It’s just three steps. Three small steps. It could have been the Great Wall last night. 

A year ago, I didn’t worry about ramps and handicap accessibility.  Only a year ago, but it’s also a lifetime. 

I simply assisted her up, had her hang on to the wall or sit on a bench, and went back for the chair.  

A year ago, if we wanted to do something, we made it work. If we wanted to swim, I helped her slowly into the water, and then helped her out, on her own two feet. People asked, “How will you do this with the wheelchair,” and my response was, “We can make it work.  If she wants to, we will make it work.”  Was it really only a year ago?  It had to be, but it seems impossible tonight.

A Stumble, a Fall and the Hard Truth

Anyone could slip once getting out of a pool and hurt their finger. I teased her good naturedly for making a big deal about that.  The truth is, every fall terrifies me because I see her head hitting the surface, or a bone being broken.  This fall was fluke; it was tiny.  We were fine.

We sat on the pool chairs and she told me how she hated what was happening to her body; the things she was losing; the sound of her voice changing.  “Validate her feelings,” the experts say.  “One day at a time.  You are doing great.”  I try to.  I tell them I understand.  I do, cognitively, but in my Mama heart it makes no sense at all. 

It feels so empty, and we find ourselves in silence. The A silence is thick, oppressive.  She wants me to tell her it will be okay.  She’s still hoping I will tell her I can fix it. I read all there is to read. I’ve contacted everyone there is to contact. I’m still letting go, slowly, of the hope that having the best doctors will mean they can fix this.  In truth I want to scream at them “Why won’t you FIX THIS!?” I pray that on the day I do scream, they don’t leave. 

It became cold quickly, and dark.  I lifted her from the very low pool chair, to her feet. It was maybe 15 feet and 3 steps to the house and I really thought we could do it.  I don’t know what happened, but she stumbled and I could not catch her. I’ve always caught her. Instead, we both hit the concrete incredibly hard. I did my best to lift her, but she would not put any weight onto her feet, and we fell again.

I don’t want this to be a memory, but it is. It is the day that 15 feet and three steps was too far.  It’s the day that I picked my nearly 17-year-old daughter up off the ground, and carried her into the house, worried I wouldn’t make it.  The day she was in my arms as she hadn’t been in 15 years.  I laid her gently on the bed, still a bit wet from swimming, and covered her with blankets. I remembered how she used to fall asleep in my arms after swimming while I admired her little blond pigtails and peaceful face, rather than wake her.  

Will I Die Soon? 

I stepped out to find her clothes.  When I returned she asked me, “Am I dying?  Will I die soon?”  I don’t know, and I do know.  I cannot bring myself to tell her the things I know.  It’s her right; it’s her life; I know I should, and I can’t.  Instead I offer her the best I can, an offer to call her doctor and talk about the things I am too weak to speak about. 

I am reminding myself today, in the middle of the Georgia countryside, that this is why we left on this crazy trip.  I try to tell myself I made the right decision, because next year, I won’t be able to do so many of these things. I tell myself the rest will be good for us, here in the country where the only sounds I hear from the porch are the click clack of my keyboard, wind and bird in the trees. 

The truth is, the quiet has made room for us to hurt. There are no floors to scrub or diapers to change.  No college classes to keep me busy.  Distraction is my pain reliever.  Business is my escape. 

I Don’t Want to Be Still

“Be still and know…” I hear and in my head I am screaming, “I don’t want to be still!” The sign in the bathroom says, “His mercies are new each morning,”  and my heart screams, “How is this merciful?  How is this good?”  I feel guilty for my thoughts and the prayers that tumble out with my tears, which are nothing like the flowery prayers a person hears in church or reads in devotionals. 

I want to stomp my feet, plant them deep in the earth, and refuse to move forward in time until I have answers and healing. That’s not my story.  I’ve known it for a long time.  I knew it before the doctors agreed with me and before the wheelchair was a permanent form of travel. I told myself I accepted it, but I’m not sure that can ever be. Resignation is more suitable.  I am resigned to our future.

It’s mid-afternoon in Georgia.  In a couple hours, my daughter will be told just how short her life likely is. I don’t understand this piece of the plan, but somehow I am grateful we are not at home.  I don’t know how I can possibly offer any comfort, but I am here, she is here, and there is nothing else to pull me away. 

Small Steps

Details about travel; worries about lodging and gas; airline tickets.  How could that seem scary?  Traveling across the US is so small compared to this.  THIS is my big step.  This is my insurmountable range, my stretch of highway that is too long and dark. This is the heartache I’m not sure I can overcome and the point at which my faith seems to be cracking and crumbling at my feet. 

The thought of traveling the world with nothing but the clothes on my back; climbing mountains and crashing through white water, this is nothing. I am taking the small steps in my path today.  Just a few small steps.  Just one foot after the other.  

I can’t.

I know on the other side there are better days, but I can’t walk myself there. I pray God will carry me. 

Click to learn more about Riding on Sunshine.