raises money for kids' cancer research. When I say I participated, I mean that I had my hair, which is naturally curly, and was almost to the middle of my back in length at the longest layer, shaved off with clippers. What was long enough, we sent to Locks of Love, so it could be made into wigs for cancer patients.

The reason I participated in this event was because my friend Stacy has a son. Oliver. Her oldest child. Oliver was diagnosed two days before Christmas 2010 with DIPG, a rare and aggressive type of brain tumor that is inoperable. And incurable. When he was diagnosed, they told Stacy and Ed that they could expect approximately 6-9 months if they chose no treatment, and 9-18 if they chose to do some treatments that would extend his life. Of course, they chose the treatment.

On November 1st of 2011, Ed and Stacy took Oliver to University of Iowa Hospitals and Clinics, where he had an MRI. The results showed that the tumor had resumed growth. Hospice care was arranged. And Oliver was given 6-8 weeks to live the remainder of just over a decade of life. It's now been 14+ weeks. I can't help but smile that Oliver has continued to defy the odds of what he's "supposed" to do. What an amazing little fighter! And he's always so upbeat.

But the last two days have begun a rapid decline. Oliver told his mom and dad he's just ready to die. He understands more than any 10 1/2 year old ever should have to about what is happening to him and his body. And he is cognizant of everything that is going on around him. There is just no control of the body that is failing him.

As a mother who lost a child suddenly, I used to wonder if it would be different for me if I'd had some warning, some time to prepare... and now I know. It would have been absolute hell.

I just cannot even conceive of having to watch helplessly while my child slowly declined. It breaks my heart. Those parents are my heroes. And Oliver is my hero. Rock on, buddy. Rock on.