What if

How self love grew out of the transition from hospital to home

“You should pack up all the leftover medical supplies in the room,” the nurse said to me, “when they come to clean it, everything gets thrown away.” I looked around the hospital room my husband had called home for the past six weeks. The whole double window ledge was littered with supplies; a tube of barrier cream barely used, almost full packs of body cleansing wipes, tons of half used gauze packs and even a pair of scissors, still in its sealed package. My gaze looked out the window to the UW stadium, to Lake Washington, to the other side of the 520 bridge, to home.

“How stressful is this going to be for us when we go home tomorrow?” I asked the nurse.

“It’s usually the first 4-5 days that are really hard and then it gets easier,” she replied.

I can handle 4-5 days, I told myself. Little did I know how wrong she was.

We had to hire a private accessible ride home for Ryan. It would be some time until we were able to find an accessible van for ourselves. As I drove home by myself, multiple hospital bags sitting full in the back seat, I found my thoughts reflecting over the past ten weeks. The surgery to remove an infected abscess next to his spine, him waking up in the ICU not being able to feel his legs, the doctor telling us his blood pressure had dropped too low for too long. The devastating blow of hearing that he was paralyzed from the chest down. Four weeks in different hospitals to deal with multiple complications followed by six weeks of rehab at UW medical center in Seattle. Me either at home with our six- and eight-year-old boys or at the hospital. I was so ready to have Ryan home and yet I was equally scared. Terrified, if I’m being honest. No call button to push. No nurse to talk to. No hallway to run down and get help from the nurse’s station if there was an emergency.

I was pretty disconnected from my body at this stage in our story, so I can’t recall how my body felt in that exact moment, but I can make a pretty good guess. I’m sure my fists were clenched over the steering wheel, my shoulders shrugged up near my ears, my jaw clenched tight. The fact that my mind was reliving the past ten weeks the whole ride home, though, shows how much I was disconnected from the present.

Those 4-5 days came and went, yet the stress was still building. It was June, the boys would be out of school soon for the summer and I was still sick with a sinus infection that I just could not kick. The constant pain behind my sinuses that wouldn’t lessen coupled with the exhaustion that wouldn’t let up. What if it’s too much for me to entertain my two boys throughout the summer and take care of my husband? What if we can’t find an accessible van? What if I didn’t start feeling better? What if, what if, what if circled in a non-stop spiral around my head.

The anxiety spiral continued as we got hit with complication after complication that required hospital visits that first year. So many complications that we actually lost count. Blocked catheters, a fall down two stairs that had him land face first in his chair, a burn to his foot so severe we got transferred to Seattle’s trauma hospital, a wound that turned infected and then the many others I can’t even remember. It definitely was much more that 4-5 days of stress. We only had caregivers for weekday mornings, so I was doing the weekends plus sleeping in a cot next to his hospital bed, turning him every three hours.

The deep-down imprint this all was leaving on our nervous systems, I had no idea about. All I could see was that I wasn’t able to physically keep up. I would later learn about trauma, how it’s stored in our bodies, how emotional weight can manifest in our bodies, that anxiety building and building. For years after the fall, our youngest would run ahead and put his arms out to make sure Daddy didn’t go down any more stairs and yell, “Stairs ahead! Stairs ahead!”. It was heart breaking to see how it was affecting our kids, so I quickly set them up with therapy and extra support at school. The staff at their school were amazing to my boys that first year. To get that help for my boys, I didn’t hesitate.

Not surprisingly, I hit rock bottom. I had no idea what caregiver burnout was, but I was deep in it. I remember lying on that cot, crying. “I can’t do this anymore!”

It was a much slower journey to seeking out help for myself, but I at least was able to acknowledge that I needed the help. I got myself into therapy, hired more caregivers and started my journey towards self-love. Little by little that self-love grew. It was a lot of two steps forward and one step back, but I kept taking my next right step. For the days that it felt like two steps back, I wrote myself this letter. Now on those hard days, I can read this to myself:

Dear Lovely,

This will pass.

This feeling of isolation and not being able to move, frozen in place, in a fog with your feet in the mud.

This will pass.

The voice of fear that says you are sinking into depression again. You won’t be able to get out.

This will pass.

This is just a thought, and this thought is not your true, authentic voice. But also remember that you don’t have to jump out of the mud the moment you feel it creeping up. Sometimes we are called to sit with it for a bit. To feel into our body and have it serve as a reminder that we can hold both/and. Both the sadness and the joy. A reminder that dark moments can also hold glimmers of light.

You aren’t weak.

You aren’t unworthy.

You have found your way out before, and you will do it again.

Life is full of circles - we work through, we feel, we heal, we climb out, and in time, those same lessons will circle back around. But here is the beautiful part - each time you circle through, you rise a little higher. Your awareness has grown, your heart has expanded, your inner voice a little louder, your self-love stronger and those joyful moments more visible.

So, root those feet to the ground and sink into what you know to be true. Let your body, your inner fire, guide you. Drink a glass of water. Breathe. Breathe deep. Dance. Sleep. Whatever it is, you have the wisdom inside of you. Let your light lead the way.

And so, I did just that as our first year wound to a close, I let my inner light guide me. I looked for the glimmers of joy. The new van for our family, the newly remodeled bedroom with an actual bed to sleep in! Ryan’s new wheelchair arriving, the neighbors, friends and family who rallied around us. The care packages that arrived in the mail from friends wanting me to know I was in their thoughts. The family members who came to stay and helped with home projects and loving on our boys. I spoke words of affirmation to myself, I am worthy, I am confident, I am loved, I can be. I held strongly to the words of Glennon Doyle, “The truth is that falling hurts, the dare is to keep being brave and feel your way back up.” I wish I could tell you, that now, seven years later I am the epitome of self-love and am now living an embodied life, fully present, fully in flow. But that’s not real life, is it? Life will continue to throw surprises at us, and we will continue to be human, making mistakes along the way. The beauty is that we get to learn as we grow and heal.

I replaced the anxiety spirals with, “What if I am strong enough?”

“What if I can do this?”

“What if my story will be someone else’s lifeline to hope?”

“What if.”