Monday, April 23, 2012

BONES and a Pile of challenge

The latest news regarding Daniel's spinal fusion is a problem that has come up...with his bones.  I received a call from Endocrinology telling me that his bone density tests are poor, and that his phosphates in the bones are low.  He needs to have a series of tests, and then some kind of therapy for the bones before we can even schedule his scoliosis surgery.

Will there ever be a time in my life when things are not so complicated?  It just seems like one issue blends with another issue...then something else springs up...and I am chasing my tail in circles like a crazed dog!

This week was April Vacation and Daniel's Spring allergies went through the roof!  Itchy eyes, runny nose...just miserable.  He needs that like another hole in the head. But one more thing to manage is just one more thing to manage.

As I reflect now on what is coming up it seems daunting.  The process of helping Daniel to gain weight, to strengthen his little bones, to keep his allergies in check, to prevent him from aspirating saliva, and on and on and on.  

And yes...I have two other children who need me as much as any child needs their Mom. But I have an unequal attention span....  call it... another challenge to add to the pile.

Hoping that the "GoFundMe" account will start helping with fund raising...its so hard for me not being able to work.  I feel like I'm losing my flipping mind trying to pay all the bills...and budget for the unknown crazy future.  I keep praying that somehow we will be provided for...so that we can focus on the pile of challenges.  But the financial crap just heaps right up on top...pressing down...  unrelenting.

And I think again to Daniel's skinny little legs and arms...wondering what we will do if he is too weak for his surgery.  That is a reality I can't quite sink my teeth into....and my head is still spinning the Vertigo.

Please, if you read this, say a little prayer for my sweet little 14 year old angel that his body will be strong enough to make it through spinal surgery.....even to make it TO spinal surgery.

*****   On the subway, when I took Sarah and Thomas into the city last Friday....a man and his friend were singing Bob Marley... "No woman, no cry"... " everythings gonna be alright.  everythings gonna be alright"  and I've been keeping that tune going in my tired head.

Wednesday, April 11, 2012

Vertigo

Currently waiting to hear back from the surgeon regarding the date of Daniel's much anticipated spinal fusion surgery.  Not surprisingly, right after the meeting with the surgeon I felt tremendous stress and anxiety. I'm terrified, because its their job to lay it on the line... here are the risks...  1.) We could lose him.   OK...that's enough for me.  You got me scared. But alternatively, if we don't do the surgery, his lifespan will be shortened. OK. now what choice do I have?  Let's put it into God's hands and keep praying.

Right now I'm suffering from what, apparently, is called "Vertigo"...and I am so dizzy I can't function like a normal human for a few days.  I feel like someone just spun me in a thousand circles....the room spins....and I end up feeling nauseous.  Worrying.  Wondering.  

So many needs.  So many pressures....  my world is spinning....literally.   The kindness of others and the support of community has kept my hopes high that this too shall pass.  There will come a day again when things make sense and there is time for relaxing.   I had a dream last night that we were in Florida....at Lovers Key...collecting shells along the shore....warm sun and nothing else but the smell of the ocean and the sand in our toes.

We have a place to go, a wonderful place...a family member has a wonderful condo and her generous heart lets us use it.  IF we can get there.  And I just wish there was a way to get Daniel down there for one last trip before his surgery.  One last trip to swim and laugh in the warm Florida water.  One last escape from the reality of ALL the crazy pressure that has started to degenerate my health.  Warm sun and just "whatever"....  

Maybe a miracle will happen.  Maybe somehow we will find a way to get down there with Daniel....  Maybe then we will be more emotionally ready to face the risks of this very tricky surgery.

As I sit here in my state of vertigo and feelings of motion sickness....I can't help but wish that they were real motion sickness...on a plane...headed for Fort Myers Airport.