Grief

 September 19, 2022

Julian and I are settling back into our Frazier routine after going home for Labor Day.  It was bittersweet leaving this last time.  It felt so nice to have a "normal" life and get to be a mom to 3 kids, live in my house, go to the middle school, watch Lilly at gymnastics.  This is a gift to be able to have Julian at Frazier.  He is getting to do therapy that just isn't possible at home.  (Which is still so sad that patients have to travel many hours from home to get quality treatment).  I try to be so positive in all my posts to see what Hope can do and determination, all which we have in spades.  If we were on a hopeless path, being home as 1 family unit is where Julian and I would be.  We would try to Make our "new normal" as Shepherd so much drilled into our head to find.  We have once again chosen the path of trials and tribulations.  It seems to be how Chris and I like to roll.  Why take the easy path when the hard path has much more possibilities.  I sit with Julian day after day for hours on end at therapy.  I see so many families that have come to Louisville from around the United States.  Many have been here for years, all waiting on the hope that Frazier has the potential to give, and afraid to leave too soon before Hope has been delivered.  

  I am constantly amazed my how intricate the nervous system is.  I've always been in awe of what the body is made to do when it comes to childbirth, but the nervous system is an intricate system of tiny nerves that all have to work for the system to be effective.  We are at a facility where the greatest minds in Spinal Cord research are putting in countless hours to help find a cure for this injury.  I will never forget our first meeting here with the research lead, he stated that all we really know at this time is that without therapy, you are guaranteed to get nothing back.  So while they put their minds together, one part of the equation is to keep Julian's body primed for a cure.  Once again we are blessed with amazing OT and PT that love Julian and are trying to keep getting more out of his body.  No where else would Julian be able to receive 2 hours of PT and 2 hours of OT a DAY, 5 days a week.  We are continuing to also have 2 hour research visits a day studying transcutaneous spinal stimulation in conjuction with aggressive therapy.  Julian is trying hard and that's all we can ask of him.  In the meantime, I try to hold together my emotions missing being home and with my family.  Chris and I have been divided in half to tackle all the day to day alone.  I think that's the hardest thing for Chris and I, the loneliness is real and heartbreaking.  Thank goodness for Facetime.  I never dreamed that one day we would have to use it to help with homework, say goodnight, solve teenage problems, and still let your kids know you love them with all your heart even though you are away.  We've also learned that this is going to be a long haul and we primarily have ourselves to get through the day to day.  Chronic illnesses lose attention after time.  Everyone has families to take care of and can't devote the rest of their life to helping us get by day to day.  So while Chris tries to work full time in maintaining our family business while I've had to take a step back from work to care for Julian, he and i also try to fit in the "normal" things like. practices, doctor visits, orthodontist visits, etc.  There are no easy answers to our problems or quick fixes.  We are also only human and it is hard not to let sadness crepe in to remind us of what all has been lost.  Togetherness is the most important thing lost.  Watching others do things with their families is also hard.  There is no vacations or "kid free" weekends in our near future.  Right now, we are still in survival mode, still just trying to keep our heads above water.  We have learned that this has many different stages but all just as real.  Initially, survival meant Julian's survival from the accident.  Now, survival is to make it through this separation and continued heartache in 1 piece and as a family unit.  None of the cliche sayings make us feel better.  The you won't get more than you can handle or there will be a purpose for this in the future.   So as we move forward, I pray for the Hope in science to keep navigating and pushing the boundaries.  I pray for my family to weather this and for us to get answers on how to proceed.  After the study is finished we will then be put in another position to decide what is best for Julian.  With Julian gaining small strides, it will make it difficult to pull him from this facility to go back home where there nothing comparable to maintain what he has worked so hard for.  It would be like all the sacrifices were for nothing if we can not help him stay in a position to maintain.  If Julian stays, then we will have to seriously think of a long term solution that balances all my children's needs.  What that looks like we don't know and we are just trying to make it month by month.  

We are looking forward to this coming weekend when Chris and the twins come to us this time for a visit. I will have happier things hopefully to report soon.  It's just impossible not to have some ups and downs in this process.  I pray more ups in the future.  But I will take any little smile from Julian I can get to keep me looking forward instead of backwards.