Grief

 In preparation for our 1 year anniversary of Julian's accident:

August 21st will probably be the anniversary date that out of all the dates in my head, I will never forget.  I’ve been dreading this day for many weeks.  I’ve watched how other SCI families have handled their first anniversary with perspectives I hope I can have when it’s our turn.  My dear friend Kristen is calling it a Celebration of Life, because we saw first hand how fast our boys lives could have been taken away.  I am beyond thankful that Julian is still here and mentally the exact same Julian as before the accident.  That is the positive.  The realist in me sees how life will forever be changed.  Life will never be as it was before that night.  Chris and I are continuing to raise our children in 2 different states.  We are seeking the best possible treatments for SCI we can find.  I am using my medical background to scrutinize everything I read and find that could help.  Chris is being his “salesman” mind to search and find the right people to put in our path so that the minute something promising comes through we can jump in line and raise our hand to be part of the trials.  I have spent my entire adult life in medicine.  I started my career as a nurse, and went back to school to get my nurse practitioner degree.  I have taught at the best schools to share my knowledge with the next nurses to enter the field.  I have worked bedside for 20 years and have seen how medicine has evolved and changed over that time.  We learn from the past and change the way we treat illnesses with the newest guidelines and therapies.  What continues to shock me is that Spinal cord injury treatment and perception of the outcome hasn’t changed.  In medical school and nursing school, SCI is declared to have “no cure”.  That the cord is incapable of healing and the patients will never regain function or ever walk again.  I have met tons of people and I’m sure their stories are the same as ours.  It was documented in Julian’s chart the night in the ER that “surgery will repair the fracture, but will not change the outcome for Julian and no improvement will occur because of the surgery.”  The shaking of the head because it was the end of a very young and fruitful life to be had of a 17 year old.  The look of pity.  The advise was to join a support group.  There was no information given from the neurosurgeon that operated on Julian of the new advances in SCI that are taking place and guidance of where to go for therapy.  Looking back a year later, I am shocked at how little the medical community invests in knowlegde about this injury and the research that is being done to combat it.  All we heard was you will develop your “new normal” with what you have been given.  No encouragement to keep fighting for more.  ALL the information we have gathered since last year has been through a huge network of previous injured patients and families that haven’t given up yet.  It is from parents that are fighting for their family members.  It is a handful of neurosurgeons, scientists, researchers, medical companies that are trying to be there first to come out with a viable option to increase the quality of living of these unfortunate soles that fate intervened in a mere second.  Chris just went to a rare conference with a meeting of the minds for research into treatment options for SCI.  He met many, including other moms and dads that are standing up for a community of people that need our advocating.  Chris said it was crazy how the mom looked just like me or Kristen, with the look in her eyes of hurt and determination.   Much of the medical community still sees the pre-determined outcomes based on old science.  Thank goodness there are people out there that believe this way of thinking is unacceptable.   Researchers in the neuroscience field are working hard to make the “impossible” possible.  The path of less resistance is to accept this as Julian’s fate and we find a “new normal” as the medical community recommends and find a new way of life.  We feel like that is giving up and not trying to make Julian’s life more meaningful.  Some quotes recently that have stuck a cord:

“It has been said, “time heals all wounds”.  I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.”  Rose Kennedy

Another referenced is that we need to stop associating strength with someone’s ability to smile through tears and suffer in silence.  Strength is being brave enough to talk about what’s hurting most on the inside.  

I’ve tried to share our story since Julian’s injury.  At first, I wanted to flood him with prayers for healing.  If prayers alone could make him whole again, I wanted the world to know Julian and his suffering.  I had no idea the depths of people Julian’s story would reach or touch.  Julian is such a sweet boy with the biggest heart imaginable.  He had no idea the amount of people that he had touched their life in some way with his gentle spirit and big heart.  Being new to a community was not easy, but he quickly found his people that would embrass him with love and prayers.  We were quickly overwhelmed with the outpouring of love for Julian.  Words of thanks will never be enough to tell our friends and family how much it has meant to us over the past year.  

At Shepherd, it was told that the outcomes for spinal cord injuries are up to the Lord, the cord, and what we do about it.  We have prayed and sought the lord for a miracle in healing.  The cord is it’s own path of how it heals.  And We are doing absolutely  everything we can to do everything in our power to help the cord heal.  To go through something like this. It really tests you to see what you are made for.  Julian has had to dig deep to really push himself to work his hardest and not give up.  I am being used for my medical knowledge to keep Julian whole on that front, and Chris is using his life as a salesman to advocate for Julian and many others for a cure, in whatever that may look like in the future.  Being in Louisville, is no doubt where the great minds are coming together to think of new ways to navigate the nervous system, which is extremely complex.  

I know others have heard the same thing in the past that we are on the brink of new discoveries, but I have to believe that this is the NOW.   Now is the time for bigger and better things to happen and touch lives that in an instant were forever changed.  

We still drive down the road and pass the tree where Julian had his accident and question the severity of the injury.  He was not going fast, just a dark and rainy night and Julian swerving to miss an oncoming car.  This injury was his ONLY injury that night.  Why this?  In the early days after when Julian’s heart was broken for what had happened, and he wished for a different outcome (both ways), he said he had a dream that he was going to be tested by God.  This is some test and Julian’s past year shows he is up for the challenge.  He recovered from his initial injury, weened from his trach, was able to eat and drink by mouth and didn’t need his feeding tube.  Never needed his diaphragm pacer to help him breathe if he could not sustain on his own, conquered how to drive his wheel chair with a sip and puff mechanism, went back to school, took all his classes with an iPad and special bluetooth glasses that he could click with his mouth and made all As, and managed to still graduate with his friends on time.   Then he and I moved to another state to put him in the hands of the scientist on the forefront of this injury.  All of this in 1 year.  I pray that year 2 holds as many achievements as year 1.  

I would love to find a way to make this date meaningful and not one full of dread.  I haven’t figured out what that is yet, but somehow I would like to do something meaningful.  After the twins were born, March of Dimes became a passion of mine.  I don’t know why we were chosen by God to be the champions of 2 causes but now Spinal cord Injury research and advocacy is added to the list.