"How's Claire?"

I never know quite how to answer this question. And I get asked it a LOT. We're lucky we have so many people concerned about Claire's welfare but the reality of how Claire IS is kind of a bummer.

Claire has progressive, incurable brain disease. Couple key words there. "Progressive" means it's going to get worse, and "incurable" means there is no cure. While there is a treatment for Moyamoya disease - surgery - Claire currently isn't a candidate. The disease is progressing in Claire's middle cerebral artery at the moment, which isn't exactly accessible for surgery. There's really only one of two ways this could go: the disease could begin to progress outward, in which case surgery may eventually be a viable option; or it could progress inward, in which case it will be fatal.

That's it.

We had a pretty good run for a few months. Claire went the entire summer without having a single TIA (that we knew of). We've been told that she has them in her sleep so, the days she didn't wake up all wide-eyed and bushy-tailed as usual, it's possible she had one during the night. But she did not have any observed incidents for three months.

She had one four days ago though. A scary one. One that lasted longer than some of the previous TIAs and one that had me thinking maybe it was time to take that helicopter ride to the big hospital. She came out of it eventually, but she's still not quite back to full Claireness... and maybe she won't ever be.

Because... progressive. Incurable. Not a surgical candidate.

Claire is not going to "get better". In fact, she's going to get worse, and worse yet until hopefully she gets bad enough that surgery would be an option, but not bad enough that she dies. And while I don't spend a lot of time thinking about that - some days it just reaches up and smacks me in the face.

Claire does a wonderful job of living each day in the moment, and as much as possible I try to follow her lead. I don't like to think about the stark realities of what her future holds. 

~~~

How is Claire? Today she is smiling. She is happy. She is alive.

There is no God in this

The text came through at 10:10 this morning. One line: 

“The judge decided to send the kids back” 

I read the notification in disbelief. Clicked through to open the message itself and stared at it, dumbfounded. What. The. Fuck. 

Reunification. It’s a “goal” of the court and child protective services of Michigan. A lofty one. Perhaps it is a good one. The statistics the state provides say that 85% of the families exiting the reunification program are satisfied. I find this hard to believe. I wonder if anyone talked to the kids. Because it seems like no one cares what they have to say in this situation.  

The children the program is tasked with protecting have no voice. 

In two days, a family will be handing back the terribly damaged and traumatized child they have worked their asses off the put back together for the past two years to the very people who damaged and traumatized him, and we are to applaud the success and be satisfied. 

I can’t. I won’t. This is wrong. This happens, over and over again, and it’s WRONG. 

Biology does not a parent make and just because a child shares your DNA doesn’t mean you are qualified or capable of caring for that child. When a mother or father chooses to allow their new love interest to beat and torture their child, to look the other way as their child’s spirit and body is broken because they themselves are broken – their rights should be terminated. Period. There should be no reunification. There isn’t therapy that can fix what should be intrinsic to creating a child – the desire to protect that child with your life. Spiritually. Emotionally. Physically. 

To take this child away from the family who has worked tirelessly to glue the pieces back together to make this child whole again is utter and complete bullshit. It makes me physically ill. I want to scream. I want to throw things. I want to run and grab this child and run away. I think that’s why the courts demand the child be handed over so quickly – so the people with normal, protective instincts don’t have time to cobble together a coherent plan to steal the child away to safety. Because people with normal, protective instincts make the mistake of believing the system will work. 

It doesn’t. 

I am powerless. This family is powerless. This child is powerless. And it sickens me. Children have voices. Why won’t the system listen to them? And when this child ends his life when he is turned over to his abusers, as he has clearly and emotionally stated he would for the two years his foster family has had him, will the system listen to his voice from beyond the grave? Will they care? Or will they still say that statistics prove the majority are satisfied, and those 15 out of 100 children who aren’t really don’t matter. 

This child matters. Every child matters. He wants to be a trauma therapist when he grows up, so he can give the children who bear the same scars he does learn how to get beyond them. I fear he will never be given that chance.  

I, the agnostic, told the person who has loved him for the past two years of his life and did her best to put him back together again, that I would pray for them. I would find a way to send my thoughts to a God I’m not certain I believe in and beg for this child’s protection. Her response? 

“There is no God in this.” 

On that, we can agree.