Rolling Into Summer...Blog entry July 8, 2012

Summer...  July 8, 2012  My Blog for Today.....

Today is Sunday, July 8, 2012.  It's been a hot summer so far...pretty much everywhere I imagine. We were blessed to have the chance to escape to Cape Cod (South Yarmouth) where we stayed at the Red Jacket Resort.  I chose that place, even though it was ALOT out of my budget because it had wheelchair accessibility, close to the ocean, and enough room to care for Daniel while also providing a nice place for Sarah and Thomas.


Thankfully, we returned on June 30 healthy and without any "events" such as vomitting, seizures, fevers, or periods of handbiting and crying.

Daniel resting after a good swim with Mom and Dad

Now comes the task of dealing with real life again for the rest of the summer.  Who doesn't like escaping "real life" for a while.  Real life is the equivalent of worries about Daniel's scoliosis which is worsening, worries about his bones which are demineralized, worries about where the road is taking us next with him.  He had tests done this week, and saw his gastroenterologist...and we are waiting for tests results which will go to the surgeon and the endocrinology team (bone doctors!) for some direction as to our next step.


Yesterday, Daniel cried ALOT and was hand biting.  Looks of pain periodically on his face, and if it trends, I will have to do my due diligence to find out how to help him.

Enjoyed so much the ocean breeze on his face while we took walks. Priceless smiles.

Real life is coping with a house that is falling apart, cars that are on the brink of failure,  a fat folder full of issues to resolve/research/study/call about, continue job searching (which has been SO FRUSTRATING), and pray that somehow some miracle will happen that will put us in a better place financially.  Isn't that always real life.  For so many people....  I know.   But the hard part is raising this child who has so many medical risks and medical problems...and also try to care for Thomas and Sarah.  OH MY GOD...Sarah is going to college next year.

Thomas, Daniel and Sarah

I wake up in anxiety, pray for faith and calm...  and go through my daily routine.    


Back in June I went for an interview at Danbury hospital!  It was GREAT.... for a Patient Access Liaison.... part time.  I had a very good interview, passed all the computer tests, and was told I would have a second interview the first week of July.  I thought, finally...  something to be flexible around the nursing schedule that pays well...  WELL...  that died when I got the canned rejection letter via email on July 3.   Ugh.   I have so many qualifications, an MBA, years of excellent work experience...  but yet everything I attempt hits a wall.  So I have a ten second funeral, and keep on trying.  


All the while, always worrying about Daniel...always managing his medical needs, always worrying about the bills, and daily having that prayer and self talk about BE POSITIVE JULIE, FIND A PLACE WHERE FAITH COMES FIRST, TRUST IN THE LORD.    And...it works, I feel better, and I keep on going going going.

Watching his brother ride a go Kart...probably wishing he could ride too

I know in my heart, somehow, that a miracle will somehow happen.  Someday.  Perhaps it will be a breakthrough in health for Daniel, or perhaps it will be a good job offer for me, or perhaps it will be a wonderful financial gain to support us as we deal with this challenge.  


Like a track and field athlete, we just keep hurdling, vaulting, and continuing to run the marathon. Wondering when the time for rest will finally come.  Believing that all of this is happening for a reason.    Believing, praying, focusing and living with so many unmet needs.

He watches and studies everything around him.  He can not speak, but he uses his eyes to learn about his world.

You can clearly see the leaning from the Scoliosis in this picture. This becomes painful for him.

Getting upset... needed diaper change!

Exhausted, He snuggles in his favorite position...

What really matters most at the end of the day????