Grief

 July 8, 2022

Not sure where to start.  Julian and I have been in Kentucky for 5 weeks and every Friday we get the schedule for the following week.  I feel like we are pins and needles waiting for something good to happen.  Ever since Julian's injury, I feel like we are kicking and screaming, or crawling and begging for what we believe is the next best thing.  Nothing about Spinal cord injury has been easy.  First, there aren't many SCI's a year, and not everyone is versed on how to treat.  Yes, neurosurgeons can fix the break and repair the bones that have been compressed.  The harder part of the equation is how much of the spinal cord has been compressed preventing neurotransmission from occuring from the brain to the different parts of the body.  This has been the elusive piece of the pie that for decades they have been trying to figure out how to bridge the connection.  It's been explained as a car accident on a high way, and not being able to pass through.  How do we get these nerves to regernerate and speak to each other.  I have a masters degree in nursing and consider myself pretty smart.  SCI is the most complicated and mind blowing injury.  Julian's legs can move and pull away from painful stiumuli but he is unable to feel it.  How is his brain recognizing something painful and to make your body recoil.  When we touch a hot plate, the nerves in our hand tell our brain its hot and make the hand pull away.  It seems like if there is still that communication happening, why can we make the body voluntarilly move instead of the involuntary movements we see all the time.  

We moved to Kentucky to get Julian in an upper extremity research study.  We had visited in April and were approved and suppose to start June 13th, after graduation.  We had been in contact with the head lead for the project up until the Friday before the start date of Monday.  Par for the course, monday night we received an email stating that the study has been placed on a temporary hold.  It was devastating but still knew that this is the place to be and we will wait it out.  Chris, Alex and Lilly drive back home and leave Julian and I to figure out what to do now.  We ended up getting PT/OT with our insurance fast tracked so we could at least start that the following week.  As Kristen has told me many times, the therapy is like none other so we were happy to see him starting to do things that have not been available to us up to this point.  5 weeks later, we are still waiting on the research part to start back.  The head investagator is no longer working at Lousiville, Luckily, Kristen had a new contact person for us to communicate with.  We are on hold until they give us the word and we have been hoping to get as much PT?OT as possible.  I have been trying to be patient and let this process play out, which is above hard when you have left your husband and 2 other children at home.  This last 10 months has been nothing short of tragic.  The devastation of the initial injury, 3 months of lockdown with covid, and moving home to navigate life has been hard.  Now we are separated again with no information.  Our lives are in other's hands and that's not how I like to live life.  We are the only ones that can fight for ourselves, and can't rely on others to do it.  We have been in contact with new lead and hopefully they see us more than a "participant" in their study but as a family fighting for their oldest child while trying to keep the family intact.  

I don't wish this injury on anyone.  It is cruel, slow to recover, lack of information and funding for research, life altering, family divided to get care when none available, and mounds and mounds of red tape insurance mess to work through while you try to keep his name in people's minds for prayer and support.  I pray the red tape that is blocking Julian to start will soon be lifted and people will know the dedication to this and compassion for what our family is experiencing.  Everything has been put on hold for this and I pray we will see some good results one day.