2 YEARS

 August 21, 2021,

2 YEARS! 8/21/21 at 11:21 pm our world blew up. I wish I could look at this day more positively and hopefully with time it will come. I wish I could be as easy going as Julian and treat this day as any other we’ve endured over the past 2 years. He is stronger and braver than he ever could have imagined. His determination to adapt, to find new paths, and to redefine himself has been inspiring.

The memories of that day continue to haunt me, every moment, sound, sight, thought, expression on others is on replay.  

Even being a nurse, nothing could have prepared me for the ache of watching my own child deal with pain and struggle. I’ve prided myself in being good at my career, but this has been uncharted territory. I feel helpless, wishing i could do more and question if I miss something crucial to keep Julian as healthy as possible. This battle is difficult because it’s never been won before. This is where our hope and faith of future possibilities comes into play. My role in life may be to be an advocate of progress as we dedicate ourselves to being part of the solution. Science is amazing and I have to believe that one day soon there will be huge advances to make so many lives brighter.  

As we make it though another year we continue to be surrounded by a huge support system of unconditional love, support and strength. To see how much Julian is loved is a good reason to celebrate today. I am thankful for family and friends that are there for me for the good days and bad ones. Friends that send me new advances in the world of SCI. Friends that continue to be a part of Julian’s life and show up so he never feels alone. Friends that have helped care for Julian for me to be able to enjoy activities with Alex and Lilly. I always question about sharing our story but I hope it serves as awareness to something I knew very little about before Julian was hurt. I have read that hope isn’t a passive emotion, it’s an active force that fuels progress. It’s the faith in science to uncover solutions that were once deemed out of reach. That is what I will hold onto: hope.

I have been trying to think of how to explain the feelings of the anniversary of such a tragic, traumatic event as a mother to her child. Experienceing the anniversary of such a life- changing event, such as witnessing your child's car accident that has left him paralzed, can evoke a complex and overwhelming mix of emotions. Like I said, the vividness of the memories and the weight of the event can make the anniversary such a challenge to navigate emotionally. As the anniversary approaches, there's a constant undercurrent of unease that builds each day closer to the date. It's as if the calendar days are counting down to a storm, and you can feel the intensity of your emotions heightening with each passing day. The sense of anticipation is heavy, and your thoughts involunatrily drift back to that terrible day, as if your mind is replaying a haunting film.

On the actual day of the anniversary, you wake up with a heaviness in your chest. The emotions of sorrow, anxiety, anger, and an overwhelming sense of loss. The loss isn't just Julian's physical condition. It's my life stopped. My kids life will never be the same. I lost my career, my friends, my life as a mother to my other children, my relationship with my husband was changed, my daily activities being dictated by Julian's care. Being home to dress him, turn him, give him meds, monitor for bedsores, managing his blood pressure, feeding, grooming, bathing, organizing doctors visits, therapy visits, fighting insurance, ordering medical supplies, missing family functions because places are not handicap accessible, etc. My whole family lost a part of their life that day. The world becomes muted, and the only thing that can be thought of is the profound loss. The loss when thinking Julian didn't get to go to college like his friends, and can't do most things with them because of his accessibility, wondering if he will ever get to live on his own and have a life he dreamed of before that day.

Every detail from that day remains etched in your memory: The weather, the sounds, the expressions on people's faces, and most vividly the car that Julian was in that I ran up to on the side of the road in my pajamas in the rain. I will never forget. I had to pass the firetruck that was already there before I could see the accident. A female police officer was in the road who stopped me from going to the car. I heard her radio that the mom was present and all she told me that Julian was awake and talking. I had to call my husband to come up the street to be with me. To get him, I had to call my 12 year old to get him. The car was facing the street on the side of the road with the window shattered. It's as if the present has merged with the past again to relive it over and over.

Throught the day, I try to put on a brave face for Julian so that I do not let my trauma affect him. Tears come with the slightest thing. A song, or thought could connect to the trauma. It's as if the wound has been reopened and the pain is just as fresh as that night.

I found myself not sleeping the week before, every thought preparing myself for the day to come. Even tasks that usually bring joy no longer do, and you wonder if you will ever truly feel joy and happiness again, because I don't feel like I have since the accident. The intensity of the grief is so high, especially when you see your child experiencing ongoing struggles and life will never be the same. It's a relief when the day comes to an end, but the reality of the situation is that the following day will feel just the same without the date involved.

In nursing school, we study grief. I know it can be highly individual and can vary based of the the situation. I'm not sure how long the stage of grief will last. As a mom, its hard to believe at this point that it will ever go away until his life significally impoves. Having a child become paralyzed is extreme, and life- long. It's hard to accept this a as a new reality. I'm sure the grief journey will evolve over time, and for my own well being,I hope it lessens with time and becomes more manangeable. I can't see the feelings of loss, sadness, and longing to have our old life go away, especially during anniversaries, milestones, or triggering events.

I have learned that a mother's intution is a powerful and ofter unexplainable phenonemon where a parent may have a strong feeling or sense about the well-being of their child. I felt that the night of the accident. I had called and told Julian to be especially careful on his 3 mile drive home. I was watching Life 360 in realtime on his drive home. I called several times when his tracker stopped moving and withing 6 minutes I was on my way to him which is the first time I had ever done that. The anxiety I felt that night was real. I had tightness in my chest and a know i my stomach as I got ready to leave. When I opened the garage door and heard a ambulance, I knew he was hurt and needed me. I even knew he was paralyzed before they told me. It was the first question I asked him on his way to the ambulannce. Thank goodness the sweet parametic let me be in the back with Julian. It was the only thing I could do at the time, was try to keep him calm and reassure him that we were going to get throught this.

Not only am I Julian's lifeline, but I have 2 other children to make sure come out of this tragedy whole and feel loved even though they have loss their brother and mother for a large part of time as we make the most of Julian's recovery.

In the spinal cord world, 2 years was a significant date. Another reason this anniversary was so hard. We have always been told that at the 2 year mark, He will have most of what he will get back at this time. We obviously are a long way away from where we would like to be and this looming time frame has been stressful thinking this will be it for the rest of his life.

Spinal cord injury is probably the worst outcome short of death that Julian could have happened in his accident. It's an incrediibly challeneging and has lifelong implications. The spinal cord plays a cruical role in transmitting signals between the brain and the rest of the body. When it's injured, the consequences can be profound, affecting mobility and sensations, and bodily functions below the injury site. And the degree of paralysis is more affected by the degree of compression rather than just which bone broke. Having a very high cervical injury with complete compression will make you paralyzed basically formthe neck down, creating a HUGE need for complete care. The emotional toll of a spinal cord injury can also not be underestimated. Individuals experience grief, depression anxiety. While complete cure is elusive, much is on the horizon. Hopefully people will realize how important their research is and do their best to come out with options in a timely manner.

It's so good for me and Julian to know people also remember the day that changed our life and are thinking about us and wish us well as we navigate the most horrible day of our life.

Y