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.  

Saturday, February 9, 2013

Guardian Angels

I am beyond thrilled to share that Gavin has had two GREAT appointments lately!  His surgeon was very happy with how Gavin's stoma looks and doesn't need to see him back for six months.  And his pediatrician is thrilled that he is putting on weight and developmentally on track despite all of his setbacks.  This boy is a fighter and he certainly inspires me every day.

Gavin has finally started cooing some.  He has the voice of an angel.  He is becoming much more active and watching him grow is so empowering.  There are still difficult days.  Ones where negativity becomes all consuming.  But we survive those days and wake up to start a new day with a new energy.  There's no way to remain positive at all times.  It feels like we are running a race.  A race where spectators are lined all along the course, and as we get tired or hit our breaking point, voices from the crowd urge us to keep push through.  And that motivation that each of you has given us has helped us through those tough times when another step seemed impossible. 

Someone asked me the other day if God has revealed his purpose in giving me Gavin.  I still don't have an answer for that, but here's what I have learned.  I have struggled in my relationship with God for years.  Not sure if I really believed in him myself, or if I believed because I was raised to believe.   People have often said that you have to have faith.  Well, it's hard to maintain faith in people and in God when you live in a such a jaded world.  I am a person that needs to see it to believe it.  But once you see a miracle....experience a miracle....LIVE a have seen it and you can't help but believe it.

There are times in life when coincidences occur.  And then there are times that you reflect on your journey and realize that your life was not a series of circumstances, but a beautiful, messy plan that brings you to exactly where you are meant to be. 

Is it a coincidence that out of the four colleges I had to choose from, that I chose to go to Charlotte?  While at Charlotte, that I was introduced to Krav Maga and found an instructor who, to this day, has been one of the most inspirational people that I have ever met?  He gave me the quote, "If you fall down seven times, get up eight."  He taught me that the fight's not over until you're dead.  That the spirit of a warrior is equally, if not more important, than the skill.  Is it a coincidence, that nearly ten years ago, these lessons were being instilled in me?  Or that I decided to join the Marine Corps on a whim?  That some of the women I met in the Marines, continue to inspire me and give me examples of strength every day.  That being in the Marine Corps allowed me to cross paths with Chris who is my exact balance in life.  A man who has a heart to love unconditionally, a giving spirit and patience that rarely runs out.  Chris has been through more pain and struggle in the past ten years than one person should.  But you would never know it.  He is humble man, persistently optimistic and the best father a woman could want for her children.  (After my father, of course :) )

My father decided to change his career course several years ago.  While a struggle for him at the time, it put him in a position to have the flexibility with his current job to be here when we needed him.  Is it a coincidence that my dad is in a medical career field, which made me feel more comfortable leaving the hospital with Gavin knowing I had my dad's medical experience to fall back on for the first few days out of the hospital?  My mom was affected by lay-offs.  And she chose a direction in her work to have flexibility to be with me when needed as well.  She has been able to watch Lorelai while we spent months at the hospital with Gavin.  And, (by coincidence?) I grew up in the same town as my grandparents.  At times when my mom could not watch Lorelai, my grandparents were easily able to step in and help out.  I had to travel for work two weeks ago, and with Chris gone I had no one to watch Lorelai and Gavin.  Is it a coincidence that my parents are in a position to drop everything and spend a week watching the kids at my house?  Or that my mom is always around to spend the night at the hospital when fatigue has broken me down? 

Is it a coincidence that two years ago, Chris had a cousin who spent months in the NICU with her son?  That she was able to be a source of support and help provide encouragement on the harder days?  That Chris and I have settled in an area where we are close to both of our families?  And that his family has been able to meet me in the emergency room with Gavin when I was on my own, or that his aunt has been able to care for Gavin in our home four days a week while he cannot be around others?  Is it a coincidence that my grandmother somehow always has a card of encouragement in my mailbox the exact day that I need it?  Or that a phrase from my other grandmother sticks in my head on the bad days?  When my aunt was in the hospital recovering from brain surgery, I held her hand and told her it was ok.  My grandma said, "No it's not, but that's ok too."  That comment holds so much power for me these days.

Is it a coincidence that my sister-in-law only lived about an hour from Duke, and found herself in a position to be able to drop everything and be with me through Gavin's delivery?  Or that she made it there only 20 minutes before he was born?  And that she happens to be a Godly woman who gives me encouragement when I need it?  Or that my brother sometimes works at Duke?  So he was able to stop by and see us and Gavin in the ICU while he was at work.  Is it a coincidence that a photographer, now friend, that I found when we first moved here, happened to know someone with a child with Down Syndrome?  And that person happened to be a source of advice and strength that truly understood what we were facing?  That she recommended we go to Duke?  Where every parent in the cardiac ICU had strong, unshakeable faith in God.  That Chris's deployment strongly affected our decision to deliver at Duke so that I could be close to my family?  That I work for a company that has been beyond measure in the support they have given me as we have endured Gavin's battles so that I have not had to worry about job security on top of everything else? 

Or how about the fact, that while I was on travel for work, I met someone who has a sister with down syndrome?  I started telling him about Gavin, and he said "Wow.  You're sitting here helping us like nothing is going you haven't been through all of that.  You must be a warrior."....someone who has never heard Gavin's story and has no idea what the word warrior means to us.  And is it a coincidence, that the only name Chris and I could agree on was Gavin?  We didn't even know that it meant "white hawk of battle" until weeks after we picked it.  Or that his middle name, which is my father and grandfather's name, means "ruler of an army."  We didn't pay any attention to what his name meant when we picked it, but is it a coincidence that we gave him a warrior's name?

And the answer that I have found to all of those questions, is a resounding no.  None of it has been a coincidence.  Every step, turn, stumble, success, and failure on my LIFE journey has prepared me for exactly where I am today.  Surrounded by friends and family who have been teachers, coaches, mentors and cheerleaders.  Gavin is our GOD GIVEN miracle.  We were encouraged to terminate the pregnancy.  We were told it would be a medical miracle to ever bring him home from the hospital.  We were prepared for him not to survive his open heart procedure.  We watched as the blue code cart was rushed to his bedside as he crashed in the ICU.  We had a huge sigh of relief as he came home from the hospital knowing that his fighting was done.  Only to find out that part of his colon was dead and required surgical intervention. 

But now have breathed a second sigh of relief.  Gavin IS home.  He IS gaining weight.  He IS developing normally.  He IS as healthy as he can be right now.  He IS fighting back.  And he IS winning.  Because God gave Chris and I battles to mold us into strong people, before we ever knew of each other.  God prepared us with strength for this journey and he molded Gavin into a fighter of epic proportions.  Gavin has survived battles that no one thought possible.  And he has survived them as a physically stronger person than he was before he entered them.  He is such an inspiration! 

And every single one of you who have helped us on this journey, who have prayed time and time again for Gavin to have strength to make it through, who have sent messages or provided dinner, or who have sat with us through surgeries, visited us in the hospital, pushed us through fear.....each and every one of you are a guardian angel sent by God to help us through our journey.  We are certainly blessed by all of you.

So through these past few months, I have learned without a doubt, that God is real.  I have seen his miracles.  And his guardian angels...