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????

Hayrides, Auditions,Pumpkins and Offensive tackle

Pumpkins Ready!

It is Monday October 17, 2011.  The weekend was the epitome of Fall in New England with hot chocolate morning football games.  Mums and pumpkin flavored everything. Leaves of all colors and a wind blowing to add a chill...but a warm sun to toast your cheeks.

Pumpkins growing....

I only watch but I have a great time....

Nurse Marques came out to watch the game..Sarah in the background drinking hot chocolate

Other disabled special forces friends wait for a HayRide...

"Lean On Me..."

Hold on its gonna get rough!

Whats Fall without Mums?  Wish I had some too...  :(

Our Cheering Section... Dave, Daniel, Sarah, Me...John and Marques,

Cheerleaders

My expression is for the gross MUDDY SWAMPY part of the ride

Thomas had his football game...  and then I took the kids along with our New Nurse DAVE...  to Paproski's Farm for an old fashioned bumpy muddy hay bale under your butt hayride.

Pumpkin Launcher

Daniel was hard to hold this year with his crooked spine it was all I could do to keep him in a good position.


There will  be a time when I can no longer do these types of things.  I think about the spinal surgery often..and wonder how long it will be until he is so crooked that he needs surgery.  


Sarah... ..auditioned this weekend for a Production of Oliver.  She is so talented, and I do try to spread myself out to try to get everyone what they need.


I saw some amazing clouds this morning that looked like Angels.


I prayed that God would provide for our needs...because they are many.  And I live in fear, fear for Daniel's health, fear for security...  but the realization comes that there is no security.  So I tell myself...put aside those piles and laugh.  Sing.  Look at the beauty.  Giggle and tickle and share joy.


There are people in my life who do not exhibit joy. Or gratitude...  So I pray for them.  


Anyhow...  my priority is keeping my house intact, keeping Daniel safe and warm and doing everything I possibly can for all three of my children.  


The biggest question remains...  What will they be for Halloween.....

(If anyone would like to Donate on Daniels behalf there is a paypal button on this blog)   we would be very grateful  :)

Giving Thanks to People Who have helped us

In my work as Daniel's advocate, and often time... fundraiser/resource helper...  or survivalist...whatever that title is...

We have been blessed over the years with help, both financially and supportive from so many people..

The Scotty Fund - An incredible gift to this community...and the help they give to families with disabled or chronically ill children.

The Win Win Foundation - No longer in existence, but a strong part of our past through all of the friends we made there...and the respite nursing they provided allowed us, back then, to have a break and enjoy a night out once in a while..  among other financial help...  But the people we met there continue to be our friends to this day.

The Molly Ann Tango Foundation - Another amazing foundation that has helped us with Daniel's needs, and even support for Mom's at an annual Mother's day luncheon fundraiser...

Save a Kid Foundation - An organization that reached out and helped us significantly with Daniel's renovations and needs.  They are also helping us presently to acquire a special needs Trike/bike for Daniel.

Make A wish Foundation - in 2004 they granted a wish for Daniel and purchased a swing and playscape for Daniel to be able to swing and be around his siblings as they play.

Dream Come True Connecticut - In 2010 we were granted a wish to take Daniel to swim with Dolphins...it was the trip of a life time.


There are people in this world who genuinely care...who know how hard the struggle is....and want to support families like ours.   Private and public people who have just met us and wanted to help.  I can't say thank you enough in this life time.....

But the journey continues....and I am working so very hard to pay bills and keep the house and get wood for the winter and the very basics of life.   I want a job too...  but everytime I try I am rejected because I've been a "Stay home Mom" if you would call it that.    ANY HOW....  advocating for a severely disabled child... A FULL TIME JOB people  Totally.  

The end of the year is always the hardest for us...  there is never enough to do everything that everyone needs so we cut back, and cut back, and cut back...     I keep praying that by some miracle I will come across a grant or a foundation that will help us.  Social Security Disability?  nope...they reject us.    I just need help, and I ask God every day if its wrong or right to do so....but then I look at Daniel and he looks at me.  It is, for now, the way it has to be.

Peace All.