It’s really a dizzying vacillation between the two. So much time is spent at the red flag, laser focused, all hands on deck stage, that when there is a pause to give some time to breathe, and maybe look for the butterflies, I am the most lost. Sometimes the pause is hours, sometimes days. Occasionally it is weeks to months but rarely longer. And just about the time I start to notice the butterflies, we are tripping over red flags again.
This is life with Cowden Syndrome. This is probably life with many chronic and/ or rare diseases.
Meghan went back to college 8 days ago. She is adjusting, despite some need to still heal physically, and emotionally, she is pressing on as she always does, now mere weeks from her Bachelor’s Degree and the start of her Physician Assistant program.
We talk every day. And I love that. It doesn’t matter who calls who, or who texts who. It just feels natural to be in contact. I am here to listen when her anxiety is high, and when she is celebrating her successes. And she does a lot of the same for me.
We are interconnected in a way many can’t (or won’t try to) understand, at this time in life where we are both hoping to find and establish ourselves in the next phases of our lives. I am a few years out from retirement and she is ready to prepare for career of promise as a Physician Assistant.
I laugh with her on the good days, and I cry with her on the not so good days.
Many years ago when she was months old and slept poorly, our pediatrician once told me I should leave her to “cry it out.” I fired him. For us, this is the better way.
Anxiety is my biggest burden to carry these days. I try to tame it, but I often fail. I label it. I call it out for the useless freeloader that it is, but it is not ready to leave me. Not yet. I think that comes along with this rare disease thing too.
Fight or flight. Lather. Rinse. Repeat.
If I do not stay diligent we miss something. If I do not listen to my daughter, we miss something. If I do not stay up on the screenings we miss something. If I do not stay attentive to my own PTEN body as it ages, I miss something. Anxiety is my constant companion these days.
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I cry. I laugh. I scream and yell. I feel all the feelings. And there are SO MANY.
I think that is how I survive, and how I remain helpful. I don’t think I have the luxury of keeping my head in the sand or ignoring the realities. We have a lot of work to do to stay at least reasonably healthy.
Being a PTEN patient can feel scary. This world can feel even scarier.
One day I will figure out what I will do with my the time in between the red flags. As I get to spend more time with the butterflies, I will figure it out… and I am looking forward to it.
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Today though, I will check in on my college girl one more time, forever grateful for her strength and fortitude. I will pray for peace, and guidance for how best to live as a patient, as an advocate, and as a Christian in this crazy world.
Paying attention is exhausting, then again, so is…
...beatingcowdens
