Waiting to Exhale

The calendar showed October 4th, 2012. She and I sat in the sterile office surrounded by semi-gloss light blue walls, our hearts thumping, hands like ice. We waited for the man who wore a white coat to join us, hoping he would provide gentle answers to appease our questions.

The matter was serious, but when I first saw his face, I thought of Santa, stark white hair and fluffy beard, red, rosy cheeks good for pinching. The only thing missing was the apple red hat, and though he would bear dreadful news, his smile was welcoming, as if the three of us were meeting for a stroll in the park on a lovely spring afternoon.

It was amazing how a tiny scope could be guided through the mouth and throat then down the esophagus. CT scans, lab work, MRIs, and a needle too long to discuss occupied her hours for over 1,000 days. Still, we craved clarity. Our world was hazy like thick fog a driver would endure crossing the Golden Gate Bridge during summer in the wee hours of the morning.
And we waited – a necessary evil that all people grapple with too often to count the times on their hands.

Then on that autumn day came words we would have liked to have hurled back to Santa. We had hoped for gentle. Instead…
“All tests point to this auto immune disease, and there is no cause or cure,” he told us with a touch of remorse. The future would necessitate a transplant. It was not cancer, but this finding should not be shunned. She was twenty years old, like a sunflower of friendliness and optimism. He added, “Just live your life.”

I felt her physical pain rip through each atrium and ventricle – my most excruciating moments of being a parent. But her strength embraced and consoled me, her mother, of all things.
Life pulled us through each season.

The calendar now presents the year 2021: She is a lovely, young woman – a wedding band adorns her left ring finger, and geography has changed along with a new insurance card. She meets with another man who wears a similar white coat. X-rays and jabs repeat. “All of your tests are normal,” he affirms. All is normal. Words we had hoped to hear from this new expert.
“I don’t see a reason to keep you in the same box,” he confirms.

This is amazing news! But abdominal stabs and pruritus from the past were as tangible as a twisted knife to the gut. How can we negate that agony? What is the deeper meaning? Should we get the champagne flutes out, give them a quick wash? Has this nightmare finally ended? She chooses to live in the here and now.
Life continues to draw us forward to witness each sunrise and sunset,
although we are still waiting to exhale.

Lauren Scott (c) 2021

43 thoughts on “Waiting to Exhale

    1. Thanks so much for your wonderful words, Robbie, and unfortunately, this is based on real life. I’ve written other pieces before, but felt the need again. And I am so sorry to hear that you’re living this too. Hugs xo

  1. This is an excellent writing, Lauren. I had diverticulum in my esophagus years ago. I had a “swallowing” test with a tube inserted from my throat to the bottom of esophagus. I watched the test from a screen. The test was like forever.

    1. Thanks so much, Miriam, and you are brave to watch that test. This procedure that my daughter had done is an ERCP, and I’ve had one of these too. I feel that the anticipation and our minds can make things much worse, even though they’re not fun tests at all. I hope you’re okay now…💞

  2. My dear Lauren, you have written a hard piece to write beautifully. Being an autoimmuner too, all I can say is that I consider it a blessing. From the point I found out about it, I breathe better – if that makes any sense. I believe your beautiful daughter does too. Here’s to wonderful news throughout her life. Much love and hugs!

    1. Thanks very much, Marina, and I’m sorry to learn you have an auto immune disease. But I’m glad you can breathe easier, and my daughter is doing fine. We just don’t know about the future because it’s not like this disease can simply go away…unless she was misdiagnosed, and only time will tell. But like I wrote in my poem (not sure what to call it), life goes on and we all have to focus on the good. Sending love and hugs to you too, dear friend. Thank you! xoxo

  3. That is great news. I suppose you can be cautiously optimistic now. Perhaps something major has changed, or perhaps the original diagnosis wasn’t correct.

    1. Cautiously optimistic is a perfect way to express how we feel, Binky. Thank you. Things are better now, but we still don’t have solid answers because of her past experiences. Living in the here and now is what we all do, and the best thing to do. Thanks for sharing your thoughts.

  4. Lauren, I’m so glad your daughter’s latest tests came back “normal”! That’s really good news, and I hope she continues to feel healthy – to be well. It’s definitely hard when you don’t have all the answers, I know. Hopefully someday you will!
    Sending hugs to you 💕💕

    1. Thanks, Betty. It would be nice to have a clearer picture, but as long as she feels good, that’s all we can ask for. It doesn’t do any good worrying about what might or might not happen in the future, either, so we live in the here and now, and one day at a time. I know you know. Hugs to you, dear friend. ❤️

  5. This is awesome. I love your description of the doctor. I pictured santa right away. I too was diagnosed with an autoimmune disease at a young age, but doesn’t mean we need to stop living our lives! If this is true I’d get a second opinion about not having an autoimmune disease. Best wishes 💕

    1. Thank you for your visit and for sharing your thoughts. I’m sorry you’ve also been diagnosed with an autoimmune disease, but it sounds like you have a good attitude. And you’re right about living life! This was my daughter’s third opinion; the first two agreed with the diagnosis. It was this third doctor who wasn’t sure. But she’s going through more testing next month. Fingers crossed. She feels good though and that’s all we can hope for. I hope you are feeling good too, and I wish you all the best. 💗

    1. Thanks, Debby, and we are holding the gratitude. At the same time, we can’t help but think about all the pain she endured in the past. It could’ve been a misdiagnosis, although we had the best trio of medical experts. At any rate, we don’t worry anymore. As long as she’s feeling good, that’s all that matters. 💞

  6. A great piece. Thanks for sharing such a personal creation, Lauren. It is very difficult to live with such a condition hanging over the whole family, but you all have the right attitude, for sure. We never know what might be around the corner, and you’re all making sure you’re enjoying every minute. Sending you best wishes, and I hope your lives are full of wonderful moments in the future as well.

    1. Thank you so much, Olga! I truly appreciate your wonderful thoughts and your best wishes, too. I had written about this before, but I felt the need to write again, though in a more condensed version. And yes, I believe a lot has to do with our attitudes, although maintaining a positive one isn’t always easy. But all is good right now and that is enough to be thankful for. Anyway, thank you again! 💞

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