It hurts to think about all the things you miss because you’re sick.

  • Sporting events
  • Dinners
  • Parties
  • Assemblies
  • Chorus concerts
  • Dance recitals
  • Family fun
  • So many things…

That feeling creeps up quickly and catches you off guard. The realization that a lot of people will never know the healthy & strong, you. For me it’s my granddaughters that hurts the most. I try to do things with them and we have fun. But it’s heartbreaking to think they only know me “sick”.

It’s sucks how much they have to help you. Not only the helping part, but what kinds of things they have to help with and the things they see you go through. I can remember every moment when someone I love, suddenly realizes how sick I really am. I hate it. I don’t want to be remembered as sick. I am so much more than this illness.

One time I was at the lake with my granddaughter & some friends. I got sick, really sick. She had to help me get to the bathroom and clean up. My stupid g-tube decided it might as well leak at the same time. I’m covered in a stinky mess leaking from my stomach, and it’s just everywhere. I wanted to be invisible, it was humiliating on a crowded beach in front of friends & with my grandbaby. I say baby but she was 12 at the time. Still a baby in my eyes.

But I have to carry on. This is happening & I need to take care of it. I try my hardest to be calm & discreet. I wrap a towel around me, ask her to grab my bag and we head to the restroom. Longest walk ever.

It takes me a good hour to clean, change, wash my bathing suit out, get my tube set, etc.. She cried, she felt so bad for me. She was kind & compassionate. In that moment, I realized no one else on that beach or in that bathroom mattered, not one bit.

She said, “I’ll help you to the car, then go get the rest of our stuff at the beach, & let everyone know we are leaving.” Right then & there I knew, we weren’t leaving. There was a huge lesson in this for both of us. I needed to let it unfold.

So we headed back to the beach, pretended all was fine. The rest of the day was awesome, we had a great time! It truly isn’t about the bad stuff. We decide what makes our highlight reel at the end of each day! This was a day of making memories. I think that she learned that you can clean yourself off and carry on, know matter what life throws at you. I really hope she only remembers the fun that was had that day.

After all is said and done,
I hope this is what she remembers.

I’ve had so many moments like this, calling my son to come pick me up off the floor, my husband having to clean me up after a disastrous bathroom experience, falling & knocking over an entire rack of m&m’s in the grocery store, I even peed as I fell 😳. It’s not pretty being sick, shit happens. It sucks and it’s ok to be exasperated, discouraged, & pissed off. But we can’t stay in those feelings. Once we do it’s game over. I’m not ready to surrender.

This picture was taken after days of being to sick to really do anything. On these days my highlight reel is full of laughter & love, through pain. I thank God for those who love me enough to spend their time just being with me, when I’m really going through it.

People like to tell us that God won’t give us more than we can handle. I love god. But I call bullshit. I think he gives us a lot more than we can handle. Then he patiently waits for us to learn the lessons in those moments. Once we learn what it is we need to, then he grants us grace and leads us out of the darkness.

Be courageous, you never know when your story might save someone who’s lost in the darkness.

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