On March, 10 2015, we received a phone call that would change the course of our life forever. Many of you reading this will be able to relate; the sudden numbness that comes with a tragic, life-altering event. That call, telling me that our 16-year old son, Connor, had been in an accident, that he had been struck by a car and we needed to get to the hospital right away, blew up my life, my family’s life, and our son’s life.
While walking to school, with no warning, Connor had been struck and then left on the side of the road, resulting in a catastrophic spinal cord injury (SCI). In the ensuing four hours between when we received the call and when I could first hug my child again, my mind was reeling, truly unable to process what this meant and how we would move forward. Obviously, I knew it was extremely serious and frightening, but I could not possibly anticipate how drastically our life would change or how difficult the aftermath of all the pieces falling down would become. My family, friends, community, and every part of me blew up in slow motion and began to slowly fall back into some sort of new reality, piece by piece, over the next couple years.
Before Connor went into surgery he said two things that will be burned into my memory forever. "Mom, I am really sorry I was such an asshole this morning, I promise I will be a better son.” (We had had a really bad fight moments before he walked out the door that morning) and, “Mom, can you fix my legs?” Those words were and still are crushing, because you simply cannot fix this terrible thing for your child. However, I did make a promise: “We will live life just as we always have lived. We will get out and do what we always have done. It might look different and we may have the doctors fix those bones and get you out the door and you will grieve for your old dreams and life and you will find new ones.”
With this breaking of the body, comes a breaking of your spirit. It breaks and you put it back together and amazingly I have found it grows even bigger. It grows bigger because you may have more of it to give away to your loved ones, yourself, a stranger, or who knows. It will continue to grow and break throughout your life. You have to get out there and keep going. I promised Connor, that we would get out there and live a bad-ass life and I will be right beside you. I can say I have kept that promise to him. We have done just about every adaptive activity that is out there. We try to make it look easy for Facebook posts, but many of you know the truth: every event and outing takes planning, grit, and effort. It would be easier to stay inside-but that was not my promise I made to him and that doesn’t align with our family values.
And that leads me to this blog and this foundation. I want to do something to help and give back to everyone that has helped us. The Arch Foundation is my attempt to help people out there, breaking and rebuilding of the spirit, going through what we did and are still going through; the full-force crash onto the ground like you see in the movies after an explosion. I understand what many of you reading this understand: that “paralyzed” means so much more that simply being in a wheelchair. You have watched your loved one change instantly from a person who was able to do everything own their own, to having to literally relearn everything, from putting on their socks to sitting up, to taking care of their personal needs, all the while grieving the loss of what they thought their life would be. And I also recognize that everything becomes about them- and it is so crucial that they have that support to become independent again, but once you know they are "OK" and you get into the day to day rehab of the things, I have learned how important it is to really take care of your own health and well-being.
Since we began this journey a little more than 2 years ago, we have met so many beautiful, selfless caretakers and I have noticed a significant gap that I hope The Arch Foundation can fill.
While our loved ones with SCI or traumatic brain injury (TBI) have access to many resources for equipment and activities and other things that they might want to try, we caregivers often feel isolated, or forced simply into a role of being a mule- carry chairs, catheters, checking skin, delivering medications on time. I love Connor and will continue to fight for him, yet I know I cannot bring my best self to the table each day unless I am energized, healthy, and present both mentally and physically. It is not easy! We take care of our SCI or TBI loved-ones, we take care of our other children and spouses, try and keep friendships and jobs, and hope for a moment to breathe.
I have come to see that the small things, such as 30-minutes at the gym, a massage, a brief chat on the phone with other caregivers on joys, challenges, and everything in between can mean the difference between a successful week or a week where you feel you let everyone down and you are all alone in this world that has blown up, where everything is crashing down on you and you are not sure where it is all going to land and not sure if and where anyone will be there to help you put the pieces back together.
My hope is The Arch Foundation can offer a haven for caregivers. Provide a support system they do not usually have access to; a group of other caregivers they can talk to when they feel like saying, "Today I felt like pushing my son out the front door!" Or, “I am so sick of cleaning up pee and poo on the floor and just want a drink and a cry.” I want to offer events specifically for us to have fun. We deserve to go paddle-boarding one day by ourselves and not feel guilty. We deserve to have a break to go out to dinner with our spouse or manage to get to our other children’s activities or take a backpacking trip with our other kids and not feel like a horrible parent and be present for that spawn because they feel when you are not there for them-the list can go on and on.
Bottom line: If we do not take care of ourselves, how in the hell are we supposed to take care of our loved ones. Most importantly, I want The Arch Foundation to be about supporting each other with humor, understanding, love, and yes a little vodka or wine. ☺
Lots of Love