Make This Situation Go Away.

I have so much to write, but I don’t have the compelling force to write it. 

Avery’s geneticist appointment went very well, but not excellently.  We were hoping to leave with a confirmed clinical diagnosis in hand and tell CPS that it was over, that we had proof she wasn’t abused.  Instead we left in a state of fear and panic. 

Avery’s geneticist felt pretty strongly that Osteogenesis Imperfecta is the cause of her fractures, as she has absolutely no signs of trauma or abuse.  When asked if he was questioned in a court room what he would say, he would say that she has it.  But, even with that, he wasn’t comfortable enough to give her the diagnosis without the blood work coming back positive.

The problem is, the blood work for OI is very inconclusive when negative.  The positives are positive, the negatives mean that the gene may not have been found yet, or that it is actually negative.  That’s where a clinical diagnosis is important to have. 

There are no signs of abuse.  There are more signs that point to a genetic or medical issue than anything else. 

This situation is just spiraling out of control.  It’s literally just spinning and spinning out of control.  I don’t know how to stop things from happening.  I don’t know how to protect my innocent child from a system that is hell bent on destroying her family.  I don’t know how to stop this from happening right around us.  It’s impossible to even think about without falling apart. 

And then, of course, on the sideline are all the people shouting “Child abuser!” without any knowledge of the situation at home.  It’s so easy to assume that people are guilty and then force them to prove their innocence.  How do you PROVE you aren’t a child abuser?  Your actions?  Your words?  Your friends?

All of those should have already proven that we are a loving, happy family.  Apparently though, that isn’t the case.

I have spent more time in the past month praying for a  solution than I have spent praying in my life, that’s for sure.  I know that there has to be someone, somewhere who can help us.  I just don’t know how to find them fast enough.

Monday, Avery’s blood results will be back in.  I can’t even begin to tell how how scared I am.  If the results come back “negative” (inconclusive) then we are going to be fighting for our family, once again, despite having done everything possible to make this situation go away.

I have called to make an appointment with a psychologist to evaluate my mental health.  I have contacted every geneticist, Dr, lawyer I could find.  I have talked to so many families with OI that it’s unreal.  I have heard more stories of heart-break and fear than I dare express.  This situation is just horrible. 

Avery is peacefully sleeping on my chest.  Sweating, of course, but sleeping – peacefully.  I can’t help but think if this is the last time that she is going to sleep on me.  If tomorrow the system set in place to protect children will rip her away from her loving, caring family. 

This hurts so badly. 

People always ask me how I’m holding it all together.  The answer is, I’m not.  I don’t walk around in public sobbing (at least not very often, although it has happened) but I’m not sitting at home laughing the days away and having a good cheery old time.  I am actively trying to protect my children from knowing the nightmares that await outside our home.  I am trying to be a strong, healthy and supportive mother – despite my unrest and fear.  I’m not holding it all together.  At night, I can’t sleep.  My brain is racing with things to try the next day and ways to get in touch with another Doctor.  My mind thinks of all the stories I’ve read and the families that were torn apart for months and years before they were reunited, despite there being no abuse.  My heart is aching and pounding in fear of the unknown.  I am definitely not holding it together as everyone seems to think.  I just don’t show how much I’m suffering in the public eye.  That’s just who I am.  That’s who I’ve always been.

I love my family so much.  I want to protect them from this.  I can’t, though.  I can’t protect her or her sisters.