"Frogging Feelings" : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

"Frogging Feelings"

by RNE submissions on 10/17/18

by Jenna Anne

There’s a term in crochet/knitting called “frogging” this is the practice of intentionally unraveling. Occasionally there comes a time when you become stuck, it doesn’t look right, doesn’t fit right, it just doesn’t make sense, so you “frog it.” You grab hold of your working yarn and give a tug undoing all the work you have just done. Some look on it negatively as erasing hard work, some flip that positively and choose to frog to recreate and repurpose. Often in life I feel the desire to frog my work. To pause and back up and try again. To undo a moment and recreate it differently or to take what I now know and implement it earlier on.

I am known for my knitting bag. I have a yarn stash with me wherever I go and I use it to help keep my hands and mind busy whenever I need a calm space.  It’s amazing how much time is actually spent waiting and idling in the chaotic whirling world of medicine. Jump in the car, rush to the appointment just to sit for 45 minutes because, yet again, the doc is behind schedule.

I woke before the kids this morning and sat as my fingers busied away making a garment of intense pattern complexity that probably all 4 of my kids will outgrow before it is ever worn. It was busy work but I was able to pick it up and put it down in a moments notice. A consistency to come back to. I sat down next to my kids and watched my babies play and shut my mind off allowing myself to make a memory recording of these beautiful moments. How one routinely reached out for her sister's hand each time she climbed the slide and how the other enthusiastically pushed her sister's hand away to prove she could do it on her own just to reach out again and connect when she landed. The rhythmic subtle snore of my sleeping son over the monitor and the beeps of his machine doubling the tempo. Staccato shrieks of laughter and tremolo giggles as my needles marched along. It was a beautiful symphony being orchestrated around me and I realized I was knitting not just a garment but a memory.  I will forever remember the creation of this piece. When it was constructed. how. when . where. And it struck me deeply how I wanted to make more of these moments etched in memories.

Through all the hustle and bustle there is a steady rhythm deep underneath. The fluttering piccolo is soloing and the trumpets are triumphant in a exciting crescendo but the steady whole notes of the concert cello are still audible. We don't see all the numbers, the measurements, rates, volumes, Meds and checks. We don't see the calculations and adjustments it has become such second nature to us there isn't even a second thought. Today amid all the medicine we just lived and it felt GOOD.  We did pumps and bags and blood sugars and vitals cooling and temperatures and the whole shebang but we sang songs, made imaginary castles, told stories, chased monsters and laughed away moments in life that can never be returned. I want my life to be this way. I want my children's lives to be this way. To acknowledge the medicine, respect it, care for it but know it doesn't have to define your life. Drop a few stitches, go off pattern, Purl instead of Knit and create an abstract art.

I finished a large hat tonight, knitted together a beautiful memory. It is too small for me but too large for any of my kids but maybe someday... someone... will wear it and that memory will grow with them. The natural fibers with a fierce locking twist and each stitch embedded with a whisper of time. Ages will pass and the heirloom hat will find its way to a drawer but the memory of its creating will keep hearts warm far longer than ears.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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