I remember the way you were feeling the moment the date of discharge came near. I remember the fear and anxiety of leaving the safety net of the hospital. I remember the disappointment that comes with taking the wheelchair home, along with all the other equipment that looks like it belongs in a hospital and not an apartment. I remember the fear of failure. I remember wondering, “Can we honestly do this just the two of us?” I remember the heaviness and exhaustion of the last 90 days of our inpatient stay. I remember trying to memorize all the tips and tricks we had been taught, while also trying to remember what do when he starts to have autonomic dysreflexia (AD). I remember the hours sitting on the bridge watching as others would enter the doors of the hospital, the tears you shed in the same spot and the loneliness you felt.
I remember not wanting to learn what a slide board was or what to do when he could not get off the couch, because this was going to be just a season in life, not a forever thing. I remember how difficult it was to hear some of the words mentioned in his last conference with his team. I remember how odd it felt to celebrate Thanksgiving and Christmas in a hospital. I remember the relationships that were made with his physical therapist and his nurses – relationships that still mean the world to us. I remember the day Kaleb’s physical therapist had a heart-to-heart with you, where he took the time to explain that you were not just a girlfriend but, for now, also a caretaker. I remember feeling disheartened because you thought he was going to walk right out those hospital doors and life was going to go back to “normal”. I remember wondering how the world would interact with someone in a wheelchair. There were so many questions, so many concerns, and no idea what to expect or what to do.
Five years later, many of those feelings are now memories, memories that are shared with the feeling of accomplishment and teamwork. In five years, we have moved our mountains, we have found our footing, and we have lived our life. We have learned a lot, a lot of which had to be learned outside of the hospital walls. We learned a lot when the visits of friends and family slowed down, and it was just the two of us. At times it has been hard, watching others move on with their lives and live a “normal life.” It has been hard when my heart still aches on the anniversary of the accident, and yet others may forget all together. It has been hard to bid farewell to dreams that we had for our lives and to accept the plans that we are developing. It has been hard, but beautiful.
In five years, we have learned how to make things work for us. We have figured out how to pop over curbs and bump down stairs. We have figured out that normal is what you make of it. We have figured out that though we cannot walk and hold hands, rides on his lap are great. We have figured out that I am a horrible driver, and it was a wonderful thing when he received his license. We have figured out that wheelchairs scuff things and that paint is a beautiful thing. We have figured out that we can do it, we can live this life.
It’s hard, and it’s a choice to choose joy in the midst of chaos. But it’s a beautiful life you don’t want to miss. If I can leave you with anything, it’s a few points that you will want to remember over the next few years.
Find the two of you. This is Kaleb’s injury, but it is also your life. Yes, it has affected a lot of people, but this is your journey… together. Find out what it looks like. Be willing to accept help from others, but remember you two can figure most things out.
You will be okay without the hospital, I promise. This hospital has given you the strength you needed, the tools you will use, and friends to rely on – but it is okay to step away. Find friends that maybe don’t know what a quad cough is. Tell Kaleb it is okay not be in physical therapy. He will need a break, but he also needs your support. It will be good to move forward – always move forward.
The wheelchair is just a tool, not his identity. Leaving the hospital with the wheelchair feels as though you almost have a third person in your relationship. You don’t; the wheelchair does not change who he is or even who he was. It allows you to continue to live your life as normal as possible.
Make a community. Go on the adventures. Find a sport that he likes. Encourage him to sit ski. Meet people who understand what you are going through and what he is going through. They are the only ones who truly understand what living and loving someone in a wheelchair looks and feels like.
Don’t let it slow you down. Don’t worry about the chair getting in the way of your adventures; it is just an added accessory. If you want to do something, you will find a way to do it. If you want to go hiking, go hiking. If you want to ride every ride at Disneyland, then grab a pair of ears and jump on the ride.
It’s okay to accept it. This has been one of the hardest things to understand and honestly embrace. It truly is okay to accept it; it is okay to stop dreaming of him walking again. And most of all, it is okay to move forward. It does not mean you are forgetting the dreams and goals you once had. It does not mean you don’t believe in miracles. It does mean that you can move forward, you can make new dreams and you can live a beautiful life with the chair.
Leaving the hospital five years ago, I longed for “normal,” I pleaded for easy, and I begged for a change. I wanted our hopes and dreams back. I wanted our life back. However, I had no idea what was in store for us. In the last five years, we have let nothing stop us, including the chair. We got married, we bought a house, we had a daughter – all things that I worried the chair would get in the way of. It did not. Everyone has struggles. Everyone faces trials. You can just see ours.
You’re going to be okay. I promise you that.