Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories.
The complexity of CF extends far beyond the sticky mucus that fills the lungs, pancreas insufficiency, and skin dusted with salt- it's felt within every emotion, relationship, and mood. Living with CF can be both mentally and physically exhausting and that can often times come out upon friends and family. Today's guest post by Chrystal is an honest and real portrayal of the struggles of living with CF and the impact it can have on those closest to her. It also is a great testament to love and always finding gratitude for those who are willing to share in the journey of living with CF.
"It's happened again. I'm at the end of a long day of family activities and the exhaustion crept up on me...until it pounced suddenly and I snapped. I think any mom can relate. The three year old wants to play dress up with jewelry and I'm too tired to sit up straight. Let alone see straight to fix the tiny clasp of a necklace. She doesn't understand why I'm short with her. She tries though. She'll ask if I need a therapy, or she'll put her little hand on my chest and close her eyes for a few seconds. And then announce that I'm all better. So cute.
There's a part of me that hates that she has to know I'm sick. When I'm struggling to breathe or when it hurts to inhale deeply, she watches me closely and seems to understand. Maybe it's a gift I'm giving her, the gift of empathy. Of seeing another person in pain and stopping what you're doing so that you can sit and be with them.
Then there's my husband. What a saint! When CF literally takes my breath away and I need a therapy immediately, I can get pretty testy with anyone who gets in my way. It just feels so urgent, the need to breathe. And it is urgent. But I've found there's a difference between what's urgent and what's important. In the big picture, my need to breathe is not any more important than his need to feel appreciated.
Even though it means sacrificing his needs at that moment, he consistently does whatever i need so that I can get my therapy done. I find cf to be a task master at these times, my lungs demanding the relief that comes with airway clearance. So uncompromising, and potentially so hard on a marriage where compromise is essential. My dear husband will postpone his plans if our little girl isn't in the mood to sit through one of mommy's therapies. They will leave the house so I can focus and do my best therapy possible.
What tears me up is when I catch myself snapping at him because, even though he's sacrificing his plans for the evening, I think he's not moving fast enough. I forget his very important, though seemingly not urgent, needs. In my haze of breathlessness I overlook the fact that he needs to hear an encouraging word from me. A grateful word. A long, heartfelt embrace. Those things speak to him and meet his needs. Even though, in the moment of exhaustion, I feel like I barely have the energy to breathe through my last therapy of the day. Especially then, I need to pause, look him in the eye, and tell him how much he means to me. How I couldn't do it without him. That I like his sense of humor. That I like him, period.
When we were dating, I told him I might not live long enough to celebrate any meaningful anniversaries. Like a 10 year anniversary. My thought was perhaps he would want to choose a different spouse that he could more likely grow old with. His response, which I'll never forget, was "I don't care if I only get you till you're 30 or 40 or 50. I want you." Wow. So sweet. He is still the sweetest man I've ever met. And the most forgiving.
There are no guarantees in life, and I've learned that first hand. I thought it was guaranteed that I wouldn't make it to 40 years old. I thought I would never have a child of my own. And I thought I could never respect and adore Lucas more than I did when we were dating. But I find my admiration growing with every selfless act of my faithful husband. Thank you, Lucas!"
- About Today's Contributor -
Chrystal is a 42 year old with CF. She has her degree in elementary education with a minor in family ministry. Her passion is her family: husband of 17 years, Lucas, and three year old daughter, Hadassah Joy. In her free time, Chrystal enjoys rough housing with her dogs, playing at parks with her daughter, and discovering new restaurants to enjoy with her husband. Read Chrystal's other contribution to Breathe 3-65 - Chrystal & Lucy