Thursday, February 21, 2013

Riding the Roller Coaster

We are still holding tight on this roller coaster ride that 2013 is giving us.  We would like to thank everyone who helped us reach out to our Congressman.  A Congressional inquiry was filed on Chris’s behalf a few days ago.  The command has thirty days to provide a response.  Unfortunately, in the consistency with the mediocrity of this command, Chris was told as soon as the Congressional inquiry was received that his life would be made more difficult, and that has begun.  This command has done nothing but make every step of this experience more and more difficult for us.  From questioning every Red Cross message, to requiring me at 8 months pregnant and as a mom of a 24 hour old baby, to request that a surgeon, provide a probability of death for our son.  Chris has been at this command for nearly six months now.  And despite multiple Red Cross messages, emails from doctors and surgeons, and our EFMP paperwork, the command has yet to begin the process or even discuss the possibility of granting Chris a hardship transfer.   It is unfathomable that the United States Marine Corps is inherently unable to send one decorated Marine home to be with his family in times of PROVEN medical hardships.  But it seems that everywhere we turn these days, the people in a position to help are either morally inept or generally apathetic and incompetent.  Our request has not been unreasonable by any means.  There’s not but so much you can do when only bad human beings and “leaders” hold the power.  How long do you fight a fight that you have no chance of winning?
That being said, I refuse to let those human beings who lack any common decency or humanity to change who I am as a person.  As frustrating, infuriating and heartbreaking as this treatment has been, I am choosing to learn from it.  I will work to be kinder to people in general.  To be slower to judge others and more willing to help those in times of need.  I will be appreciative of the blessings and miracles I have been given, and not be so quick to let the hardships and moments of darkness overwhelm me.  It’s amazing how quickly we forget all of the wonderful things in our life when things get difficult.
And speaking of wonderful things in our life….I was amazed at the outpouring of love and support everyone showed by wearing red on Tuesday in honor of Gavin.  For those of you who don’t know, February is heart disease awareness month, and on Gavin’s 4 month “birthday” we asked that people wear red in support of our little man being a congenital heart disease survivor.  It warmed my heart and brought a smile to my face to see all of you supporting our warrior!
Gavin went for his four month well baby check on Tuesday.  His pediatrician said that he looked completely healthy for the first time ever!  He weighed in at 9lbs 13oz, had great color when he’s usually a little dusky, and somehow there was no evidence of a heart murmur which has always been present!  I was standing in the exam room beaming ear to ear with pride in Gavin.  He gets his heart checked out again Monday, but other than that, we only have to go to the doctor every two months as a normal newborn would instead of every two weeks! 
I also feel like I’m finally hitting my stride with working full time, doctors’ appointments, taking care of both kids and handling the ostomy bag.  I am stunned that what was once impossible and overwhelming, has somehow become my every day, manageable norm.  Having a wonderful support network, constant words of encouragement and two kids who inspire me to smile and love with my whole soul are the pieces of strength that get me through the hard times.
Now for some MORE amazing news.  We were told that insurance refused to cover $385,000 of medical expenses at Duke.  (I will leave the healthcare debate alone, but at four months old, Tricare has yet to provide a policy number for Gavin and Medicaid has lost our paperwork three times now.  So thank goodness for private insurance).  I called Duke to ask about setting up a payment plan.  They said our remaining balance was $2,000.  I confirmed our account number and asked about the $385,000 and was told that the only thing owed to Duke was $2k.  So whether the hospital settled with the insurance company, or provided necessary documentation, or a charity organization helped on our behalf, those expenses were somehow covered.  AND, so many of you generously donated to the Give It Forward fund my cousin set up for Gavin, and we were able to cover 50% of that remaining balance on the spot.  By the end of March, we will be debt free at Duke.  How did that even happen? 
So the mental and emotional roller coaster ride is still going strong for us, but today I draw inspiration from my children.  I choose to love like a child does.  Laugh like a child does.  And forgive like a child does.  The world does jade us all, but what happens to us does not need to define us.  We must learn and grow from hardship and strive to become better versions of our current self.   While half a dozen poor leaders have put undue obstacles on our journey, nothing they throw at us can compete with the fact that God has given us a miracle.  So throw us on a roller coaster and keep the obstacles coming.  While difficult and unfair at times, none of it will be strong enough to break our spirit because we have lived through miracles.  And the largest of those miracles happens to be a warrior surrounded by a force of guardian angels that no burden can compete with.  

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.