"I'm good"

 March 24, 2023


I knew posting frequently wouldn't work.  Sometimes it feels good to get my thoughts on paper just so I share them with someone, even if no one reads it.  


"I'm good"- I say this so much to reassure others that I'm ok, because I know this is what people want to hear.  We have so much to worry over, adding me to the list doesn't seem productive but in no way am " I good".  I know life is still crazy right now.  Chris and I are still juggling between 2 different states with really just each other to make sure everything is taken care of with work and the kids.  Everyone has busy lives and stepping in forever to take over ours isn't something that we ever expected or thought would happen.   I worry daily if what we are doing is the right plan.  Are we doing enough for Julian?  Are we meeting Alex and Lilly's needs as children?  Did their life also stop on August 21, 2021?  Do they know how much we love them even though they have had to grow up sooooo much in the last year.   I may not know the answers to these questions for some time but feel like I'm constantly being pulled in so many directions and don't feel like either is adequate.  Leaving home gets harder and harder each time, but without a shadow of a doubt believe that the therapy Julian gets is worthwhile.  It is so sad that there is so few facilities dedicated to spinal cord injury in the United States to force families to separate in the most tragic of moments.  The one thing that I have been a support of since this happened was the PTs and OTs that have come in our life.  The ones versed in neuro conditions have been life savers.  They know their stuff and have done a good job in teaching me things I can do to help.  For now, the plan is to continue to house hop until closer to the end of the year.   And then I have no idea what is next.  That stresses me daily because I know I'm taking him away from the people that know to a rehab in Columbia that is not set up to truly do the PT that will benefit him long term.  The "walking" Julian does at Frazier isn't necessarily with the goal of walking.  It's the other 10 things that has done so much.  Able to just tolerate sitting straight up, and standing, the increased blood flow through lower extremities, the good it does for his blood pressure, the good it does for his self esteem to stand again, the weight bearing that helps with bone denisity.  This is something that I know we will not get when we move back home.  


I read quotes on grief all the time.  Julian survived the crash in August, but his body did not.  I feel like I still mourn that just like a death.  Life as we knew before that night does not exist. We are left with fragments that we are trying to piece together to keep us all whole.   We are not creating a "new normal", because the life we have been left with is anywhere but normal.  We have all been changed in many ways.  

For Me my grief looks like feeling good one minute and falling to pieces the next (which I do alone so that I don't burden others with this).  I feel like I avoid things and people that remind us of our loss, and loss isn't in the physical way but a greater idea of loss.  Moving from anger and depression, I haven't reached the acceptance stage of grief which is the goal of grief stages.  Losing interest in activities,  even when I'm home, my circle is very small.  I have some friends that don't accept my "I'm good" and really ask how I'm doing.  The ones that really try to understand what me, Julian, and my family are going through.  It's hard though, because I would not fully be able to comprehend this unless we were the unlucky ones to personally experience the cruel world of SCI.  I feel like there is a time frame for which people expect me to move through this process and get to the stage of acceptance.  I constantly think about this and come up with reasons why this is different.  I don't feel like there will ever be a recovery when the "loss" constantly is in our face.  We deal with the loss on a daily, hourly, min by min basis.  


If I could tell my life through a series of quotes here are a few:

" I use the broken pieces of what once was me to patch up everyone else, and no one has noticed, I'm almost completely empty"


" I don't think anyone really understands how tiring it is to act okay and always be strong when in reality you're close to the edge"

"Behind every strong woman is a story that gave her no other choice."


"No act of kindness, no matter how small is ever wasted."


"Remember who checks on you when you get a little quiet.  Those are your people."


"Can we please stop associating strength with someone's ability to smile through tears and suffer in sileance? Strength is being brave enough to talk about what's hurting you on the inside."


"She's strong but even she can break on nights when her heart feels heavy and tired and is wounded by all the pain that she tries so hard to hide."


Julian and I really sought out God and religion after this happened.  It was our comfort in the early, darkest days when we were all alone and truly broken.   I don't have answers to why this would happen to a sweet young teenager just starting to enter life, who wasn't doing wrong at the time.  I can't believe that this is what God wanted for him or for us.   I don't see what he would be trying to teach us or make us go through to be better people.  I also know I am thankful that God didn't decide to take Julian from us that night but the other results are almost as devastating.  


I read something today about another SCI survivor visiting the Christopher Reeve Foundation.  Christopher Reeve know as the man of steel was not spared.  Paralysis, he said, knows no boundaries and doesn't discriminate.  He tried so hard to use his foundation for good for people like him.  In the past 1.5 years, the stories of injuries are the one in a million.  No 2 stories are the same and could easily be a different result a second time.  And the people we have met are truly survivors.  Not only are they still here, but they have to deal with the ramifications day in and day out and most do it with a smile on their face and hope in the future.  I constantly look at Julian and tell myself, if he is still working hard and happy than I have no right to be sad.  I feel selfish for some of the things we are missing out on, and the person that I will no longer ever be.  As a nurse, I always thought my huge desire to help others, to show empathy, compassion, and love was my biggest characteristics.  I worry that is not me any longer, that I have been jaded by this injury and essentially have become a hardened person.  Maybe this was in the plan?  To have me be a nurse so that I would be able to take care of Julian?  I'm not sure but will continue to keep plowing forward with hope as the guide.  It's all we have, SCI families hold on to little bits of hope like its our only lifeline.  


Thank you to everyone that doesn't take my "I'm good" as the truth all the time.   






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