Tube-free

For most of the past 18 months, I didn't let myself dream of a day where we got to remove Frankie's feeding tube. I couldn't bear to dream it for fear that it mightn't eventuate. I'd rather sit in the dark, and have it remain dark, than enjoy any kind of falseness that suggested there was an end to all of this hell.

As the tube wean went on though, and Frankie came to the table excited to eat, cracks in my armour started to appear. Without realising I was doing it, I let tiny fragments of hope slip into my life. The first of them came undetected. After a while I noticed the odd piece of hope floating past as I watched her chew, or drink, or scream 'more' as I prepared food. I tried not to pay much attention. Worried that if I let my eyes focus on this hope, this light, then I wouldn't be able to stop. Before long though, there was too much light shining in to ignore. The cracks had been ripped wide open and all I could picture was Frankie's tiny face, free of tape and free of a feeding tube. I was terrified that I'd jinxed it. That for the first time in 18 months, picturing the day we got to remove the tube, would somehow stop it from happening. And so I tried desperately to patch the armour. I shoved negativity into every crack, telling everyone around me that the tube-wean was never going to work.

After 3 weeks, the dietician told me that if Frankie's tape got dirty, to simply remove the tube. I couldn't ignore it anymore. The light flooded in and I smiled through tears. Finally I let myself bring to the forefront of my mind what I had hidden for 18 months behind all of the anger...I pictured what I expected that joyous day to be like. I pictured it in intricate detail.

The day arrived. We were removing the feeding tube with no intention of reinserting it. But it wasn't an unprecadented joy that I felt. It wasn't love, or hope or light. Because the morning after removing it, we weighed Frankie and she had lost 100g. So what I imagined to be a day full of love, the first day tube-free, was instead filled with tears. The last three weeks I'd buried my feelings so deeply that not even I knew where to find them. But with the weight loss came all of the feelings. It was simple. If she couldn't maintain her weight, she couldn't be without a tube.

How dare I believe that we deserved joy? How dare I believe that we would get to celebrate? Instead we got grey. Not light. Not dark. Not hope. Not desperation. Just grey. The tube was out. We got to see her face. But if she didn't maintain her weight, it'd go back in. It's like I'd let the greatest flood of light in and all I could do was wish that I was still sitting, hopeless in the dark.

But, that's not how life is. Ella Ward recently described her experience post-cancer. She was meant to be celebrating five years cancer-free but instead got a test come back looking...questionable. Her description not only described my own post-cancer journey so well, but also described this whole tube-free situation. She explained that while we might have been expecting "champagne, streamers and maybe a little parade...disease doesn't work that way." And, as it turns out, neither do feeding tubes. We're forced to live in the grey. The in-between. The will she eat enough to put on weight, or won't she? And it's shitty and hard and frustrating and god damn exhausting. Because we're tube free, and a little parade really would have been nice.