Powers

We have had our appointment with an attorney to begin the process to make sure that Libby is safe if anything happens to me and to be able to continue to take care of her. She is 6 months away from being 18. She has a bio-donor out there who has refused to see her or speak to me about her.   In the event of my  demise HE has more rights to Libby than Rachael or Mariah or anyone.  He has refused.   His loss. 

So we are going to push for Power of Attorneys and are setting up our own wills. If something happens, I have to know that Libby is going to be cared for in her home by the people who have raised her.  (I continue to pray that Mariah will have all the chances in the world to have her own life).  These are hard conversations to have.  Down to what happens if we both die?  Well, we set up a separate trust just for Libby, the girl who will be an adult. The girl who could have been given money to help with her medical and personal costs if

I'm gone.  I can't wait to have something in "power" like this.  I am pushing through this process and will share what I learn as I learn it.   

Here's some thing's to talk about: 

1. Whose name(s) is your real property in?  If it is in one name and you're married or a parent/child then that property may be headed to probate. 

2. Whose names are the bank accounts in? Is there a right if survivorship in place on those accounts?

3. Do you have a list of names who will take care of your kid(s) if something happens?  This is right of succession?

4. If you divorce (the statistics for parents of Special Needs children going through divorces are terrifying) who takes care of the kid(s)?  Who handles the medical coverage and decision making?  

5. Who is in the Right of Survivorship? 

6. Who would be the guardian of the person and/or the estate? This includes the guardian of the trust. 

7. Who would be the Executor? 

You can state in your will that you want Murphy, the dog,to have a bath every month and to be brushed every week, but that's not legally binding.  

Please start thinking.  It's not morbid. It's about working with the Powers to make sure that your loved ones continue to feel your love.

What's that smell?

How many times in the past few years have I thought that I was broken beyond repair?  That there was nothing let inside of me that would keep me moving forward.  Recently, while sitting in one waiting room, or another, praying and trying to breathe, I noticed a "smell".  

(I associate smells with emotions.  Always.  The pairings can change.)

Not a real smell.  Not like fresh skunk, feed yards, Lysol, cheap candles or teenage funk, but a definate smell. This was familiar and yet unrecognizable.  This smell is one that clings to you. Wants to hang around and become a part of you. 

Looking around the waiting room I see the familiar look in the eyes around me of worry, fear, pain and hope.  These people are here because they have a child who is being operated on.  I've shared this look with them in many holding areas, where feeling your own fear and hope has to take precedence over empathy. It's not just the look we share, it's a smell. 

Desperation smells funny. Not bad. Not good. But for sure, it is detectable to me. I've been eating "eau du desperacion" for too long.  Desperate to get through. Desperate to find answers. Desperate to accept answers and results.   Desperate to keep her happy. And alive. And comfortable. Desperate to comfort and guide Mariah and protect the rest of our loved ones.  Desperate to be able to continue to teach.   And the double dip of stench- desperate to not seem desperate and smell like it. 

Instead of hiding my desperation, I think I should wear it like the crown of victory.   In order to even acknowledge this feeling, I have to admit that there are real, painful, irreversable possibilities in Libby's life.  Smell it? I do.  

Instead if hiding the broken-ness I think I'll wear them with an evening gown and put my hair up.   

Being desperate also means that real decisions are made. Hopefully, these decisions are thought through.  Hopefully,  the protection of fools will hold fast. It was because of that reek I've been wearing that Libby is now a battery powered super teen.    

How long until I know that I made the right choice? I have no real, factual idea, but I do know that it'll most likely be the day I get this damn smell off of me.  

Desperation smells funny and I believe I'm done wearing it. 

Ten days past initial programming and most stitches are healed.  

What does patience smell like?   And, more importantly, what about hope

A blog shared by Elizabeth Gilbert, author of "Eat, Pray, Love".   http://www.elephantjournal.com/2012/06/kintsugi-as-yoga-filling-the-cracks-with-gold-zo-newell/ 

Instead of hiding my brokenness, maybe I'll try to share it more. Maybe I'll fill some of the cracks in with gold-